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Lies My Neuro Told Me or (Common MS Myths)
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Lies My Neuro Told Me or (Common MS Myths)

I know the title is inflammatory toward doctors, but it is catchy and I want you to read this.  I don't usually believe that neuros give misinformation to us, but I believe that a neurologist who presumes to diagnose or treat MS should be up on the current medical literature.  Some of these "opinions" which are given to us as gospel are things for which the good doctors should know better!

1)  You Have to be 25 years old and female to get MS.

      Yes, some us have been told such outrageous things.  The age of onset of MS has been found to be between 18 months and 70-some years of age.  The average age of diagnosis is just over 35.  The classic range is, indeed, between 20 and 40, but the doctor that stops there is an idiot.  Below the age of 50, women outnumber men, but the ratio is not heavy like in, say, lupus.  I believe that it is close to 3:1.  In Late-Onset MS (onset after the age of 50) men and women are represented almost equally (something like 1.5:1)

2)  All people with MS have Optic Neuritis at the beginning of the disease.
    
       Patently false, though it is a common presenting symptom and about 80% will have ON at sometime during their illness.  Actually, this number may be higher, but we will look at that in the HP on Optic Neuritis.

3)  There is no pain in MS.

       Arrgh!  This is a statement by someone who has not read the literature, but only the Cliff's Notes written by a preschooler.  This doctor also has never taken care of people with MS and PAID ATTENTION!  The people in his/her care have had their pain dismissed due to other causes.  MS has many serious causes of pain.  Trigeminal neuralgia is more common in MSers than in the general population.  TN has been called the "Suicide Pain".  Also, there are other painful neuralgias, radicular pain, as if there was a pinched nerve, new onset of headaches, a huge proportion of MSers have back and neck pain.  Spasticity is common and spasticity can have unrelenting and very difficult-to-treat pain.  Seriously painful spasms are widely experienced.  

4)  Depression in MS is due to stress.

       Simply said, MS often causes depression PRIMARILY.  A major depressive episode should be viewed as an MS attack and counted toward diagnosis rather than used as a reason to send a limbolander off the the psychiatrist.

5)   All brain MRI spots are due to aging - no matter what the person's age.  

       Good data shows that only about 30% of 60-year-olds have age-related spots and it drops with age.

6)   You have to have 9 Lesions in order to have MS.

       This is so patently stupid that one should run, lurch, hobble or roll away from that doctor as fast as possible.  MS can exist - if not be diagnosed - with NO MRI lesions.  With the proper history and physical findings even one lesion can make the diagnosis.  Two lesions are a little better, but there is not much increase in the number with 3 or more.  Thus, you don't have a higher chance of having MS if you have lots of lesions over just having two - if you have had at least 2 clinical attacks and have at least one clinical neurologic abnormality.

        The need to have 9 or more lesions is a small part of the McDonald criteria that is used only if the person hasn't had enough attacks or abnormalities on neuro exam.  These doctors are uneducable.

7)   "You have too few lesions"

        See above

8)   "You have too many lesions"

        what?

9)   You aren't getting worse because your neruo exam hasn't changed.

       This is a toughy, but the neuro exam is limited in how sensitive it is to small changes.  The best neuros are pretty good at getting repeatable results on their exams, but still cannot measure those fine points that we, who are living in our bodies and experiencing something, can be very sure of.  A few recent studies have called to our MS doctors to put more stock into our reports.  Also remember that the severity of our disease can vary day to day and even hour to hour.  We may see the doc on a good day that does not represent our changing norm.  

10)  You don't need DMD's if your symptoms are mild.

       A favorite position of the Mayo Clinic, but one that has been debunked by all of the ongoing studies of the four DMDs.  The meds work better the earlier they are used in our disease.

11)   Lack of symptoms means the disease is halted.

       We know that this disease usually progresses in the background, despite a lack of relapses.  Our disease is not merely equal to the relapses we are having.  


Well, these were the ones I remembered just now.  I invite comment and other submissions.  These will become a Helath Page.

Quix
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146 Comments Post a Comment
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739070_tn?1338607002
Well said. Glad it's going to be a Health Page.

My favorite bit of misinformation is #6. Your description on how to quickly leave this person's presence painted quite the picture in my mind. Point made..clearly.

Thanks for taking this on!

Ren
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405614_tn?1329147714
Thank you, this is great, especially as I'm ready to visit neuro #4.  I'm have to believe he's not into any of these myths.

How about words to the effect of "we have watch and wait; you just have burning nerve pain, not numbness or loss of strength" (despite the 30+ brain lesions)?

Of course, the all time favorite:  "Although you were sent for a brain MRI because of neurological symptoms, the many hyperintensities that showed up are either normal aging or small vessel ischemic disease "?  This is followed up by either a variant of "your symptoms are all in your head" or (choose the favorite diagnosis of the day, such as complex migraines).

Its a crying shame that these lies/myths/misinformation delay treatment and can make those of us in limboland feel hopeless.

Thanks again for putting it all together for us.

Kathy




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147426_tn?1317269232
Hi, Ren,

I reread my comments and stated one thing quite unclearly.

5)  Only 30% of 60 year-olds have age-related spots and the number drops as the age drops.

Q
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147426_tn?1317269232
When we get the "We'll just have to watch and wait" line we need to be assertive.  We need to ask, "Wait for what?  What is it that will convince you that I am suffering here and my quality of life is nil?  MS has been strongly suggested by several doctors and everything else has been ruled out."  You can then very clearly state the number of attacks you have had, mention the number of abnormalities that have been documented - even though the doctor did not remember then by the time she dictated the note, mention the exhaustive "rule-out" that has been done and then note the 30+ brain and spine lesions.  Ask why this doesn't add up to MS.

Dr. Stanley Cohan is known as having the compassion of a saint and the brilliance of an Einstein.  I was unable to get assigned to his practice.  Dr. M told me my disease is just too mild.  He is approaching his retirement and is apparently only seeing the worst and most complicated.  Oh, well.  

Quix
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Avatar_f_tn
Too funny, yet too real!

You forgot a couple of my favorites, the spots are from (non-existent) headaches or bumps on the head.

Or hyper-reflexia could just be normal for some women!

Thanks for all your work,
Karen
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987762_tn?1331031553
I think this is quite important, not only to the mental well being of us limbo landers but sometimes we need to find the courage to keep looking for the holy grail, the dx we seem to need before we get any help or compasion from the medical fraternity. A few others you might feel is worthy of inclusion are:

Conversion disorder/psychological condition/stress etc. when the clinical symptoms are not validated with visible lesions, not enough lesions etc on MRI.

Senile dementia/dementia/ age related to explain episodes of cognitive decline, lexical losses, stuttering or slurred speach etc. for people in their 20's, 30's, 40's, 50's

Neurologist that dont follow MS protocol and still believe they've ruled out MS.

MALE Neurologist with ego's as big as Texas who think all women are hysterical, attention seeking hypercondriacs etc.

Cheers........JJ
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611606_tn?1315521367
Good Morning, how thoughtful of you to post this important information...
Of course the one about NO PAIN caught my eye. Wonder Why?? ;-0

It only took nine pain filled years for my doctors to start addressing the awful pain I live with daily, because as They said "there is No Pain with MS"  Hello

Now I am 23 almost 24 years into this journey and for the past three years they have not been able to manage the internal pain I live with 24/7..Right now we are trying Cymbalta, I am into my second week and know it takes at least three weeks before we will began to know if it is going to help.

I hope some how you can get other doctors to read this book..
Hope you are feeling better, at least even a little bit.. I'm keeping you in my Prayers..
Love & Hugs {{{{~!~}}}} DJ

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648910_tn?1290666683
As usual, Great job Quix!   I think many of the new members would especially.
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Avatar_f_tn
Quix, thank you so very much for all the info.you provided.  I was diagnosed w/ ms a few days ago by the most wonderful dr.  Prior to that, I had a neuro who's focus is on ms.
Thank God I trusted my instinct & didn't follow thru w/ him.  He told me I have migraines
(I know about them, so I knew I didn't  have migraines); I have none of the symptoms.
I have "greater than 20 lesions" on my brain mri which was repeated 6 mos. later w/ no
change.  I had a spinal tap which was negative, so "You definitely don't have ms."  I was so happy & not thinking clearly (knowing I don't have migraines & never had them & my
headaches are always mild).  A few days later, I was using my brain, for a change.  I
had done some research when the 1st mri stated possibility of ms.  I knew that some
people (who have ms) don't test positive - like a good friend's husband who has had ms
for many yrs.  I also knew that there is no test that can rule out ms, only rule out other
diseases.  How can this dr. have said what he did?!!  I stopped the migraine med. which
did nothing for any of symptoms (I was getting more every few wks.) except for giving me a bad side effect that became horrible.  I noticed no change.  I was putting a drug into
my system for nothing & wasting time.  Anyway, I totally understand your frustration, anger, etc., bec. I feel it too.  I'm going to tell the drs. I know who refer to him my story, & they can tell their collegues.  I don't want to hurt him,  just don't want him to do this
to others.  Thank you again for all you do!!!  If you were here, i'd give you a great big hug, actually a few. Sending lots of good wishes to you.  Take good care!   Roni          
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704043_tn?1298060444
sooo funny  but why do we pay them--  oh yeh my spasums were so bad thought i had bone cancer and well they say if it is ms you wouldnt have pain,, oh and this -do you want to have ms!!!   boy what we go through how about -do you do drugs??  street drugs?? urgg!!!!  instead of helping they wait till a legg or both legs - arms arent moveing or moveing very well.... then  It looks like its ms!!!!!!! u  want 2  scream!!!  sorry 4 venting but boy do i feel better!!!!!   be well!!! tick
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Avatar_f_tn
Boy do I feel your pain!!  When I had 9 spots on my brain MRI, a Neuro dismissed my pain and said "You dont have MS.  You dont want MS anyway, it's an insurance nightmare."  Like it was some kind if disease I just wanted to have.  He didnt think the spots looked "typical" and he showed me a "typical" MS MRI in a textbook.  True enough, mine looked different, but I have since learned there is no such thing as typical!

Oh, and another Dr. said my pain threshold was too low.  Even though I tried to explain that I walked on a broken foot for three days because I can take so much pain.  ANother Dr. said that since I lost my job, I had more time to "notice" my pain.  She had apparently not listened to me when I told her I had LOST my job because of the pain.

Dont feel sorry for venting.  That is what we are here for., and I guess I just did some venting myself!

Karen
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738075_tn?1330579444
Brilliant!  My heart goes out to all the limbo dwellers on this forum that have to put up with this B.S.

Now, on to deal with my flair that started Friday night...

