Spacticity and quinine
This forum is for questions and support regarding neurology issues such as:
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Don't want to give you too much to read, but I am curious about your situation as I seem to recal you saying you have had clear MRIs and obviously had to go to alot of trouble to get diagnosed. How long did it take? Do you have isolated attacks? or does it progress slowly? I hope you don't mind the questions - I'm really struggling after the neuro last week and so tired of no diagnosis - I've managed to stay possitive up til now, but I'm finding it hard to keep it up. Hope you're feeling better.
I'm waiting for an appointment with an Orthoptist - (specialises in eye misalignment etc) I asked to see an Ophthalmologist, but for some reason the neuro thought Orthoptist would be better. Went to the Optomotrist the other day to see why eyes hurt so much - thought maybe didn't need prism anymore and this was causing strain. He said no - eyes are worse - need stronger prism - 4 diopters which is pretty strong. Can't read or even watch Tv sometimes, or I'll trigger them to spasm and get a hell migraine the next day. Even the Optomotrist exam caused severe pain for days after.
I would love to get an EVP, but the system does'nt allow Neuro to go ahead and do it - he has to have me in hospital during acute attack before he can do extra tests. I have to admit to being kind of glad when the tingling started last night - I know it sounds crazy, but I couldn't help thinking 'heres my chance'. I seriously wouldn't mind going through another attack provided it got me a sure diagnosis and if I had the wonderful symptom of no pain like I did last time - I honestly felt no pain for 3 months - just other sensations - then when it went, I got burning pain in my spine which spread to my arms. I have had no pain today and yesterday.
Neuro has me on Neurontin, which has taken away the head pressure and virtigo, but hasn't really done anything else that I've noticed, Still - great to have a clear head - had forgotten what that was like. He also has me on Imigran - which helps with the migraines and also with the arm pain, but can't take it too often unfortunately - really need something else, but again, Neuro wants to wait.
This is getting very long. Better get off and give arms a rest - I always find I overdo things when I don't have the pain to tell me to stop, and then I pay for it - I'm sure you find the same.
Please write back and tell me whats happened for you - have you had any further tests yourself? Thanks for the web adress - I looked up & realised I'd already read. I know the episode I had where eyes went crosseyed is usually a result of BINO - posted on the eyecare site - gave all the details and eye doctor said he did'nt know what else it could be.
Must go - talk later.