I’m cheekily popping in here again to ask if anyone who now has a confirmed MS diagnosis had a clear or ‘within normal limits’ first MRI? Does it happen often?
Recently, I spoke with a couple of MS Society fundraisers that I met at a local supermarket. As I was using my wheelchair at the time, they asked if I had MS and I explained that my diagnosis is currently FND as my MRI was ‘within normal limit’ but that I am under further investigation (awaiting second neurology referral because of increased existing symptom and appearance of new ones). One lady said that her first MRI had been clear.
FND is supposed to be diagnosed with positive signs but I re-read the neuro’s letter and saw no mention of any positive diagnostic sign, just my negative results and my own ‘subjective numbness/tingling’.
I’m not sure how to approach the second Neurologist. I’ve not had EP nor and LP (not that I really want it!) and my MRI was only on a T1.5 and I know that hospital has a more powerful T3, so there are more tests that could be done. Do I brazenly ask for them?
I’ve been living with MS-like symptoms for at least two years now, with fatigue stretching back possibly eight years and an episode of diplopia and uterus failure five years ago. If the second neurologist does more tests and stands by the FND diagnosis, then I’ll have to accept that (it’s a nerve malfunction that may improve, or not. It is much less researched that MS and has fewer treatment options). If it does turn out to be MS, as I strongly suspect, then I know I’ll be supported and I’m already fairly informed about it, so I’m not scared anymore. I just need some clarity.
hi tina
why not “brazenly” ask for the tests?
you have been in limbo for as long as i can remember.
the neuro has the power to refuse anyway.
good luck
carole x
I probably will, pigpen (I’m not called Tina by the way 
I’ve been a member of this site for almost two years. FND doesn’t seem like an answer, it seems like a bookmark. It is treated as a proper disorder but I belong to a private group of FND sufferers on Facebook, over 1000 now and many of us are confused about this diagnosis. It seems to fit some but not all.
I’m fed up of waiting for appointment letters! I used to think I was a patient person. Not any more!!
Hi,
I’m not sure how common it is, but I can tell you I was diagnosed on a secon scan after my first was classed as normal.
I was hospitalized in 2011 with numbness up to my waist, along with all sorts of weird sensations. I left with a diagnosis of transverse myelitis, a definite it’s not ms and a prognosis that the numbness might improve or it might not. Thankfully it did, but my walking did not.
Fast forward almost 2 years, during which I had repeatedly been told its not ms, and a second scan which only came when we asked for a second opinion, proved it was.
I hope you get answers soon. Being in limbo, or having one label but thinking it’s something else awful.
I can’t say how common it is but an MRI scan following my first relapse was clear. Another scan after my second relapse (two years later) showed evidence of lesions, significant enough to result in a diagnosis without further tests.
Best wishes to you
David
Thanks for your replies. I’ll be asking for a second MRI, certainly.
Do I ask for a scan with contrast this time? If there’s something to be found I’d like to have the best chance of finding it.
If I was in remission when I had my scan, would that make it less likely to see anything?
This numbishness has just spread and got more noticeable. The odd lack of sensation on my tongue and cheek, the occasional tendency to bite the inside of it when eating and the persistent (yet not obvious everyday) odd stabbing tingle near my shoulderblades, around my spine…all these things are still with me. I have periods (measured in days or weeks) of feeling like I’m getting better, only to crash and feel rough again and accrue symptoms.
This happened to me, I had ON and a clear MRI and was given a 6% chance of going on to develop MS.
So I just happened to be one of the 6 in every 100 that do but presumably 94 people in every 100 don’t.
I hope you get some clarity soon.