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147426 tn?1317265632

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
154 Responses
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739070 tn?1338603402
Well said. Glad it's going to be a Health Page.

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

Thanks for taking this on!

Ren
Helpful - 0
405614 tn?1329144114
Thank you, this is great, especially as I'm ready to visit neuro #4.  I'm have to believe he's not into any of these myths.

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

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

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

Thanks again for putting it all together for us.

Kathy




Helpful - 0
147426 tn?1317265632
Hi, Ren,

I reread my comments and stated one thing quite unclearly.

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

Q
Helpful - 0
147426 tn?1317265632
When we get the "We'll just have to watch and wait" line we need to be assertive.  We need to ask, "Wait for what?  What is it that will convince you that I am suffering here and my quality of life is nil?  MS has been strongly suggested by several doctors and everything else has been ruled out."  You can then very clearly state the number of attacks you have had, mention the number of abnormalities that have been documented - even though the doctor did not remember then by the time she dictated the note, mention the exhaustive "rule-out" that has been done and then note the 30+ brain and spine lesions.  Ask why this doesn't add up to MS.

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

Quix
Helpful - 0
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,
Karen
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
I think this is quite important, not only to the mental well being of us limbo landers but sometimes we need to find the courage to keep looking for the holy grail, the dx we seem to need before we get any help or compasion from the medical fraternity. A few others you might feel is worthy of inclusion are:

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

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

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

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

Cheers........JJ
Helpful - 0
611606 tn?1315517767
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

Helpful - 0
648910 tn?1290663083
As usual, Great job Quix!   I think many of the new members would especially.
Helpful - 0
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          
Helpful - 0
704043 tn?1298056844
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
Helpful - 0
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!

Karen
Helpful - 0
738075 tn?1330575844
Brilliant!  My heart goes out to all the limbo dwellers on this forum that have to put up with this B.S.

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

Guitar_grrrl
Helpful - 0
559187 tn?1330782856
Here's another "lie" i was told by my first evil neuro:

"Your oligoclonal band test was negative"  he said.  

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

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

Thankfully I moved on to a different neuro who see's the world as it really is and not through the eyes of the Mayo.  
Helpful - 0
198419 tn?1360242356
This is absolutely outstanding!!!!!

Thank you so much Doc Q.

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

-shell
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1054985 tn?1257173275
Thanks for that it was a good read!!!
Helpful - 0
704043 tn?1298056844
  thanks! karen  reading this was kind of funny ... but as u laugh through the tears!!!  tick
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410281 tn?1254229064
I've been wondering when I will start fighting again after my last neuro visit - silent migraine my a** - maybe it's time.
Helpful - 0
279234 tn?1363105249
Love this post!!

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

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

Another neuro told me that nonspecific lesions do not occur in MS. I have 4-5 nonspecific lesions but they say half the population have these, and they mean nothing. But my question to him was, "Does that half have my symptoms and abnormal neuro exam?"
Helpful - 0
883901 tn?1294000772
What a fascinating post. I am in the Limboland & to be honest feel like giving up as I really feel I am hitting my head against a brick wall, so much for the NHS mmmm.

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

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

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

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

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

What am I to believe anymore!!!!! But with what you have written is so good to know as maybe I can say something.
Helpful - 0
147426 tn?1317265632
Wow, I'm amazed at the reception of this thread.  It looks like time to add some more to the official list.

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

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

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

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

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

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

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

14)  This is all due to stress/anxiety

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

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

15)  This is a Conversion Disorder

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

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

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

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

17)  "You're just getting older."

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

18)  "There is no pain in MS"

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

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

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

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

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

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

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

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

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

I am going to quit here and finish up later.

Quix

The thread is still open to comment and new subnissions.  Applications to the Tiddly Winks tournament are available at the office.
Helpful - 0
405614 tn?1329144114
Ooh, I forgot, neuro #2 said something to the effect of : you would to have had MS for around 20 years to have as many lesions as you do, so your lesions aren't from MS.

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

Quix, I totally enjoy the way you write!
Helpful - 0
848718 tn?1257138801
Brilliant!

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

Helpful - 0
147426 tn?1317265632
Depression can be a very huge part of MS.  this HP explains it further.

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

Quix
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
The timing couldn't of been more poiant (sp) i've just had a neuropsychological exam and even though i've dropped at least 2 standard deviations in IQ points i'm still in the normal range so therefore i'm not showing any cognitive decline. Can that one get added please i think dropping 30+ IQ points is a significant decline, dont you?

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

Cheers.......JJ
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