Guitar_grrrl
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559187_tn?1330786456
Here's another "lie" i was told by my first evil neuro:

"Your oligoclonal band test was negative"  he said.  

I asked, "what do you mean, I was told there were 2 bands in the spinal fluid".  

He responded, "How did you know about that?  Well, anyway, you had only 2 and according to the Mayo Clinic who performed the test, you have to have 4 or more".

Thankfully I moved on to a different neuro who see's the world as it really is and not through the eyes of the Mayo.  
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198419_tn?1360245956
This is absolutely outstanding!!!!!

Thank you so much Doc Q.

I'm sure Rena girl will have an add or two about benign MS, and that crystal ball her Dr. must have looked into to determine.

-shell
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1054985_tn?1257176875
Thanks for that it was a good read!!!
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704043_tn?1298060444
  thanks! karen  reading this was kind of funny ... but as u laugh through the tears!!!  tick
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410281_tn?1254232664
I've been wondering when I will start fighting again after my last neuro visit - silent migraine my a** - maybe it's time.
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279234_tn?1363108849
Love this post!!

I think the several lies that I can remember, that really stood out from the rest were;

One neuro asked me about my symptoms and how they occur. This is an important question. I told him that my arm and leg usually felt weak and the spasticity just about the same time. He said that it couldn't be MS. MS symptoms occur in a certain order.

Another neuro told me that nonspecific lesions do not occur in MS. I have 4-5 nonspecific lesions but they say half the population have these, and they mean nothing. But my question to him was, "Does that half have my symptoms and abnormal neuro exam?"
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883901_tn?1294004372
What a fascinating post. I am in the Limboland & to be honest feel like giving up as I really feel I am hitting my head against a brick wall, so much for the NHS mmmm.

The Neuro who seen me through the Balance Clinic said my lesions were caused because I smoke, how true is this??? I have heard you have to be over 60yrs old.

When I first came down with my first symptom, which was extremely painfull back spasms that went down my right leg, & my inner thighs & groin making it too painfull to walk, this lasted a good 10 weeks, this effected a slight loss of sensation in my right leg, which the Neuro did confirm I have lost sensation. My right leg has not been the same since, it took me 3 attempts to use my right leg to do the heel down my left shin. Neuro said get a book about how to look after your back.

I explained about dropping things out my right hand, he did his pin testing confirmed I have lost sensation, said well thats Carpel Tunnel, but never had any pain with my hand or wrist, saying that my forearm up to my upper arm is now having alot of painfull spasms, am finding hard to do my buttons up now.

My balance he said well thats maybe because of stress, as I explained how I nearly fell down the stairs when I had this funny turn in my head.

Its like for every symptom I told him I have or had he either nodded his head or said it could be a few things but not saying what.

What am I to believe anymore!!!!! But with what you have written is so good to know as maybe I can say something.
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147426_tn?1317269232
Wow, I'm amazed at the reception of this thread.  It looks like time to add some more to the official list.

11)  Even though you have the history of relapses, the abnormal neuro exam findings and lesions on the MRI, we need to "wait and see what happens next."

       What?  Are we waiting for the other arm to fall off?  

       Many of us have encountered Dr. On-The-Fence.  These guys are not confident of their abilities or are just lazy.  Yes, there are times when the data is just not there, but the McDonald Criteria are NOT that hard.  If the rule-outs have been thoroughly looked at then the diagnosis can be made even though the presentation or MRI appearance my be atypical.  MS does have more classic presentations usually, but the number of atypical presentations is NOT rare.  GROW SOME, okay?!!!

12)  We sent you for an MRI to look for lesions and WE FOUND SOME!  But these are due to something else.

       Typically these doctors blame the lesions on age (unacceptable younger than 60 in my mind), smoking, high blood pressure (even in those with this problem), obesity (??), minor head trauma (even without such a history), migraine (these do muddy the picture) forgetting that all of these other reasons for MRI T2 hyperintensities DO NOT CAUSE SYMPTOMS!!!!!    The neuro must at all times explain, not only the MRI lesions, but also the symptoms and any neuro exam abnormalities.  They must keep the whole picture in mind.

13)  Early in the process the neuro says - "Oh, lots of people have that."  

       If the statement is made instead of doing the proper exam and work up, then the doc is a lazy dufus and we need to make our way to the door.  We need our docs to listen to us, lookl at us and think about us.  Ealy dismissal of symptoms or problems is unacceptable.

14)  This is all due to stress/anxiety

       Give me a break!  We have all, at one time or another, had a lot of stress and we know how we react.  Somehow, it has gotten into doc's heads that stress can cause almost every known symptom, and it does so with great frequency.  "Due to stress" is a diagnosis of exclusion and, when handed out early, is the product of a dull, lazy or mediocre mind.  

       Yes, there are people with true Health Anxiety (Hypochondriacs).  They usually know who they are and that they overreact to small symptoms.  This is a different discussion.

15)  This is a Conversion Disorder

       A Conversion Disorder is a rare condition where, usually in the presence of severe emotional trauma, the psyche convinces the mind that something is wrong.  Examples are Hysterical Blindness or Hysterical paralysis.  Guys, this is rare and should be made only by exclusion and by a psychiatrist.

16)  "This symptom is real, but this other one is caused by a migraine and these two are due to stress.   Your brain lesions are due to your age"

       Beware of the doctor that blithely dismisses all the problems of a patient with an assortment of explanations.  When you went to see this doctor you might have almost tripped over a gray, slimy thing scurrying down the hall.  This was his brain trying to make a break for it.

       Good, tight medical thinking tries hard to answer all of a patient's problems, exam findings and test results with a single diagnosis.  While this isn't always possible, it keeps the docs from asigning different diagnoses to each problem.

17)  "You're just getting older."

       OMG!!!  People do not lose it just because they had they 40th birthday, or 50th, or typically, even their 60th.  Don't get me started.  

18)  "There is no pain in MS"

       This is too important to not state again.  I think this myth came out of the misinterpretation of a huge study looking at the incidence of pain in MS.  The researchers asked a huge number of MSers and people without MS:  "Have you ever had significant pain?"  About equal numbers of each group responded, "Yes."  This might be interpeted as showing that there was no increase in pain in MS.  At this point some of the duller doctors - those with the attention span of a gnat - left for the Tiddly Winks tournament next door.  They missed the following.

       The study then asked the participants, "Are you in pain now?"  About one third of the healthy people stated they were.  That number was doubled in the MS group.  The point to take away from this second question was that:  At any given time 2/3's of people with MS are in pain.  This is very significant!

       The study followed up with a question about what kind of pain people had had.  The group without MS reported a great perponderance of headaches and back pain.  The group with MS reported neck and back pain, along with severe limb pain of many different kinds.  Nuff said.

19)  Your LP was negative so you can't have MS.

       Arrgh!  Again, these are the Tiddly Winks players.  In a nutshell, the studies that look at this question find that 3% to 10% of people with MS have negative LPs (spinal taps).  Why the misinformation?

       About 2004 a group discovered that a new technique, called "Isoelectric Focusing" greatly improved the ability to find O-Bands.  This group (or one just after it) published a widely reported study that 100% of people with MS in their study had O-Bands.  The TW players saw this and never again looked at a neurology journal.  No study since then has confirmed this result.  The average is about 95% of people with MS have O-Bands.

       Now, during a study the researchers do everything they can to optimize the test and it's interpretation.  The technicians are carefully trained to run and interpret the test and they have the same techs do all of the samples.  This is not true in the real world.  Techs run the gamut of very good to dumb or sloppy.  We will rarely see results as high in real life as they are in studies.

       In addition, we have a large number of these LP tests being run by the Mayo Clinic lab.  At some point in the last year, the Mayo changed the "postive" on the O-Band test from "2 or more unique bands" to "4 or more."  This is not accepted by the bulk of the MS Neurologist world.  I haven't yet seen the studies that show this, but it is in keeping with the apparent Mayo agenda of decreasing the number of people diagnosed with MS.  Docs that hold the Mayo in high esteem (obviously I am not one) are more likely to adopt this new "standard."

       Also, according to the still used McDonald Criteria, a positive LP result can be the "elevated IgG Index."  The Index is less sensitive than O-Bands, but it is still used.  The Mayo ignores this test and we have had some neuros here ignore an elevated IgG Index and tell people that the LP is negative.  This is not accepted by the majority of the neuro specialists.

I am going to quit here and finish up later.

Quix

The thread is still open to comment and new subnissions.  Applications to the Tiddly Winks tournament are available at the office.
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405614_tn?1329147714
Ooh, I forgot, neuro #2 said something to the effect of : you would to have had MS for around 20 years to have as many lesions as you do, so your lesions aren't from MS.

When I asked neuro #3 if ischemic lesions could cause my neurological symptoms, she hmmed and muttered something; next visit is when she came up with the theory that my PSVT (benign heart arrhythmia) was causing me to throw clots, have small strokes, that would explain most of my symptoms.  Bad theory, which my cardiologist threw out.  Then neuro #3 kicked me to the curb, lol!

Quix, I totally enjoy the way you write!
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848718_tn?1257142401
Brilliant!

Thanks so much for putting that together. I don't have anything to add, but was interested to see that MS can CAUSE depression. I didn't know that. Not that I'm at all surprised ...

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147426_tn?1317269232
Depression can be a very huge part of MS.  this HP explains it further.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Depression-and-MS/show/752?cid=36

Quix
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987762_tn?1331031553
The timing couldn't of been more poiant (sp) i've just had a neuropsychological exam and even though i've dropped at least 2 standard deviations in IQ points i'm still in the normal range so therefore i'm not showing any cognitive decline. Can that one get added please i think dropping 30+ IQ points is a significant decline, dont you?

I think i've just had a good chat with the neuropsychologist about no. 14 and no. 15, i'll be spitting out more IQ points if either end up in his report, am i wrong in my belief that you need some evidence or its just a porky pie, if you dont then there is no end to it.

Cheers.......JJ
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Avatar_m_tn
hip hip hooray for Doc Q!!

I've heard those "opinions" given gospel over the last 23+ years enough times to just about drive a person insane with frustration and anger.

Enough so that I now see a psych to help me manage the anger and frustration and how to deal with a unspecified "demyelinating disease of the CNS". mind you, "unspecified" comes from the VA, not non-VA neuros.

over the years, the doctors would say there is no objective data but your symptoms are real to you. there was no objective data because they wouldn't look for it. however, since objective data has been seen finally, my historical symptoms now don't meet the criteria for MS. you read that right!  anything, and i mean any tiny item that isn't picture perfect for a diagnosis they grab for whenever objective data is found. they can drag this on until i die, just like the VA did with the ALS patient fiasco.

i would say more but there is no reason to as the above is plenty to drive the point home to this family of online MS'ers and to show i'm on the same page as the mighty Doc Q with this thread.

