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Lies My Neuro Told Me or (Common MS Myths)
by Quixotic1, Oct 11, 2009 10:19PM
, Oct 11, 2009 10:19PM
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
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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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
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
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
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
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
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
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
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
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
Now, on to deal with my flair that started Friday night...
Guitar_grrrl
"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.
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
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?"
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.
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.
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!
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 ...
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Depression-and-MS/show/752?cid=36
Quix
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
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!
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
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
"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... :)
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
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
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 ...
Debbie
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
"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
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.
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
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
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
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
"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
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.
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
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
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
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?
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.
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
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
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.