Hi
I don't know if anyone else has seen this but apparently FND is now listed as a rare disease (or disorder) sorry I cant remember the words... I am thinking this could help with explaining it or giving the condition some credence/weight as at the moment it's hard for people to "get it" - especially the benefits people!
Breathes a sigh of relief, hopefully this will help me be able to get benefits soon and provide a reason to the benefits people why I can't work
Wow that's great to hear!! I am on board with benefits thing, I recently lost my benefits because they could not understand it but my neurologist is trying to explain and show them it is! It's hard enough living day to with varied symptoms, to be told or feel like it's nothing they consider as serious as anything else is beyond crazy! Best of luck for everyone! Spread awareness!!
HiI have just googled it and here is the link
Just seeing it recognised is a relief!!
rarediseases.org/rare-disea...
Hi Lou,Thank you for your link.
Very interesting points in it.
It mentions individuals who could have a complete reverse of this horrible condition, of which my wife has had since 2011.
However, I've yet to hear of one person fully recovering.
Very good recoveries, yes, but not a full one, and until that happens, we just have to keep living in hope.
Stay safe and well!
Warmest wishes always.
Tony and Kim 👍👍 🙏🙏
I think that's been over-ruled by the latest stats in the UK which says something like 1 in 4 people presenting in neurology have FN(Conversion)Disorder. And, believe me, having a rare condition makes absolutely no difference to a benefits claim in the UK.
That is an interesting statistic considering I have never met another person with this disorder. My PT and OT specialize in neurology and they had never heard of it prior to my diagnosis. I have been in inpatient neurorehab facility because of full body paralysis and none of the nurses or therapist had ever heard of it either. I am the only FND patient my neurologist has and she has a full practice. Maybe in the US it isn't diagnosed as much as it is in the UK. Thankfully, I have not had any trouble getting my insurance to pay my benefits and I have been in disability since prior to my diagnosis when my neurologist thought I had MS. I guess it helps me that I have to use a wheelchair the majority of the time. It is difficult to do a nursing job with bouts of full body paralysis every few months.
I think the benefits people are getting now more, had a lady come to asses me and she was very good, she was very aware of FND and assessed me as such, but i think this is due to the area in which you live.
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