I have Generalized Dystonia and HNPP, Paraxial Vocal Cord disorder, dysphagia advanced, [...]

Posted by Lo @lo, Oct 21, 2013

I have Generalized Dystonia and HNPP, Paraxial Vocal Cord disorder, dysphagia advanced, BEB, and a spasmed occipital nerve (get mini seizers), Hypoxia from the tight chest muscles, and Pain Dysregulation. All genetic. No one knows what to do. Nor do they work together. So in the meantime I am in limbo.

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Very few people to talk to about this or find help.

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Pain on the right top of my head, eye distortions, throat closes all the way.

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I am on the CNN iReports about my disorders, here is the link: http://ireport.cnn.com/docs/DOC-993257 I also have my background on here as well. Trying to find good help is hard.

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I know how you feel. I have HNPP and CLL and no one knows what will happen when I have to go on treatment. Very frustrating. Most doctors never heard of HNPP. I always carry a copy of it and hand it to them.

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I have generalized dystonia and dysphasia too and find it difficult to get any relief or help.

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