I was sure close to the end of my rope with mind numbing mystery symptoms and the brush-off from doctors when i found this forum. It sure has helped to re-plenish/energize my confidence and that confidence was mighty thirsty too.

and this thread started by Doc Q is just the medicine i needed today! whew!

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Avatar_f_tn
Thanks Quix, this will make a great health page.  It's really great to see you back on the forum!!!!

I, as you already know, was sent packing because I didn't have any lesions showing on my MRI, done on a 1.5T, of the brain and CSpine.  I've never even had an MRI of the TSpine.

My neuro stated that if I didn't have any lesions showing in the brain or Cspine that it couldn't be MS.  Also said that I wouldn't still be walking if my symptoms were caused by MS, because I had been having them for too long.  I pretty much knew then that I was probably out of luck with this neuro.

I have recently met with a new PCP who was appalled that with my symptoms that the treating neuro didn't give me a clinical dx during my first visit.  This made me feel better in some ways, but sad in others.

While I continue to deteriorate, like so many others in limboland, I guess it just all boils down to being lucky enough to find a good neuro who thinks on his feet and REALLY knows the symptoms of MS, and is willing to step up and dx, without every single criteria having been met.

Maybe one day, the criteria will meet a human level and more MS sufferers can start their DMD sooner and slow the progress of this monster.

doni
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147426_tn?1317269232
AND ON....

20)  MS symptoms always occur in particular order.

       If so, no one told MS!  This is poppycock!  The ways that MS can show up are truly infinite.  It is true that some symptoms are more common (like visual symptoms, dizziness, numbness and tingling, weakness), but to think that it progresses in a specific manner is so outrageous as to show that this doctor HAS NO CLUE what MS looks like and is not only icapable of diagnosing it, but also of treating it.  Can we all say "Tiddly Winks" in unison?



21)  MS lesions are always "classic" in appearance and location.

       Not true.  These doctors are rigid thinkers and either do not know that MS can present or progress atypically or they have never read any of the literature.  Escape them while you are still mobile.  This includes what the radiologist might call "nonspecific" lesions.  While you may not be able to say that they are definitely due to MS you also CANNOT say that they are NOT due to MS.

22)  If there are no new lesions then you can't be having a relapse.  

       These doctors worship the MRI as though it were a god itself.  We also call them lesion counters.  They should read the MOST BASIC literature regarding the diagnosis of MS.  A relapse is defined by SYMPTOMS - not the MRI.  Sheesh!!

23)  If there isn't a lesion to match the symptom then the symptom cannot be due to MS.

       Oh, go catch that slimy, gray thing before it escapes completely and forever!!  Of course, not all symptoms that we have will be due to MS.  But, if the symptom is neurological (Like Rena's face pain) then either it is due to MS, or there is another neuro disease lurking (unlikely) or they believe the patient is lying.  (what?)  Either way they are incapable of caring for MS.

24)  Yes, your IQ has declined significantly (or your leg has shrunk enormously, or your strength is way down) but it is still "within normal limits" so there is no problem.

       what?  (see instructions above for escaping)

25)  From a neuro, "I don't need to read my own MRIs"

       And you say you are board-certified?  IMHO, this is a neurologist who is too dumb or too lazy to be taking care of or diagnosing MS.  Interpreting MRIs is part of the job-description.  With this there is no one to give the often needed second opinion to the radiologist.

26)  If you have had MS for this long you would have more lesions.

       see #7 above.

27)  If your MRI hasn't changed in _____ months/years, then you do not have MS.  

       MS marches to no one's drummer.  It progresses as it does.  We have had people here have MS removed from consideration because of no change in the MRI in some length of time.  We have also seen several who have had their diagnosis TAKEN AWAY because the MRI is unchanged.  (One of them was on a DMD!!!)   While a long-stable MRI may be a reason to revisit the history, physical and rule out process, it alone does not constitute reason to discard MS.

       How long can it remain unchanged?  I can find no answer to that.  I have seen case reports where it was unchanged for several years, yet it was clear the patient had MS.  Mine has been pretty much stable for the last five years - though 2 1/2 were on a DMD.  No one is challenging my diagnosis - yet.  

       A common myth seems to be that if the MRI is unchanged a few months after the first then MS is off the table.  These guys are missing the rationale for waiting 3-6 months and repeating the MRI when the diagnosis is unclear.  IF THE MRI SHOWS NEW LESIONS then there is strong evidence for MS.  The reverse is NOT true.  If it stays the same then you just don't have more evidence - not that MS is ruled out.

       How come we can read the literature and all of this is so clear?  I can only conclude that these are the guys who left the CME meeting for the TW tournament.

Thoughts?

Quix

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"If it was MS, you would have more noticeable weakness.  Let me know if you can't hold a cup of coffee or your keys."

"You can't bring on sx of MS [ala l'Hermetes] they only come on their own."

To be fair, this was a neurological nurse practitioner that I had originally gone to for what I thought was bad migraine (turned out to be TN and occipital neuralgia).  She did note my hyper-reflexia and a few other CNS sx, but just felt sure it wasn't MS.  As nice as she was, I knew I needed to see a neuro who knew at least as much about MS as I do...  :)
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So when is your book coming out??? HINT HINT!!!!!

I did think of another one that I seem to get, not so sure if its just me or others are getting a version of this one too. Does size matter with MS?

No wonder your so fatigued your too thin/ anorexic you just need to eat more/better/healthier
OR the alternative
No wonder your so fatigued your too over weight/ obese you just need to eat less/better/healthier

I think i've also been told my fatigue is from not exercising enough and from exercising too much all in the same dr visit, fatigue seems to be something hard to understand unless you've experienced it. I've also been told i dont get enough sleep and i sleep too much, still cant get an explanation for why i can run up 20 flights of stairs and during an epidsode i cant walk the 5 steps to the loo, let alone in time.

The 'blooper' my GP came up with was "you dont have ANY symptoms of MS!" hmmmm what medical text book has she been reading?

Cheers........JJ

PS. You are a legend!
PPS. Oh how old do you have to be before dr's stop saying "good girl?" lol
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Great post which will make a great HP. Here's a new one for you that I haven't seen on the forum.

The day I was dx as my neuro was deliberating on my sx and tests, he commented that there had not been 'that many new lesions in te last 5 years'. I asked him if lesions could come and go over time and his reply was 'no of course not we can clearly see the ones you had 5 years ago on the new MRI'.

At this he pointed to the largest lesion which was still there but with more ragged edges than  years ago.

Comments welcome
Pat
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Your item #12 is one that after 23+ years the VA brings up, that is my drinking may have caused the lesions. they bring up smoking too, which i quit many years ago.
i quit drinking 19 years ago.

anything they can blame on the patient/Vet they do in order not to label it a disability.

well, drinking didn't cause the Obands or the Dawson's finger image that is appearing with the 3.0t MRIs or the symptoms that have occurred over the years.

in the early 90's i believed the VA when they made these statements.  that doesn't work anymore. you folks have educated me ...


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Thanks... that helps, especially with the memory issues!
Debbie
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I want to add to number #19.

19)  You can't have MS without O-Bands in your spinal tap.

       We shouldn't forget about PPMS which affects about one in every 7 people with MS.  People with PPMS have less inflammation and more pure neuronal degeneration, thus there is less immune activity to cause the O-Bands.  Many studies state that only about 60% of people with PPMS will have O-Bands.  That is important to remember.  Many docs that are poorly informed about MS in general act like PPMS doesn't exist.

28)  Lesions can't disappear in MS

       Oh, Puppypoop!  Lesions come and lesions go, but mostly they come.  Of course there is healing of the myelin in MS.  This is well-known and well-documented.  It is this nature of lesions appearing and a few disappearing that is so characteristic of MS and less so of other MS mimics.

29)   If your brain MRI is clear then you don't have MS and we don't need to look further.

       About 25% of people with MS have lesions ONLY in the spinal cord.  The official recommendations for using the MRI in diagnosing MS state that if the history and or physical is suggestive for MS and brain MRI is clear or non-diagnostic (not enough evidence to make a diagnosis) then the spinal cord should be imaged.  In my case I only had one measly (but classic) lesion in my brain MRI, but had six in my spinal cord which clinched my diagnosis.  Many MS neuros recommend doing both brain and spine initially.

       Because far fewer diseases cause lesions in the spinal cord, a lesion there is of great importance.  People who are denied a spine MRI in the face of suggestive symptoms and physicalfindings have a dunce for a neurologist.

29)   You have lesions because you drank or smoked.

       There is NOTHING in the literature that shows that drinking causes T2 hyperintensities and it HAS been studied.  Smoking is a very minor cause of lesions and may, indeed, cause or contribgute to some lesions - which might be permanent, because they would be vascular lesions (like ischemic vasular disease).  However, the role of smoking has been way over-blown by the medical media.  

However, drugs like amphetamines and cocaine can cause permanent brain lesions and are known for causing strokes.  This is a concern.

Now, let's look at the problem of smoking or of taking amphetamines, crack, or cocaine and similar drugs.  The lesions that these drugs or smoking might cause or contribute to would form during the time that they were being taken.  They would cause symptoms from the time that those lesions formed.  So, any symptoms that they caused would be traced to the time period during which they were used.  If you used drugs in your youth and now, many years later, you suddenly have symptoms....well, no one can rationally say that the symptoms are due to the earlier drug use.  So, if you have lesions that you "might" be able to explain, but new onset of lesions that aren't explained, then the doc must reject the explanation that the drugs are the cause.  More diagnostic work must be done.  Remember - the diagnosis must explain everything.  You can't dismiss the lesions without considering the neurological symptoms.  Make sense?

The same is true with smoking.  If you gave up smoking years ago, it can't be used to explain symptoms that occurred much later.  Even if it did cause some lesions, your newer symptoms can't be attributed to old smoking.

It is true and has been shown that smoking is a risk factor in developing MS.  This has been shown conclusively.  So, any doctor that dismisses MS because the lesions are "due to smoking" (doubtful) is thinking the problem through. (Oh, he of the escaping brain)  The smoking, earlier or currently has made MS more likely.

We and our doctors have to realize that "something" is causing symptoms now.  If it were lesions that formed years ago, then the symptoms would have shown up years ago.  Since they didn't, we have to look for a different cause.

27)  We repeated your MRI in 3, 6, 12 (whatever) months to see if it changed.  It didn't therefore you don't have MS.

