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Thank you for your advice. I will be seeing the neurologist again in about 8 weeks. I asked her many of those questions already. her report says "emg shows chronic denervations diffusely in the upper and lower extremities and thoracic Para spinal muscle which is showing diffuse fasciculation...

Well I had both my appointments. In December I had a follow up with my local neurologist who repeated another emg (very extensive 1.5 hours). The results where very slightly worse. She tells me she thinks an axonal neuropathy/ slowly progressive mnd, and says the als specialists diagnosis makes...

Thank you, I was turned down for cpp as I don't have a firm diagnosis. I have appealed and should have an answer to that in the next 10 weeks. I actually got approved for odsp today, so at least something has gone right. I will ask about ivig next time I go to the clinic. They don't seem to want...

I live in Canada, I'm not really sure who I'd call. I did speak to someone that deals with concerns for the hospital. They where not very helpful. I go back in a month or so and hopefully they will have some news for me.

I have no filings or exposure to mercury so I doubt that's the problem, and Ive had several bad emg's over the past 18 months or so. They say its a mnd or axonal neuropathy.

Thank you. I guess only time will tell what is happening. It's comforting to know there are other people going through similar things, although I truly wish none of us where going through any of this. I believe that its not als in my case, but something else. My local neurologist keeps saying...

I have tried baclofen, it helped but the side effects for me where to uncomfortable to continue using it. My dr has been trying to push me to try quinine lately...

Thanks for the advice, I will speak to the hospital tomorrow about any programs or assistance they can offer. Have any of you taken quinine for cramps? did you find it helped?

my current gp and local neurologist have been very supportive in doing all they can for me. Unfortunately they can only do so much, the rest is up to the hospital. There is a department there that deals with patient concerns and I will call on Monday. Whenever I have spoken with them in the past...

I go back to the clinic in January for another emg. They really don't seem to have any interest in whats wrong with me though.