Forum

FND patients wanted

I am aware that several members here like myself have been given a diagnosis of Functional Neurological Disorder.

There isn’t much research happening for this condition, which is very like MS (and in a few cases, has turned out to be MS after all) so when I found out that there was a project that I could help with, I jumped at the chance.

They are still looking for another 15 participants and hope to complete the study in May. Basically, you do choice tests on a PC and then go into an fMRI scanner and do the same. They pay you (modestly) for your trouble.

Please find more information here:

http://www.fndhope.org/be-the-change/

Thankyou

How interesting! Had quite a long discussion about FND with my neuro at my last appointment - even though I don’t have it!

His next patient had not turned up, so we had time for a bit of unrelated chit-chat. Somebody learning English had asked me the difference between an illness and a disease. That one had me foxed, so I said: “I’m seeing my doctor in the morning; if there’s time, I’ll ask him!”

And there was, so I did. And that’s how we got onto FND. In his opinion, a disease is when there’s objective evidence of a disease process, or organ damage. But somebody can be ill, yet not show any objective signs of disease. Depression would be one example, but that doesn’t mean only psychological illnesses qualify. FND is another one where there’s nothing you can point to to say: that’s what’s damaged; that’s the disease!

If it’s any reassurance to you (not that you have my neuro, I don’t expect), he took it extremely seriously, and he was very interested in it as a study area, and definitely didn’t think FND patients are crazy, or making it up. I know some FND patients feel they get short shrift, and are suspected of “putting it on” - that was certainly not his attitude, so there are people out there who are very interested, and take it seriously.

I’m almost sorry I can’t contribute to the research, because all it would find out was that I have MS - duh! So not a suitable candidate.

Tina

x

How interesting! I’d never thought to differentiate the meanings of those two words but his reply makes perfect sense.

As for the research, FND is only one patient group for this particular study. I won’t say anymore as I’d rather people look at the link and decide if it is right for them based on that.

It is reassuring to hear of a neuro who takes FND seriously (if you are willing to PM me the name, I can pass it in to the FNDHope group who are asking people to recommend the professionals who are genuinely helpful about FND). The problem most of us get is being dismissed so quickly back to our GPs as there is no apparent physical damage and therefore not much they can recommend beyond CBT, pain and anxiety medications. It is frustrating to see clear dysfunction without being able to find the physical cause. fMRI’s, I believe, do show more evidence that the body is working abnormally, but not WHY. Not an easy diagnosis to live with.