       This is more explanation for this.  When the MRI shows more lesions, or healing of a lesion it provides additional evidence for the diagnosis of MS.  However, if the MRI hasn't changed, we can't say anything about the likelihood of MS.  Lack of change does not provide any good evidence "against" the diagnosis.

30)  You can't do anything to bring on the symptoms of MS???

       Say what?   Someone's slimy, gray thing got away!  Ummm...let me count the ways.  1) Flex your neck to elicit L'Hermittes, 2) exercise to bring on general and localized fatigue and symptoms, 2) hot environments to bring out a cornucopia of neurological problems especially,  3)  drink alcohol to bring on otherwise mild vertigo symptoms, 4) stand close to a busy street to have your vision go wonky, 5) Get an immunization or an infection.  This guy apparently never heard of Uhthoff's Phenomenon.  Sheesh!  Really?

I think we're ready to make this an official HP.

Q

      
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edit:

"It is true and has been shown that smoking is a risk factor in developing MS.  This has been shown conclusively.  So, any doctor that dismisses MS because the lesions are "due to smoking" (doubtful) ISN'T thinking the problem through. (Oh, he of the escaping brain)  The smoking, earlier or currently has made MS more likely.

Smoking also may cause the MS to progress more rapidly.

Q
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>>27)  We repeated your MRI in 3, 6, 12 (whatever) months to see if it changed.  It didn't therefore you don't have MS.

this is exactly what one neuro in sept wrote down in his notes and left it as "unspecified...", again.  wrote down only a few symptoms like thes three: "fatigue, balance and cognitive" issues and used this statement "suggestive] of MS", in the same sentence. let's see mr neuro, you wasted 9 months of my time, stonewalling actually is all you did. you know it and i know it.  

i gave him a 23 year time line per his request and he certainly ignored it's contents. never mentioned and the "dawson's fingers" that the other neuro wrote down. of course this other neuro, he used the word "suggestive" too.

as you can see, no one in that organization will commit to anything. no problem, many more rounds in this epic tale.


>>30)  You can't do anything to bring on the symptoms of MS???

happens every time i exert myself. which is why i ofter say, i'm on again and off again. just when you think you are on a roll, then bam, you get knocked back by some invisible force ... MS i take it. like your life force has been drastically reduced or something.

>>I think we're ready to make this an official HP.

I second the motion!

i would have been a babbling bafoon if i had not of found this forum when i did. i'm not exagerating either.




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How your threads are such a eye opener.

I was very interested by the smoking part. When I had my Brain Scan 6 weeks later my doctor informed me that the balance clinic, wanted me to have a blood test to rule out Vascular Desease, at that time I did not know what the results were of my brain scan, but if I am right he seen lesions & because I smoke was seeing if they were Vascular lesions. The Vascular test which I found out 4 weeks later when I went to the balance clinic was negative.

Am I right in thinking that because I do smoke & am displaying Nuero problems along with brain lesions, MS should not have been dismissed so quickly untill they have done all testing necessary.

I am wondering why I have not yet had a full MRI on my spine as I have complained from day 1, how my back goes into complete spasm & can hurt so so much with just pain. I had a MRI of the base of my spine & pelvic 3yrs ago, was negative, but at that time they were not investigating MS, MS has only being looked at since last October 08.

Can you give me any advice on how to address this, what should I be asking the doctors, what tests should I have had done, I have had loads of blood test including B12 all negative.

Louby x
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31)  The length of time you have had MS will correlate with the number of lesions you have.  Therefore, if you have a lot of lesions and a short history of symptoms it cant' be MS and conversely if you don't have many lesions, but have a long history of symptoms, then it also can't be MS.

       This is patently ridiculous!  There are innumerable reports of a person having the first symptoms of MS and immediately being found with a brain full of lesions.  Then there are also the people who have a decade or more of symptoms and few lesions.  There often is NO correlation between number of lesions and length of symptoms.

32)  MS is an MRI diagnosis.

       Wrong! Wrong! and WRONG!!  MS is a diagnosis of symptoms that suggest demyelination, combined with a neuro exam that shows multiple areas of damage in the central nervous system.  If all other reasonable explanations are ruled out, the MRI is only needed to provide confirmatory evidence.  If the history and physical don't have all the needed evidence then the MC allow the doctor to use the MRI to provide some of the missing evidence.

       Some researchers are attempting to find the right pattern of MRI findings that will allow doc's to diagnose MS on the basis of the MRI.  I find this scary.  The more that we focus on this, the more docs will be tempted to ignore our symptoms and physical exam in favor of doing a simple MRI.  Doing this allows great harm to be done by assuming that the MRI process will always show every bit of damage that is occurring in a patient's central nervous system, that the MRI will always be perfectly and completely interpreted, and that all reports will always be a reflection of everything that is seen.  Alas, This will all only be true when human beings become perfect.

       Uniformly on this forum we have seen that the worst neurologists were those that omitted or ignored or disbelieved the history, did a haphazard exam (or none at all) or who relied solely on the radiologists' report for their MRI assessment.  MS will be most accurately diagnosed by the doctor who follows his/her training and who listens to the patient, who looks thoroughly at the patient, who thinks the differential diagnosis through and does a thorough rule-out and who uses the MRI as a very useful tool to glean more evidence.  

I have said it a hundred times and will say it again.  All of us must have a physician who LISTENS to us, LOOKS at us carefully,  and who THINKS about all of the evidence that is available.

32)  The McDonald Criteria dictate the number and locations of lesions that are needed to diagnose MS.

       This may be one of the biggest myths out there.  The McDonald Criteria, in fact, were NOT developed to diagnose every case!  They were developed to aid our doctors when the clincial picture wasn't enough.  Yes, a classic MRI can certainly raise the suspicion of MS very high in a neurologist's mind, but the minimally postive MRI can also give enough evidence that - when combined with enough evidence in the history and physical - to make the diagnosis of MS the only reasonable answer.

If you look at the very first scenario listed in the McDonald Criteria it shows that MS can be diagnosed on the weight of the history and neuro exam alone if the mimics have been well-ruled out.  It would be desirable in that case to do an MRI to gain some confirmatory evidence.   The McDonald Criteria do NOT state that the additional MRI data is mandatory.   How much evidence is needed from the MRI if the history and physical show enough?  One or two lesions is sufficient.  Let me repeat that.  If a person has two or more clear attacks and two or more distinct abnormalities on exam, then one or two MRI lesions is enough to clinch the diagnosis. (again provided the rule-out process was thorough)

In Summary, MS can't be pigeon-holed with simple rules.  That is the most confounding thing about this disease.  Everyone's course is different and progresses at it's own rate.  We have heard well-respected MS Neuro's state that they have some PPMS who progressed very slowly and were still ambulatory with little assistance after 20 years.  Some doctor that is trying to wing-it after reading a list of common statistics about MS is going to misdiagnose (both ways) a lot of people.

These myths are important for both people with the diagnosis and those not yet diagnosed.  If you have the disease and your doctor does not understand how variable it is, you may have symptoms ignored because they "weren't on the list" of things that doctor remembers, like "there is no pain in MS."  People who have MS as yet undiagnosed will be shown the front door for a variety of bogus reasonings.  In the end it doesn't matter if the doctor is uneducated in the disease, or if (s)he is lazy and doesn't care - we won't get the care we need.

I will try to arrange these different myths by the errors that they show being made by the doctors' thinking and by who is most likely to be harmed by them, the diagnosed, the undiagnosed and both.

Quix
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How about You have 5 children and that is why you are having these problems.

You need to take time for yourself and exercise.  This was after I told her I could no longer do leg lifts!

Since when do children cause Optic neuritis and two possible lesions in your brain?

LA
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>> - we won't get the care we need.

i ditto that statement.

although there is no known cure, being mis-diagnosed is quite a mental detriment to a patient over years of dealing with symptoms. in such situations doctors shrug them off and put more of a burden on the patient.

i know most on this forum can relate to that, at least the one's who have experienced first hand.

Yes Doc Q, when you have them time and finish with the arranging of the "different myths by the errors" please let us know. i have a few pertinent people i want to send them too so let us all help to ensure they are bullet proof.

many of us limbolanders need a list of those myths for at the very least, our own validation, and as good literature to pass on to "uneducated/lazy neuro's".

cheers






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how about this...
"these 40-50 lesions are not positioned or shaped exactly like you would expect with MS.  I'm not convinced"
so tell me what it is please.... before there are 40-50 more
skye
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This does need to be an official HP.

I had the experience of a neuro saying it didn't "look" like MS in the MRI scan.... he was a stroke neuro, and had little experience with MS, so I was rather irritated to have been denied my appt with the ms specialist and stuck with him instead.  I asked him as sweetly as possible, "Well if you don't think it is MS, then what do you think that it is?"  After looking a little suprised, he told me "Well, it is MS, but we can't say much else about it....", and then referred me to the MS nurse.
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I applaud you for following up the neurologist's comment with a pointed question.  When we force them to think further sometimes it is all that's needed to get to the answer.

Do you all want me to publish this as an HP WITH my caustic comments or do you want me to try and write them factually?

The first option might be usable to show to people, but I caution that few neurologists are going to be open to reading something from the internet.

The second option is helpful because it can turn despair and depression about being dismissed into righteous anger and help people move forward.

Or should I try to write them up both ways?

I need your opinions on this.

Q
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My vote would be for the one WITH the caustic  remarks as first choice .  The humor and the personal editorials are entertaining especially when one is facing a life changing disease/diagnosis.
An HP without the remarks might be more formal and useful in certain situations however, do you have the energy to do both? That would be the ideal solution.

Ren
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Wow, great job!  

Personally, I think you should write them up both ways.  Make the first one an HP with the factual information, and make the 2nd one with the caustic comments added at the end of the facts.  It looks like you could put the 2nd version in the Testimonials section, or something similar.

I've always heard that the human brain is red, like cherry Jello - after it's pickled it turns gray.  So stay on the lookout for red wrinkled little footballs scurrying down the halls...

I have a brain mold!  It's made for gelatin desserts.  Every Halloween I whip up some panna cotta and pour it into the brain mold, then make a red sauce for the top.  I'll have to find a photo from last year - I can't remember where I put them... story of my life!

But here's a picture of another one...

http  ://www.barking-moonbat.com/images/uploads/brain_food.jpg
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33)  In MS you acquire 5 lesions per year and this rule can be used to determine whether or not you have MS.

Man I cringed just writing that!  This rule goes in in honor of WAF finding this week's biggest Loser.

