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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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