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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"


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.

154 Responses
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!

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.


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.

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.  

Avatar universal
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,
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.

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

648910 tn?1290666683
As usual, Great job Quix!   I think many of the new members would especially.
Avatar universal
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          
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
Avatar universal
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!

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...

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