34)  You are stressed because you have children and that is why you have progressive neurologic symptoms.  LA gets this honor, but soo many others have been told this.  Since all mothers have children, then all mothers are too stressed.  Because of that so many mothers have neurologic symptoms that we should be inundated with disabled mothers.  By analysis, then, no mothers (who are all stressed because they have children) can have MS.

what?
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Hi Quix:  I am brand spankin new to this....however, I can see that you are a God Send to all of us!  I thank you.  I am in limbo....I did have an MRI that indicated scattered nonspecific white matter lesions.  They are in the frontal lobe. My neuro told me it could not be ms because of where they are located.  He did concede to a spinal tap (that was prior to me joining this forum)  I am currently awaiting those results!  I do have a herniated disc in the neck but have not had an MRI of the entire spine. My symptoms have probably been present for years but were subtle and not so compounded. This summer I tore my hamstring and have gone down hill rapidly since. (Don't know if there is a correlation)  Neuro believes it's fibro......I honsetly don't know.  All I know is that all of this has knocked me for a loop and drastically changed my quality of life!  As I do not know much about MS., I am very grateful to read all that you post. Thank you for all that you do!
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After being told I had MS I had a LP done and when it came back negative (not enough bands) was told I did not have MS after all.  Then I asked what caused me to go from 5 lesions 7 years ago to over 20 lesions now.  He then told me I was born that way.  I questioned him about that and he said it was because technology had changed that you could now see all 20+ of them.  I found that interesting as they were both done on a 1T machine!  Some change of technology there....lol!

I thank God that I found another neuro who took me and my test results seriously and got me the help that I needed.  And yes, I do have MS.
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Hi Quix.  Have you ever thought about writing a book?  I would love to see one with the title of this thread..'Lies my neuro told me'.  It would be a really good way for so many of us to be heard...and who knows...maybe a neuro would read it and actually do something about his/her behavior.  I'd love to see it as required reading for anyone studying neurology...especially when it comes to MS.  Charley
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35)  Your eye exam is normal so you don't have optic neuritis.

       Actually we hear this one all the time and most recently from a neuro-ophthalmologist (in name only!).  When the ophtho looks in the eye one of the things  he is looking for is an abnormal optic disc.  The optic disc is the circle seen and is where the optic nerve enters the back of the eye to spread out around the retina.

In many cases of optic neuritis - inflammation from an attack on the myelin of the otpic nerve - the optic disc becomes pale.  This paleness represents loss of nerve fibers within the optic nerve.  It is one of the classic signs of optic neuritis.  HOWEVER.....(you knew this was coming, didn't you?)  in people with confirmed optic neuritis the disc will show changes ONLY 60% OF THE TIME OR LESS.  That means that almost two thirds of people with known optic neuritis will show changes.  This information is ALL OVER the medical literature.  How come some eye specialists don't know it??  Come on!  This is basic stuff.

Other tests that can confirm the presence of optic neuritis if the optic disc looks normal are an MRI focused on the optic nerve, a VEP, visual field testing and OCT (optic coherence tomography).

Remember this:  A normal optic disc on physical exam DOES NOT AND NEVER HAS EXCLUDED THE POSSIBILITY OF OPTIC NEURITIS!!!

Quix
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Thank you for writing this.

My first neuro from the group staff told me there was no pain with ms, even thou I was dx'ed.....He did such a job on me physcolocally and i beat my self so
bad it was pathetic

I told myself I was a baby and a drama queen          I suffered in silenece      because of this statement.   he was not an ms doc, but an epelepsy nero

That was in 1986 and have since found out the truth He said I had unconfortable sensations.  I hate him                                          Linda
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I hate him, too!
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9)   You aren't getting worse because your neruo exam hasn't changed.

       This is a toughy, but the neuro exam is limited in how sensitive it is to small changes.  The best neuros are pretty good at getting repeatable results on their exams, but still cannot measure those fine points that we, who are living in our bodies and experiencing something, can be very sure of.  A few recent studies have called to our MS doctors to put more stock into our reports.  Also remember that the severity of our disease can vary day to day and even hour to hour.  We may see the doc on a good day that does not represent our changing norm.  

.........................................................................................

In my meeting with my neurologist on Monday I said to him i was really worried as I seemed to be progressing not in great big chunks but subtly, each flare up seems to take a little bit more of me.

He said well you look the same to me when I saw you 3 years ago. God I got mad.

I said to him you have no idea how hard it was for me to get here, I have used every last vestige of my energy. I said you look at me and you cant see ANYTHING. You didnt see me last week crawling up the stairs and just crying in pain. You have no idea how I cope. I have gone from taking my little dog out twice, then once, then only in my mobility scooter, and now hardly at all because the banging about hurts me too much.

I said to him, you dont KNOW ME. I see you now and then but you havent really got a clue who I REALLY AM. You dont for instance know that I have an amazing pain threshold. I broke my coxic badly and was back at work within a week sitting on a rubber ring.

Needless to say I flipped. How dare he judge me on a few minutes on a 6 to 8 month rota if i am lucky.

He said well most MS patients usually get so bad they have to come in to see him in a wheelchair, so I gave it to him straight in the eyes, well good for them, for your information I was in a wheelchair last week being pushed about to do my shopping because I could hardly walk.

Then the next day I was ok again WHAT IS THAT ALL ABOUT. Surely MS is so unpredictable you dont know how you will be from one day to the next.

Anyway Quix I think he got the gist of what I was telling him LOL. Next time I see him i shall be in my wheelchair.

It makes me so cross. I know i am progressing I know it isnt massive but its there non the less for me it is devastating.

I hate neuros if your not text book case then forget it.
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I m diagnosed with fibro.Have such bad pain in my eyes I cant stand to open them,and the nerve in my left side of my head is like its sticking out.Doc said I have lesions but only on 1 side so I dont have ms.Its getting hard to walk ,move my legs to tie my shoes.My b12 has been dangerously low forever and it was me whotold him to check it.Have 2 shots monthly...but it wears off so fast,Im dragging again.I have blisters on my scalp..feels like someone took their nails and scratched the hell out of it.I have asked to see a neurologist...me....after I told him Im feeling alot of numbness.But he did say that nobody he knows of is quite as wiped as me that has fibro.By the way,hes sending me to a fibro guy,that was his idea.
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OK, here's mine from my soon-to-be ex-neuro (as soon as I drain all the benefit she holds in giving me access to my records and a second opinion referral).

She does a VEP in her office, interprets it herself as showing ON in the right eye.
Asks me if I remember I time I lost vision for more than a day that also caused pain.

I tell her about a time I had a scotoma that appeared in the lower right visual field for several weeks but caused no pain.  I saw a opthalmologist at the time.  He can provide records.

Two weeks later she informs me that his report states the scotoma was caused by a clot in the LEFT eye!!  (so sorry - but even I know visual loss in the right field of vision doesn't mean the problem is in the right eye)  She does note that my BP was quite elevated at that time and could well be the cause of those T2 hyperintensities on the MRI.  (my BP tends to elevate when I think I'm losing my sight - also when I am in this neuro office btw)

Since I can't remember a suitable episode of vision loss with pain she completely disregards the ON she diagnosed from her own VEP and now feels "uncomfortable" giving the MS diagnosis she offered two weeks earlier.  It didn't take much research to find out that ON can be asymptomatic and VEP is done because it can detect damage not yet apparent to the patient.

Not to mention all my symptoms she stated had no other explanation but MS!  I almost did trip on the slim left behind by the scurrying brain!

Quix, when/why did doctors stop believing that the HISTORY and physical are the most important diagnostic tool available?  Has that principal been dropped from medical education?
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You have actually made me smile, and here i was thinking i had lost it completely

My Neurologist actually recognized that the stress, was causing me to go into depression (which i could not see) and prescribed anti depressants, he told me depression was one major factor in MS, even though I have not been definitely diagnosed with MS as yet, will see the MS Specialist in the next few weeks

you really should write a book, this post is great and I will keep reading it
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Did this genius ever wonder if the stress that leads to depression might have something to do with doctors who won't take the time or apply the decision-making cells in their own brains to be able to tell us what in the world is wrong with us?
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Hi

You are right there, the process of getting a diagnosis, is long and very frustrating,
If my first Neurologist had got his head out of his butt, and stopped to look at test results, and considered everything but TIA's, I may have been on the road to treatment by now

the Neurologist I have now, has put me through every test in the book, and has now referred me to a MS specialist,
he has ruled out all the other diseases that cause my symptoms, and there is basically only MS left to consider, and he also said there is also the possibility this could be a degenerative condition that they cannot do anything about but he will not say positively this is this is the case until i have seen the specialist

but i agree one hundred percent, the indecisiveness of the doctors, is pathetic, as they don't seem to have any idea, the affects it has on our mental health, either that or they don't care

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I still just don't get-why the McDonald Criteria is used.  It's like a straight jacket put on a disease that is incredibly diverse.  I agree that docs really need to look at symptoms and history as being more important than anything else.  

My last present (soon to be past tense) told me a couple of months ago that I was wasting my time coming to him and wasting precious medicine by taking Copaxone as 'you do not have symptoms of MS'.  Is he nuts?  

This is the same doc that on my first visit apologized to me for the members of his profession who told me it was all in my head and told me I was part of a small group of MS'ers who did not present in the typical way.  

He was the one that started me on Copaxone because of my history (3 family members with MS) and all of my symptoms.  He is nuts!!

I told him that I was going to stay on Copaxone because he hadn't proved to me that I did not have MS.  I reminded him of his MS diagnosis and he looked away.  He did not take me off Copaxone and I am feeling better than I have in years.  

That felt better to vent that!!  Thanks.  Charley
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Charley - I'm proud of you throwing his own irrationality in his face.  I wish we all could do that.  This kind of DUMB and STUPID thinking should not be tolerated!

Good for you!!

Quix
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36)  You are on a medication to suppress a symptom.  Since the symptom is suppressed, you are better an no longer have a neurological problem.

what??

Too many of us have been told that since we are on a medication that helps a symptom, then that symptom no longer qualifies as a problem.  In my case the carbamazepine suppressed the pain from my Trigeminal Neuralgia.  These docs would then say that I "don't have TN" so that doesn't count as a symptom of MS.  That is just too DUMB and weird to comment on!

Quix
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This is just too reminiscent of the psychologists at the middle school telling me that my son was going to be dropped from his LD tutoring at school because he was doing so well!  They did, he stopped doing well, started self medicating soon thereafter and never finished high school.  (Finally got his GED in his mid-twenties and started college classes at age 31.)

I guess S.T.U.P.I.D. and D.U.M.B. aren't limited to MS Neuros.  

Please God, don't make me go down that road again.

