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Old 10-05-2012, 05:12 PM   #3
hetupsuzi hetupsuzi is offline
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Join Date: Oct 2012
Location: Halifax,West Yorkshire,uk
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Re: Years with no diagnosis, several tests, sever pain HELP!!!(long post)

hi-your husbands presentation reminds me of mine some time ago.about 16 years ago i had a very similar presentation.i went for 3 years without a diagnosis -told it was all in my mind etc-until eventually i saw a sympathetic neurologist.he send a vial of blood for testing (for antibodies for voltage gated potassium).this blood test came back positive and at long last i was diagnosed with issacs disease which is a rare form of neuromyotonia.my muscles used to twitch a lot when i got tired and were very stiff and painfu and the fatigue was unbearable.l.i live in the uk and was fortunate that at the time a world leading specialist lived in this country and i got to see him.issacs disease is rare although it is thought a lot of people may have it but do not get diagnosed as some neurologists have never heard of it.i know that some people have been treated with the lycral and it has helped them a bit.may be worth googling it to see if he can identify with some of the symptoms.there are also posts from sufferers on the NORD board of rare diseases-i wish you both luck and lots of hugs-by the way i recovered 80% in time.

 
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