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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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Avatar universal
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!!
Helpful - 0
5340584 tn?1436669608
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
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
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
Helpful - 0
5340584 tn?1436669608
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+
Helpful - 0
572651 tn?1530999357
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

Helpful - 0
1831849 tn?1383228392
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
Helpful - 0
5340584 tn?1436669608
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
Helpful - 0
5340584 tn?1436669608
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
Helpful - 0
Avatar universal
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!"
Helpful - 0
1831849 tn?1383228392
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
Helpful - 0
Avatar universal
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?
Helpful - 0
5504286 tn?1369693242
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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Avatar universal
thanks!
Helpful - 0
572651 tn?1530999357
For our new folks with us who are in Limboland - I thought you might appreciate comparing notes............

Lulu
Helpful - 0
Avatar universal
Wow, it was nice to be missed. *eyeroll*


I'll come back and say 'hi' in another couple of years. Toodles! :)
Helpful - 0
147426 tn?1317265632
I did it Sarah.
Helpful - 0
Avatar universal
can you bump my response or start a new thread with it, I don't know how, know you suggested it.
ty
Helpful - 0
Avatar universal
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?

Helpful - 0
572651 tn?1530999357
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.
Helpful - 0
Avatar universal
Thanks, beach. We were writing at the same time, but you explained it better.

ess
Helpful - 0
Avatar universal
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
Helpful - 0
1740498 tn?1328962585
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.
Helpful - 0
Avatar universal
can you bump it up then?  I don't know how to bump.......
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Avatar universal
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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