Mary
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bump for the new people
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Thank you for bumping this!!  After reading this I feel more prepared for my appt with the MS specialist.  I cannot even begin to tell you how many of these "lies" I have been told.  The best one was the neuro that told me the spots were migraine spots, I told him I don't get migraines, he just stared at me, told me I do not have MS symptoms and that if I did have MS I would have more lesions (notice he admitted I had lesions), I did not know what to day to him. I just looked at him and said "what is it then?" He said  "i don't know...the symptoms go away right?  Then these will go away to." Then told me sometimes we just do not get answers.  I left the place in tears knowing that yet again I would not get any help.  Thank you for being so informative..I a, beginning to feel well prepared for this visit in a few weeks and am so thankful I found this forum!!
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bump

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bump for Charley
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Bump for Amers
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Great post!

Here is mine...........

1. *There is NO pain involved with MS

2. *It cant be MS because my patients only have one side of their body affected NOT both

3....This one was the kicker and made me boot this doc to the curb!!!!
     *I have seen this many times from woman who had a hysterectomy. Your hormones are out of wack and you will soon get your feeling back in your hands and feet, balance back, brain working better, tremors gone...etc etc
    
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It's time to dust this  one off again for all the new folks - and in response to Quix's response on the Myelin Repair Foundation blog which references this post.

http://myelinrepair.org/blog/?p=1942

If you didn't read this blog you might want to take some time to read another person's horror story on the road to diagnosis.

be well, Lulu
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Susieq brought up a new Lie which has to be added.

37)  These are only sensory problems and, thus, they don't count as an attack or they are not serious or they just are not important.

Quix
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Can I add - "You can diagnose hyperventilation syndrome by a quick hyperventilation test - have the patient breathe as fast as they can, and if they start to get dizzy quickly (as in, less than 5 minutes), then it means they chronically hyperventilate."

Ugh - I'm all for hyperventilation syndrome as a serious possibility for explaining some neuro symptoms, but this is just crazy!  ANYONE will get dizzy in about 30 seconds - this is not a real test!  

This neuro drove me crazy :(  He said some really wacky stuff...
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Thank you--thank you --thank you!!

Amazing.  

here is what my report says;

"her gait does not show 'true ataxia'.  She is very overweight which of course throws off her center of gravity and she can't therefore balance."   OK so what is true ataxia then?

" ....patient did not fall while walking..." (maybe becuase she was holding both my hands)

"...she has primarily subjective symptoms and at 52 this is too old for any of the demyelenating diseases".  

"Ms. ___ has a history of migraines 1999-2008 and COPD".  What?  I have migraines??  I have COPD?  Shouldn't someone have told me about these things?


Thank you Quix for taking the time to give us all the information on this forum.  I think this should be a HP if it isn't already.

Lois
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Soon after my Neurologist told me that I didn't have M.S. I questioned his judgement since another Neuro told me that I did and an MS Specialist had been treating me just a few months prior. He told me that "I'm not a specialist, but I AM a Neurologist, and M.S. falls within my realm". He then told me that "You should be greatful that you don't have MS right now". "This is good news!" Unfortunately I bought his B.S. until 2 years later when I had my "first" (in his terms) "definitive M.S. attack".
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i just love this "catchy" section here on this family forum!! i really mean it. every time i see it and read something here, i get such a great sense of belonging and humor.

and i know those that have been in limboverse for longer than say 18 months or so, know what i'm talking about.

what a great education this forum is for all of us and humorous too!  i know this section has had to have helped many folks become more of a well educated advocate for their diagnosis pursuit and having a much better idea as to who is truly trying to diagnose versus those that are dishing the run-around.

Hats Off to the MS family here!
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Thank you for these eye-opening posts. So really... when are you going to write that book. I'd been the first one to buy it.
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thanks so much!!! this helps so much, especially since I have just started testing and am waiting FOREVER to go back to the neuro.

I just love how they say migraine when they have no clue what is wrong with you.

thanks again :)
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It is "IMPOSSIBLE" to have MS and neurofibromatosis (a major neurological disorder) at the same time.

I'll skip all the details.  Even though all the symptoms did not conform to a clinical picture of NF1, 31 years later, "uhhhhhh, you have MS!!"  

Frank
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Here you go RedFlame :)
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thanks so much johnnymutt!!

Red
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Quix, just write a book for the public to read!  

Here's another lie:

You're too old for MS (I was 56).

Women your age have those bladder issues.  Kegal!

All any physician will do for you is recommend vitamin D.
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#38)  It is impossible to have MS if you already have another neurological disease.

Hmmm...this could only be said by a doctor whose brain made a break for it long ago.  Does this dimwit actually believe that one disorder is protective against another??  How neat that would be if we all had an allotment of "one" and that would be it.  After that no one would ever have to think again.  Of course, having two or more problems that affect the nervous system is the height of bad luck, we see it all the time.

Until someone proves that having the gene for Neurofibromatosis or some other genetically transmitted gene actually did make it physiologically impossible for MS to occur, our doctors must keep their minds open when new symptoms occur that are not readily explained by our pre-existing condition.  Hey!  This would be a new "pre-existing condition clause" in the McDonald Criteria.

Quix
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Hi Quix,

So true, sadly, so very, very true (the part about brains making a break for it).  And the one thing I forgot to mention is that this not only came from a neurologist, but also a neurosurgeon (same hospital) who supposedly had a great reputation as well.  That was back in 1979, not that should matter one iota.    

To this day, I can't for the love of God, understand why they said this to me.  Granted, I was being a real pain in the elbow, aggressively (not inappropriately so) pursuing the issue of MS.  On one hand, they were more than accomodating in ordering exhaustive diagnostic tests, so on some level they were obviously listening to what I had to say and must have thought it possible.  I had repeatedly told them that I had researched the issue to death and that many of the symptoms simply did not conform to a clinical picture of NF1 and that there was obviously some other disease process at work.  But to no avail.

Not until the last few years did everyone seem to listen more intently.  It's ironic in that the MS clinic I attend at the Univ. of Rochester (NY), I am one of 4 people with NF1 with MS.  Anyway, I guess I gave up trying to understand it a long time ago.  I thought it might be an interesting tidbit, so-to-speak to add to your original post.

Be well Quix

Frank
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This made a great bedtime story - thanks for taking it down off the shelf.
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Frank,

Are you in the Rochester area?? I'm just outside Rochester (a couple towns east of Webster!)
~Jess
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I can't remember if this was already in here.......

....MS is a womans disease

Soooo....I'm a woman?

Mike
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Thank you thank you thank you!  Although my neurologist has not told me any of these lies, an ms specialist I went to for a 2nd opinion did dismiss my attempt to discuss the episode of major depression with severe vertigo I believe was my first major flare.  I had many sx before the depression,but they were minor and I did not realize they were related to each other.  I did think a lot of it was normal aging.  

Once the depression began, I became a nutcase, and that was that.  I had ms symptoms for at least 8 years prior to dx, but no one ever suggested a neurological origin.  Once I became a nutcase of course, I minimized my symptoms and even hid some of them from my doctors, hoping I could move past the nutcase label.

So, that was 8 years without treatment and 8 years of suffering wondering if maybe the doctors were right and I was crazy after all.  I am NOT the sort of person who sues.  All of my adult life, I have worked for hospitals and doctors and I am opposed to holding physicians to a higher standard than we hold ourselves.  Everyone makes mistakes, doctors included, and they cannot be expected to know everything.

But, this was a large chunk of my life and had a huge effect on my self esteem, my career, and my marriage.  And there is no way to know how much my health will be impacted by the delay in treatment.  I feel so frustrated.  I don't want $$, just an acknowledment that I didn't receive the care I deserved and a promise not to be so quick to label other patients as nutcases.    
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Quix,

You have outdone yourself!!  What a masterpiece!!  This should be bound up in a book for all new arrivals and longterm residents of Limboland!!  I am exhausted from laughing so much while reading your observations!  Feel like crying too, because I've experienced most of them.

One thing that bothers me so much is that some MS associations even reinforce the 20-40 age discrimination for MS diagnosing.  On the back of the envelope one of the MS associations had sent me asking for a donation was the statement that "MS occurs between ages 20 and 40."  Needless to say, they didn't get a donation from me and I explained why with the suggestion that they revise their parameters about the ages for the appearance of MS to reflect the reality that even older folks can be diagnosed with it. I also reminded them of the vast difference there can be between "age of onset of symptoms" and "age of diagnosis."  Doubt they listened.

Even the wonderful sleep neurologist who diagnosed me with sleep apnea, refused to entertain the idea I might have MS.  He just said, "Statistically, statistically ...  at your age . . . ."  The med schools have brainwashed them about 20-40!!!

In every frame of our MRIs, the radiologist sees our age.  Wouldn't it be wonderful if we could leave that info out - or just say we're in our 30s???  How would that affect the radiologist's conclusion?

Last summer when I was in the ER, the nice young doctor confided to me that, on evaluating my symptoms, it didn't seem like a stroke to him - rather, my symptoms seemed like MS to him (but he refused to put that in writing).  

What is it that is causing such reluctance in this country to diagnose????  I have my theory . . .  and it involves money . . .  Think about it.

WAF



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Karen --

I just seriously laughed my butt off.  I can't believe your neuro said, "You don't have MS.  You don't want MS anyway, it's an insurance nightmare."  What?!?!?  

That's *exactly* what I was thinking too when I was diagnosed.  My first thought was "omg!  It is going to be so hard to submit all these insurance claims!".   (note sarcasm)

Docs like that should be taken "out back" and flogged.

jean
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Do you think women that are diagnosed with MS after fifty carried the disease without knowing in their 40's?  I am beginning to wonder.  So many in the age 50 range seem to have a more severe form?  It seems like we are not moving as quickly as the younger ones diagnosed?  or is it our age and inability to fight as hard?  
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#38)  You can't have MS because you're not a woman.

Oh, my.  Who is going to help me write letters to the 60,000 or so men in this country alone with RRMS telling them to go find another diagnosis.  This one is for the female persuasion only.  And who is going to tell the 25,000 (or more) men with PPMS that something else is destroying their function.  This is going to be a nightmare!  And cost a fortune in stamps!  They are going to be REALLY mad.  Any volunteers?
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Dear sir/madam/or other,

It has been brought to our attention that you have been diagnosed with MS, we are pleased to inform you that this can not be possible due to your [insert excuse here]. If in the near future you [get younger/change gender] please feel free to contact the office of bogus medial excuses, so we can update your file.

Yours sincerely

DR I. DontknowwhatI'mtalkingabout
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Do you know what's sad? I've probably heard about 95% of these lies while trying to find a diagnosis....It seems like it an epidemic amongst neuros to make up their own version and there own interpretation of the McDonald Criteria. At least the ones I've seen so far ☺
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Blimey, this is a long thread......

Thanks Quix.

