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TOPIC: Recent Diagnosis

Recent Diagnosis 2 years 7 months ago #3636

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I am a 58 year old man and have been diagnosed with Craneal Segmental Dystonia and am still trying to come to terms with it. My eyes are closed more than open and I am having to type this with just my left eye open. My voice changes and goes worse the more stressed I am. My jaw makes strange movements. My neck tenses and gives me great pain. My tongue doesn't feel right and sometimes when I cough my tongue touches my upper back teeth and I make a noise like a duck. Sometimes when eating the contents of my mouth shoots out and I keep involuntarily lowering my head to my chest. This has all happened since September 2014 when I felt my mouth twitch when I was talking.
My consultant [moderated: removed medical professional details] seemed to diagnose it as soon as he first saw me. He has prescribed 100mg Orphanadrine and 20mg of Baclofen 3 times a day. Since taking this I experience dry and tingling skin all over my body. The back of my scalp is the same but I keep scratching it and it gets worse. [moderated: removed medical professional details] asked me whether I had any symptoms before last September, which I didn't think I had then I remembered that I had an operation on my wrist about 10 years ago and I have not been able to write since.......................that is until I started the medication, now I can write again without pain. I also remembered that for the past couple of years I used to be watching the television at night then my right eye would close. I used to joke with my wife "watching the telly with one eye again, time for bed"

I have been offered the Botox around the eyes, which I will go for and Botox at the front of my neck which has a 10% chance of preventing me swallowing and being fed through a straw up my nose, I'm not going to chance that one!

Barry Whalley
Last Edit: 2 years 7 months ago by Hannah.Prime. Reason: Removed medical professional details
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