Aa
Aa
A
A
A
Close
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
Sort by: Helpful Oldest Newest
Avatar universal
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,
Helpful - 0
Avatar universal
/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
Helpful - 0
1140169 tn?1370185076
Bump......because I like this thread
Helpful - 0
1475492 tn?1332884167
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. :(
Helpful - 0
Avatar universal
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!
Helpful - 0
572651 tn?1530999357
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

Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease