Lady4, The FND Society should be paying you for all the great research you're doing and should certainly invite you to attend their next meeting (and not moderate your questions, as is their current practice) As it happens I've also been looking into FMDs and found this, which might be of interest to you although the DOI won't work here so you'll need to copy and paste, sorry.
Biomarkers in functional movement disorders: a systematic review
Birgitte Liang Chen Thomsen ,1,2 Tiago Teodoro,3,4 Mark J Edwards3
Thanks for sharing. I haven't read it all yet (a lot of pages) but when looking at the pages it states these are the best biomarkers for functional movement disorder (FMD) which are readily available:
We weren't offered any (although he didn't present symptoms at time of Paeds Consultation appt.
I tried the " Hoover" test, which proved distraction can work but didn't stop all the muscle spasms (unless continuing to be distracted), then he got up and started walking as usual (which he did on several occasions). On one such occasion (when he was laid up on my bed, think that could have been when legs numb) he was distracted by me playing ball with the cat, (she is super cute).
I do spend a fair bit of time researching but if it helps everyone else too, its a positive.
If you google Sue Kira, you will find she has a lot of detail about a low glutamate diet ..and uses it for therapy, but does not mention FND ..what's new?
Thanks Shimmyaway. I was surprised levels were twice as high as in healthy controls, its got to worth a shot to reduce intake to see if it makes a difference.
Your welcome, maybe a little tweak here and there can help, esp with pre-processed foods. I failed to see MSG noted on the back of a soy sauce packet but it did mention amino acids.Maybe having a dietricians input could help a lot of sufferers.
I'm willing to give about anything a try, at this point. According to more reading, glutamate levels can be tested. Worth asking neuro about...seeing mine in about a month. Will let you know!
I’ve done gluten free…did not notice any change. I do eat fermented foods as they are supposed to be gut friendly. All so confusing! Had a lumbar puncture but don’t know how to read for glutamate levels. Again, your articles are such great bread crumbs to follow…have learned a lot!
I’ve had multiple MRIs which were inconclusive for MS which is why I had lumbar puncture. That result ruled out MS diagnosis. My neuro, though a bit of a jerk, has been thorough. Referred to movement disorder specialist who ultimately diagnosed FND/FMD.
Have gone through 2 bouts of pt…one of which made everything worse…and one with limited improvement.
Sorry to hear your having such a hard time. Its not good enough only being offered two sessions of PT. We had one PT and one Neuro Physio for legs spasms and a couple earlier on for gait issues.Maybe you could ask your neuro whether the previous MRI scans showed glutamate levels at your next appointment.
Interesting article with supporting evidence (although small trial group) but wasn't sure about this bit at the end:
He noted that several classes of drugs currently available for other indications can influence the glutamatergic system "and could therefore be useful for these patients."
Shouldn't monitoring of the levels and introducing safe ways to maintain optimum levels be a better solution to more drugs.
If you google Uma Naido, you will find that she is looking into diet as part of the solution to stress and mental illness and David Perlmutter has written a lot on the role of diet in psychiatric illness .. (Grain Brain, Brainmaker) but whether fnd is psychiatric is a moot point ,,pass.
Thanks, personally I think the majority of FND sufferers experiencing stress and mental illness is down to the lack of support and understanding of FND. I am the parent and the whole experience has affected me and I am not the one who got the diagnosis.
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