Clear MRI/FND

New diagnosis and before diagnosis
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Good Morning All

Hope you are all keeping well.
I am seeking your opinions and advice please
Back story: I originally saw my GP for hip/back pain and pins and needles back in October thinking sciatica or similar. I did have other issues, balance problems, speech difficulties, brain fog, but didnt even mention these as I put them down to getting older.
Referred to physio who within 5 minutes said this is not “mechanical” its neurological . GP sent an urgent referal to neuro and following a phone consult i was sent for a neck and head MRI on NYE.
I attended my first face to face with neuro on Tuesday. Lovely consultant, who asked me how I was getting on and my thoughts on what it could be. I explained I was no better , probably worse in fact as my balance is far worse, 3 falls in 2 months, speech is crazy bad and deep joy, urinary incontinence has appeared from nowhere . He listened to my woes, did a quick exam and sat me down again. He explained my scan was clear bar arthritis in my neck (which i knew about anyway) so no diagnosis could be made. After a drawn out explanation about hard/software of the brain he finished off with "and therefore im going to diagnose you with FND, here’s a website and i will write to your GP. "
I left and sat staring at the windscreen for half an hour trying to process it.
Pleaae dont get me wrong…I am delighted that my scan was clear. I was terrified of the results, but after getting home, doing the obvious "googling"of FND i cant help feeling that I dont fit the criteria. I dont have seizures, cramps and 100% do not have a buried trauma! So lovely people…your advice please. Where do i ho from here? Do i accept this diagnosis and keep struggling with the serious impact my symptoms are having on my work and private life? Do I go back to my GP (Id hate to be "that"patient demanding a second opinion) or do I go private??
I know you clever lot will have some answers and please accept my thanks for reading my waffling! X

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My first scan was ‘clear’ I was fortunate enough to be able to go privately for another opinion and was then diagnosed. Don’t mean to scare you at all because it is very usual but if you have the means to get a second opinion then it might be worth doing, it will hopefully be good news again and put your mind at rest that whatever it is isn’t at least ms. Good luck x x x

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What is the neurosymptoms.org website? It’s pretty good. I don’t recall there being too much ‘buried trauma’ type nonsense on there, but then I haven’t looked at it for awhile. If somebody told me that I had MS because ‘buried trauma’, I would bite them, so I completely understand your exasperation at such insulting nonsense.

Stepping back from all that, when you think the doctors haven’t quite got it right, there’s something to be said for just stepping back from it all for awhile and mulling over your options. Maybe that just gives you breathing space. Maybe it gives an opportunity for something else to happen that changes the clinical picture and makes things a little clearer. Either way you potentially spare yourself the immediate stress of continuing to bang your head against a medical brick wall. You could probably do with a bit of a rest from that.

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FND should be a diagnosis of inclusion, not exclusion. This means there should be certain findings that demonstrate that it is the ‘software’ rather than the ‘hardware’. I think this is one of the best descriptions on how FND should be diagnosed. It is a talk by Prof Jon Stone who is one of the experts in the field, actually for MS nurses, but is suitable for the lay person with an interest. It may help you ask your GP the most useful questions, in particular for proper evidence for an FND diagnosis.

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A fabulous listen! Thanks so much. Had previously though FND was a case of “it’s all in your head” but this explains it beautifully.