Misdiagnosis of MS?

[PT123]

Hello,
I firstly had a lesion in my spinal cord at the base of my brain which lasted about a year. From this I got severe buzzing when I tilted my head forward, this got strong after only a few days - it spread through my feet and my fingers upon neck flexion. I got an MS eye test to check for optic neuritis and this came back clear. I then had another brain scan (as the first one was clear) and this came back with a lesion in my frontal lobe. I started Teriflunomide as treatment immediately as my neurologist said I had MS. 3 years on my scans constantly came back clear... I got a second opinion, and he seems to think I don't have MS and the 2nd lesion that was picked up doesn't look like a MS, more so an error in the scan. I am now off my drugs (3 months) and on a washout to get the drug out of my system. It's going to be a long road to find out if it is not, waiting and waiting, scans etc. Do you have any advice on this? does this sound like MS? I have read a bit about Transverse Myeltis and 85% who have a symptom of TM go on to get MS ... the second neurologist seems to think im in the 15% that wont go on to get it. Any advice would be so helpful.
Thank you.

[Marybeth64]

The only relatively sure test for MS is the spinal tap and it sounds like you did not have that done. it took four year for them to figure my issues out, but it did turn out to be MS. The spinal tap was the ultimate proof.

[aspen2]

The spinal tap is not considered to be proof of MS.  It can be used as supporting evidence, but a negative LP does not rule out MS.  This is even written at the NMSS website.

It is often done to look for other mimics.

[supermum_ms]

Hi and welcome to our little MS community,

MS misdiagnosis is still said to be around 10-15% and if the only diagnostic evidence your have is 1 spinal cord lesion and 1 non specific frontal lobe brain lesion from 3 years ago and no other lesions or clinical signs have ever shown up in that time frame, it is 'possible' the spinal cord lesion was Transverse myelitis (TM) and not MS.

I would think it could depend on the size of the cord lesion, TM lesions are typically large enough to cut across the cord, causing bilateral symptoms below the line but small lesions which are more consistent with MS, cause unilateral symptoms.......so a small cord lesion could definitely be clinical isolated syndrome (CIS) and or evidence of your first MS attack, DMD's have been recommended with CIS because they have been known to hold off a second attack for years etc.

BUT and there is a 'but', please keep in mind that your second neuro is a nut job, lol, no seriously, there is absolutely no way for him or anyone to 'predict' which TM patient is going to convert to MS and who won't, so on that alone i would highly recommend you seriously consider going and seeing another MS specialising neurologist!

Welcome.......JJ

[bbassel]

It does seem there are many in limbo waiting for a diagnosis, not the other way around.

I am so sorry you are dealing with this! These things shouldn't happen but unfortunately do! Hugs,

Barb

[aspen2]

How frustrating!  When you were originally diagnosed, what were the other results of your neurological exam?   There are a lot of factors that go into an ms diagnosis -- exam results being one of them.  

Have you had more than one relapse of neurological issues?

Certainly my neuro would not have diagnosed with a single brain lesion that was not characteristic of ms plaque; although the spinal lesion likely was more typical, you wouldn't meet McDonald criteria.

The issue is, neurologists need to KNOW without a doubt it's ms because the DMDs aren't benign themselves.  It's a liability thing.

I'm sorry you have to go through this process :(. I know several others online who have been undiagnosed while their neurologists wait for more proof.