I know of late I have been so tempted to ring the b***ard neuros in Queensland and say LOOK HERE, YOU USELESS MORONS!

I got so incredibly angry when my LOVELY new neuro here in Canberra (any of you aussies want his name, just ask) said, "Oh, look, 3 lesions on your cerebellum which neither the neurologists nor the rediologists have commented on"

He said they would account for my balance being so bad?

I also wish I could yell at my mother, who took the drs words as gospel and considerd me a nutcase. GRRRRR.

Actually the thing that most annoys me is they - drs- seem to think it must be this OR that, not This AND THAT AND maybe Something Else
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This is well on its way to becoming a health page, thanks to Lulu.  Here are a couple more Lies, but without "elaboration".  I'll add that later.

You have nothing to worry about.  You have Benign MS.

I don't have to look at the MRI.  The report tells me all I need to know.

Any neurologist can diagnose MS.  That's our field.

Quix
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I Love it! "You have nothing to worry about.  You have Benign MS." I was told this 2 years ago...that's 2 years before being in a wheelchair.

BENIGN MS CAN BECOME MALIGNANT AT ANY TIME!!!
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Thanks for speaking up on this.  I will include your comment when I write my rebuttal to that particular - and very common - Lie.  I don't believe that anyone's course can be called "benign" until the very end.  Benign MS is a post-mortem diagnosis!  I sorry that happened to you.  Have you tossed it back in the idiot's face?

Quix
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One of the things i think would be really really helpful to people facing these common mythalogical-gobldy-goop comments from our less than informed neuro's, would be standard replies. Think about it, if everytime a patient responds with the same logical and valid queery, maybe these common furphies would start getting noticed more for what they are.

eg for a patients told they have Benign MS, a response could be something like... How can you determine the MS I have IS benign, correct me if i'm wrong but isn't Benign MS a post mortum diagnosis and the last time I checked, i'm still breathing!?

I'm thinking along the lines of if something is said often enough, even if it is totally untrue then that untruth becomes believable, which is why propoganda (sp) works so well. I've wondered why these 'Lies' are so commonly held beliefs across the world, there has to be a grain of truth behind it but that grain is way out of proportion to the reality of people's experience prior to dx. So where is it coming from and why isn't the medical world keeping up with the reality of the patients dx with the disease(s) they are suppose to be treating, surely living with a disease holds more weight than learning about it at medical school?

Just a thought!

cheers......JJ

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Hi Quix,

I'm in the course of tossing it back in the idiot's face now. As I'm sure you've read from my previous posts, I saw a Specialist who prescribed Rebif and then saw this quack who called it Benign M.S. and refused to prescribe any more Rebif. I was off of Rebif for 2 years. Unfortunately my HMO wouldn't pay for the Specialist's prescription.

Thanks for adding my comment :)

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Hi, Summanadevii,

I just read your question to me:  Do I think women diagnosed with MS later in life carried the disease in their 40s?  Quite simply, my answer would be "in some cases, yes" (in some cases).  Actually I am aware of a woman who got finally diagnosed at age 70!!!  She was told she had MS for likely 3 decades (which would put her at 40 for age of onset).  

As a teenager, on my routine physical exams I remember the doctors always telling me that I had "nystagmus" (whatever that meant - no one ever explained what that meant, I never knew what it meant, and so what - no one seemed to care that I had it).  I also remember inexplicably needing more sleep than normal in my 20s and 30s along with spaciness that would come and go inexplicably in my 30s).

On the other hand, I bet probably most people coming down with MS in their later years didn't have it earlier.   They just get a more fast-track kind of MS for the first time in later years.

WAF
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i am 69; i have MS.......i only told the doctors for 10-15 years that i had it.  bt they assured me (with no tests done) that i did not have it.  i was suffering so and sleeping aabout 20 hours a day.  the day before we went to florida (when i was 67) the doctor in illinois called me (after an office visit with him), to tell me i definitely did not have MS.

went to my florida doctor (who i pay yearly) and told him i was sure i had MS.  went for MRI that week and the neurologist.  he said the report said "vascular changes"; he said that he hard to believe with what you've told me and i am going to ask for the film."

he got the films, put his head on his desk, and said "i am so sorry to tell you that you have had ms for about 20 years.  he said that my age told the reader was the diagnosis was.....people at 67 are not dx. with the disease because it is a young person's disease.   i guess all those trips to the doctors when i was younger saying i couldn't see, balance so off i had to stay in bed, etc. etc.--guess those were not good enough for tests.

  he said he never had a patient my age.  how about that.  ain't that a cake walk.  what a dear man he was and is.  he understands, he listens, he is amazed that this happened.

my story and i'm mad as hell.

lorrie
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LOLOLOLOLOLOL!!!!!!

oh my, this thread is almost crashing my computer.  i will read it in more detail when i am at a better comp.  

i read a bit of the top, and a bit from the bottom and the one that had me laughing so hard was # 38...your bit quix about contacting all of the men in the states who will need to find another dx.  

thank you so much for the laugh, and also for the gift of being prepared lest one happens upon such remarks...

xo michelle
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Here's one for the list.

You need to know that about 5 weeks before all my neuro symptoms started I had fallen and broken my elbow.

After many tests my neuro sugested a 2nd opinion. So 6 months after I had broken my elbow I am sat in 2nd opinion neuro office. I have to point out he did not have my records or had bothered to look at the MRI. ( the MRI shows one lesion, the only thing that has supported the symptoms I'm having).

He did a quick examination, and took my history and then suggested that the problem could be psyhcological because ( here it comes) "it is hard to go back to work when you have been off sick!"

So I pointed out that actually I had not had anytime off work as I'm self employed and if I don't work I don't get paid and it would have a knock on effect with the way the business is run. (we had talked about what I did much earlier in the conversation which he obviously hadn't listen too.)

He quickly moved on to say he didn't think I had MS because my symptoms come and go! I was so confused at this, the only symptom that had come and gone was the pain in my shoulder which was a direct result of the fall which was sorted by a steriod injection in my shoulder, every thing else had stayed. At this point I had rulrd out MS because RRMS symptoms did come and go as such and mine did not. yet he was saying the opposite.

He was very pleasant in his manner, he suggest some drug treatment  but would not prescribe them as I was not his patient. When I look back now it was a comeplete waste of time. I have since had a psyhcological assessment and I am officially not psyhco
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Incredible! An absolute "must read"!
Thanks, Q. You're amazing!
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Thanks.  this turned out to be an important thread for people who had had their share of dull doctors.

#41)  You can't have MS if you can
           a) Stand on your toes
           b) hop on one leg
           c) walk on your heels
           d) see
           e) ____________________(other at the neuro's discretion)

#42  You can't have MS if you have ever been on disability.  You are just faking it.
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Fit me in under #21.

14 lesions, several juxtacortical, two in the corpus callosum and numerous periventricular lesions.

Second visit: I'm glad to tell you that you don;t have MS. Your lesions are not the right size or shape for MS.

Six month follow up MRI with new lesion, largest lesion going from 7 mm to 10 mm. Asked what else it could be if I have lesions in the locations mentioned above. Told straight out that location does not matter.

Audrey
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Neuro #  3  told  me, Iv'e looked at your MRI report & I'll look at the MRI disk later,  otherwise, I not really sure whats going on yet.       LATER--  well its a year later and I moved on to another Neuro,  but I can't help but wonder,  Did #3  ever look at the disk-


The MS Neuro  had no problem giving me and wife the DX on the day of our first visit with him.

Like they say in real estate,  Location-Location-Location-                        
                       WELL its the right MS Neuro for sure ..get to an MS Neuro!!!


Johnniebear
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Location! Location! Location!  The right location is the office with a thinking neuro inside who is well-versed in MS!  And who will LISTEN to you, LOOK at you and the evidence and  then THINK about it all!

Q
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Thank you for making me feel like I am not crazy.  My current neuro got mad at me this last visit as I "had too many symptoms" and they weren't in the right category, whatever that means.  She also barked at me because I could walk a straight line heel to toe.  Told me I wasn't concentrating.  I am going to be getting a Brain MRI soon but not holding my breath as I imagine if something shows up, it will be explained away.  I am not faking my symptoms and I just want to cry now.  I so appreciate everyone's postings here, I don't feel so alone anymore.

CindyLou
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Ok, so after reading this wonderful post, I can understand why alot of docs. will give the run around on giving a dx. I know that with the McDonald Criteria you basically need to have two attacks seperated at different times and have an abnormal finding on a neuro. exam.

As my doc. stated to me, I have a clear MRI, which as some have pointed out, people have had lesions show, but the docs. claim are not enough for ms. Could my neuro. possibly have withheld info from me because maybe their weren't enough lesions? Or because I smoke?

I say this because, I have had an abnormal neuro exam, (hyperreflexia) . I have had three episodes of speech slurring lasting up to two weeks, seperated by two years and the last one was 11 months later. I have had, all of the eye symptoms that go along with ms, double vision, optic neuropathy, and nystagmus.
I have had face pain, stiffness and cramping.
Dizziness for 8 months, tremors, fatigue, vibrating foot, twitching muscles, word finding, noise intolerance, depression.
And, about 9 years ago,, I could not lift my legs up except using my hands.

I think my docs. need to re-read my list and stop misdiagnosing me.

I believe they are lying most of the time to keep their waiting room moving along.
I was also told that if I have MS, I would have more symptoms that are permanent,,,
well if that's true,, would my eye problem with the optic nerve be considered that, because its permanent??

Sorry for blabbing on and on, this post had me thinking,
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Sorry, I mean't to say that I could "not" a straight line heel to toe. See, even my typing is off.  My symptoms are fatigue, MS hug (that just happened last week and was really weird!), numbness, pain in legs, memory issues, dizziness, balance problems, weak legs and sometimes arms, headaches (stabbing, cluster), blurred vision, eye pain and vibrating eyes (back & forth), my sense of taste and smell became "off", shocking pain in neck.  I have been battling severe foot pain which I have been told is idiopathic peripheral neuropathy for 2 years.  Now all these symptoms hitting me in a 2 week time frame.  And I am not diabetic, I have had so many diabetes tests, it isn't funny.  While I don't want MS, I really hope to find out what this all is and not be yelled at by my Doctor.  
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What other service professional (contractor, hairdresser, mechanic) would you allow to "Yell at you?"  Now, in the same breath, you can't cry at your contractor or mechanic (not sure about hairdressers,)  You have to approach this as a professional cooperative exchange (a health care negotiation.)  Most doctors want you/us to get better or to halt the  disease process (a win/win negotiation.)  Even the ones that don't act too bright.  We have to play by the rules of their profession.  What have we ruled out?  What is left to rule out?  What is the next test?  If they diagnosed idiopathic peripheral  neuropathy, do you have an abnormal test to back it up?  Peripheral nerve biopsy?  Something. What is to prove that your loss of sensation is peripheral?  What points to it have no know cause (idiopathic?)   Like in my day to day job, you have to take emotion (including frustration) out of the discussion.  

