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147426 tn?1317269232
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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Page 8 of 8
1386048 tn?1281015933
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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338416 tn?1420049302
bump
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1218873 tn?1300094816
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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465013 tn?1289264742
Incredible! An absolute "must read"!
Thanks, Q. You're amazing!
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147426 tn?1317269232
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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1260255 tn?1288658164
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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900662 tn?1469393905
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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147426 tn?1317269232
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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1490607 tn?1288383290
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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1490607 tn?1288383290
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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1453990 tn?1329235026
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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1490607 tn?1288383290
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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1453990 tn?1329235026
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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1490607 tn?1288383290
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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147426 tn?1317269232
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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572651 tn?1333939396
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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572651 tn?1333939396
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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1475492 tn?1332887767
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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1140169 tn?1370188676
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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1740498 tn?1328966185
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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572651 tn?1333939396
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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147426 tn?1317269232
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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572651 tn?1333939396
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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5504286 tn?1369696842
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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1831849 tn?1383231992
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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5340584 tn?1436673208
So true Cathy! I've been told all them and then some!

I will write more at the very end of this comments thread to add "lies" I've been told by my Neuro.

I know this is an old post but I just love it and wanted to light it back up again. :)

Thanks for your input!

Ree
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5340584 tn?1436673208
Hello Quix!

I am bumping this up. I read it a while ago and recentley posted this link on a MS forum I'm a member of. I find this article to be SO important for those undiagnosed; even those diagnosed, the medical community and our family/friends. They should all read it in its entirety.

Besides being extremely ingenious and informative and VALIDATING it is absolutely hilarious. I laughed and laughed and continue to every time I read it again (like tonight lol).

Please, please update us on the status of this becoming a Health Page. I also urge you to write a book with the title of this article.

I can not thank you and all the other members who have posted here and shared their stories. I have a doozy of a story as well that I will share tomorrow. Your stories have validated me and I now realize I am NOT crazy, that I absolutely have MS and I just need the right doctor. Actually I am seeing a MS Specialist March 10th.

Again, I will write about my story. Hopefully it will help others too and some of it may be added to the list of "Lies My Neuro Told Me".

Thank you, thank you, thank you Quix and everyone else SO MUCH!!!

Ree
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1831849 tn?1383231992
Hi Ree  - Greetings from a fellow Long Islander.

Quix spends most of her time tending to her 3D life an pokes her head in here very occaisionally. I didn't want you to think our resident MD was ignoring you :-) This thread continues to be very helpful however. THanks for bumping it.

Kyle
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572651 tn?1333939396
This is a health page  which I put together in 2012.  It makes for a bit easier reading and combines common themes...


http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lies-My-Neuro-Told-Me/show/1265?cid=36


JJ - supermum - added more lies on a post about this HP-

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me---New-Health-Page/show/1777207



best, Laura

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5340584 tn?1436673208
Thank you Laura and Kyle,

I want to share my story with everyone but especially want Quix to read it. I am not sure where I should post it. Should I post it here or start a new thread?

My story is a doozy and can help a lot of people to gain more insight / validation. I am still in limbo land but going to a specialist in August at NYU.

Praying for a DX.

Thank for your posts and please let me know where I should post my story for everyone and Quix to read (and sigh and laugh and get angry lol)

Ree+
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987762 tn?1331031553
Hi and welcome,

I suggest you do post your story, but it would be best if you open up a new post a question box, found at the top of any page. btw Quix is inactive and will probably not be able to respond but we have a good community and some one should be able to provide you some help and insight...

Cheers..........JJ
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5340584 tn?1436673208
Hi JJ,

Thank you for your reply.

I am sorry to hear that Quix is not feeling well. :(

I do, however look forward to sharing my story with this community and getting to know everyone!

I will start a new post via question box.

Thanks Again!
Ree
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Fantastic and informative MS thread! It took me 32 years to be diagnosed with MS and I have heard all the same lame excuses from Docs you all mentioned in this thread. My advice if you are still in "limboland" without a dx is to get a 3T MRI and see a MS specialist that works in an dedicated MS clinic, not just a general Neurologist. The MS Center at Cleveland Clinic is great and they are not shy to diagnose.
The stupidest thing I was told by a Doc was that my symptoms must be due to watching too much TV! LOLL!!
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