Functional Neurological Disorder - FND Hope
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Hi my name is Cheryl I've had dystonia for 11 yrs first it was in the neck and hand, then I have started to get spasms anywhere, even when I'm asleep apperantley my husband says my body is always shaking.

I have recently been diagnosed with FND as well, I have poor stability, I get fatigued very easy, I don't like bright lights or car lights at night ,I cannot lift my legs up, my arms only lift so far before they go into spasm, sometimes I get a stabing pains in my eyes(when this happens my eyes start to water)I have short term memory loss, and my 4th& 5th vertebrae have collapsed.

It would be nice to talk to other people who are going through this as well

4 Replies

Sorry to hear. Like minded people are on the Facebook groups FNDhope and FND Just me. Go to the site FNDHOPE.ORG all the best


Thankyou could we keep in touch


Hi Cheryl, Sure sounds like Fnd, but I only have it, not a specialist in the matter. Where do you live? I have had dystonic symptoms for 15 years. The first two years were a nightmare. I have seizure type symptoms, but am always conscious. I also have times when I can move nothing for hours at a time, and cannot speak at all, eyes are locked shut, but am always conscious. Also have times when my body is spasming and contracting and moving everywhere. I too get the piercing pain both over my right eye, and in my forehead. I have Sd, spasmodic dysphonia. I have also had vestibular disease which they did surgery for. Sometimes I cannot move one whole side of my body. Often my legs don;t work. Thats about it for me. You can maybe relate to a few or all of these things, seems like fnd covers them all and more. Hope this helps, feel free to ask any questions. Will help if I can. Also there is a facebook page that is very helpful. It is a closed group, so you will have to ask to join. Goes really quickly. God Bless, Cathy


I live in Willenhall near to Wolverhampton


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