I really think that if we make a chart of what it isn't and what had been proven, we will get more done,  Remember that your symptoms are subjective and the doctor can't see them,  We have to describe them and they have to test to see clinical signs.  Anyone who diagnosis idiopathic anything right off the bat without testing, is taking a short-cut and they deserve to be called on it.

Read back through how we describe "symptoms."  Maybe we should write up a description of tests and the relevant clinical signs.  I really rhing that the docs look at the test results (LP, VEP, MRI)  It is something they "trust" and can stand behind.  Symptoms are another issue. I also think that many of us have symptoms well ahead of any visible lesions on the MRI.  Yep, neurologists are rushed.  Their are not enough of them and there is a lot of neurologic disease  out there thanks to heavy metals, our use of organophosphates (something else that need to be ruled out with neuropathies,)  etc.

Try and find a doctor that wants to cooperate and make the patient part of the heath care team.  Just my two cents worth.

Bob

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Thank you Bob for your input.  I understand about being professional and act accordingly with my Doctors. And I don't and didn't cry at the appointment.  She was the one who was barking at me. I had a written down some things I wanted to talk to the Neruologist about but she didn't want to talk about my recent symptoms.  I understand that they have a difficult job, but I am not trying to be a problem.  I told her that the foot pain may not be related at all to the recent symptoms, just wanted to let her know what was happening. She did put down on my MRI form to check for demylinating disease, so I hope to get some answers. I am not a doctor,  nor am I trying to diagnose myself, hence the Doctor appointments.  My insurance is limited and I don't have any other Neurologist that I can see.  Perhaps she was having a bad morning.  I guess my case frustrates her.  She just keeps telling me that there is no cause for my foot pain that she can determine.   I don't like to take pain meds like tramadol (they make me sick) so only take them rarely.  I have come to grips with having constant pain, but now with these current symptoms, I am barely able to function on some days.  I can't lose my job, that would be very bad indeed.  Anyway, just wanted to clarify that I don't ***** at my Doctor and am cooperative.  If an opportunity to change insurance comes up, will probably do so if I can choose my Doctors.
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OK.  I wasn't accusing you.  There have been several posts about how folks deal with their docs.  I was trying to see what was going on.  If your appointment started that way and continued, then something is very off.  Your provider should be acting more professionally.  
You might consider contacting your insurance company (directly or through your employer)  and let them know that "your case seems to be frustrating your provider."  They can alway choose to send you to another provider.

Bob
  

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I am sorry Bob, please accept my apology.  I realize that after re-reading your post, I mis-understood your meaning. You are correct in saying that the Doctor should provide proof of diagnosis.  I am hoping that after the next tests, that I can get a referral to UCLA neurology dept.  But I have to go thru the steps first. But if that doesn't work, will contact the insurance directly.  I hope to hear from the insurance next week to schedule the MRI. Feeling so wiped out, need get to bed.  Take care and thank you for your comments.
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BUMP
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The topic of pain in MS came back up so I'm bumping this baby for all the new people.
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Wow! I think I read this before, but it really hit me now. I'm going to copy that and print it out so I can read it over again when I need a reminder that my "imaginary" pain is from MS cause pretty much all your pain spots - new headaches, neck pain, etc. has been attributed to stress, and told MS doesn't cause a whole lot of pain...grrrr.
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It is tine to dust this classic off and bring it up for all the people struggling with Neuros .....
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I retyped the comments to read "fibs that lazy neuros tell...a/k/a stay away from these people" and put it on a page in my medical book marked "miscl" and thought my new wonderful neuro would roll in the floor laughing.........................

thanks for this thread
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Sarah, I would tread very carefully with your neuro, especially letting on that you are spending time on line in this community.  Some doctors are very threatened by the fact that patients can find all sorts of information out here that challenges their authority.

One of the quickest ways to be shown the door and given a non-diagnosis is by telling a doctor that we read about MS online.

best, Lulu

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Oh Lulu, I do luv you however, my new neuro is well aware I am a nurse and don't take anything doctors say as gospel.........we have great conversations.  It bore absolutely no resemblance to where I got it from I only did so because I knew he would take it in the right way...........

Everyone have a super day!
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Thank you for bumping this. I needed it. (As you know)

My Neuro and very brief consultation with the MSologist (which I later found out happen to be part of the same clinic for years) are guilty of many of the above "lies."

I opted to move on. I called StarryEyes clinic locally and had a nice little chat with the nurse there to get my referral.

I am so tired. If I wasn't concerned that my vision or overal health was at risk, I would have given this a break. I am concerned though if I let it go then I will lose something even more valuable than I already have lost. Fear is keeping me motivated. :(
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Bump......because I like this thread
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/wingnut slowly creeps into the convo to add her 2 cents

My OTF Neuro is STILL waiting for the neon sign inside my brain, flashing: "MS LESIONS! MS LESIONS! MS LESIONS!"

Hello to all! I miss you! ♥♥

/slips quietly out of the room
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This should bring a smile to a few faces........Took about 10 of the best excuses and listed them on a piece of paper, 1 to 10, and then took them to neuro #4, upon seeing him for first time.  

Said, I want to clear the playing field.  Please read this.  If you truly believe any of these myths, I will shake hands with you, say good bye and leave.  I will not waste your time or mine.  We each need to know where the other is coming from.

He read them, smiling as he went, finished the list, looked at me and said "you cut to the chase, don't you?"  I said yes, I have no time to waste on doctors who don't do their own research or believe what their patients say.

He said "then we are both on the same page and I will be happy to have you as a patient and will only tell you the truth........."

End of story was that after 3 idiots, this one listened to my entire list of s/s, problems, did his own tests, explained each and every one to me, and Dx'd..........looking at Copaxine at winter visit (I have to travel 4 states to get to him) and now finding that Shared Solutions discounts do NOT apply to anyone on or associated with Medicare...............

tis ok, at least I have a GOOD neuro,
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Wow, Sarah, that's great!!  

Most of us have already read this long thread, or a lot of it, so may not look at this update. So could you post your news again in a new thread? I'm sure Quix and many others will be delighted to read it.

Best of luck with everything,

ess
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can you bump it up then?  I don't know how to bump.......
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Bump means make this thread show up on the front page. Adding a comment bumps the thread. So it's bumped.

But a lot of people don't read old threads like this one (started a long time ago), even if they're on the front page. Ess was asking you to start a new thread.

You can copy the text of your comment (which I loved!), go to the main page of the MS forum, click on New Question or Post a Question or whatever... big, orange button. Then paste your comment there. I'm sure people will get a big kick out of it.

By the way, I feel like mailing Quix's original post to all of my former neuros, lol.
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Bumping is just a matter of writing a new comment in a thread, because any new comment will move the thread to the top (provided you have set it so most recent post goes to the top, which is the default. If this doesn't make sense, look above all posts for forum settings.).

So by writing this, I am automatically bumping it to the top.

What I was asking you to do, though, is to start a whole new thread about your wonderful and daring encounter with your new neuro.

ess
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Thanks, beach. We were writing at the same time, but you explained it better.

ess
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SAra- I LOVE this story.  Would you please copy it and start a new thread so others can see that the direct approach can work?  Congrats on finding a good neuro - we keep swearing they are out there.
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Golly, I think I've heard almost all of those. No lesions, no MS. Maybe it's a stress reaction. The tremors are from anxiety. It's a pinched nerve why your urethra shoots urine out unexpectedly. It's psychological. You must be depressed. It's migraines. Nope, not enough. It's complex migraines. Many people have problems with the heat. There is nothing wrong with you.

It's really hard not to get down on yourself when these mantras keep getting repeated ad infinitum and the cash register keeps chinging along the way.

So if I ever do get the one brain lesion required to meet the MSologists criteria for making a dx, will I then get told it's my age, from smoking, or from migraines, despite the fact I've had no lesions from any of those yet?

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can you bump my response or start a new thread with it, I don't know how, know you suggested it.
ty
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I did it Sarah.
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Wow, it was nice to be missed. *eyeroll*


I'll come back and say 'hi' in another couple of years. Toodles! :)
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For our new folks with us who are in Limboland - I thought you might appreciate comparing notes............

Lulu
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thanks!
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Hi all,
I know this thread has been quiet for a while but I thought it was fantastic. I have heard so many of these things from neuros I saw in 2005/2006 when I had a lot of unexplained sx. 7 or 8 'white spots' in sub cortisol white matter on MRI (aged 33). Radiologist said more than would be expected for age so MS can't be excluded. LP clear. Told it was all in my head, although I have continued to have left side weakness, especially in my leg (can't wriggle my toes most days, and when it's bad my leg drags as my knee weakens). When I started seeing my new partner back in 2011, he asked why my left foot wasn't as ticklish as my right (he liked to give me foot massages while we talked after work at night). It's just kind of numb most of the time.

Over the last month I've had a worsening of symptoms - couldn't move my left hand for a few days, got out of bed and collapsed on the floor when both legs gave out. Had my legs give out on another 2 occasions. Had an MRI last weak, and the technician gave me contrast as she had seen 'a couple of white splotches'. See neuro in 10 days - this thread has restored some of my confidence in be able to ask questions and maybe get an answer.

PS. I live in Queensland, Australia.
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My son was dx with MS at age 27. I was having some weakness issues myself. Age 53 at the time. Clean CT scan. Two years later I am having fatigue, numbness, tingling, lightheadedness, memory loss, confusion and on and on. The MRI showed  "numerous lesions in the frontal lobe with largest being 1cm". The neuro said I am too old for MS, my neuro exam was fine, I could be depressed and all people have brain lesions as they age.  Also, outside mention of early onset Alzheimer's :(. Time for a different neurologist?
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Hi Terrill -

I'm not sure there is "too old for MS". I was 50 when I was diagnosed. While there is no real hereditary link in MS, there is an increased likelihood within immediate families. It may be that you actually had MS "before" your son.

Does your son see an MS specialist and is this the dic who brought up Alzheimers?

Kyle
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Before seeing the Neurologist the Physiologist suggest I go on Prozac.  I was so firm with my answer, "No!"  That he almost immediately replied, we don't get paid from Rx companies to push these.  I won't take that crap.  He suggested because I'm a single mom with children that the stresses of life must be causing my symptoms.  UGGGH!  I said, "Before you diagnosis me with depression be sure I'm not surrounded by arseholes first!"
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