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I'm back after seeing the best neuromuscular specialist in OK at the M D A/A l s clinic. He did thorough blood tests, mri's w/wo contrast on brain, neck, thoracic area, EMG, etc. He admitted even he is stumped. He can't find anything wrong! But yet I can't walk and am partially paralyzed. He...

The doc (Dr. Kershner in OKC) says I have no leg reflexes, partial paralysis r. side of body and a very complex neurological disorder...though prob not A l S! He was very interested in my eyes. I had a hard time following his hand motions. He took 15 vials of blood and is testing for everything...

Hopefully this is the right place to vent. I think about my a l s specialist appt. Thurs and I'm getting really afraid. Afraid even a specialist won't know what's wrong with me. I've had a lot of tears-even just watching silly commercials. Not sure if it's just stress and/or all these body...

I did some research and there is a slowly progressive form of this awful disease. Ya'll prob know that but it was new to me. It was found on chromosome 9. I will bring it up when I go see Dr. Beson at the mda/Al's clinic. Is this dr an AL s specialist? Anyone know? I'll try to find the link to...

Did the usual exam and wouldn't tell me anything but that my results were "impressive" ? He doesn't know what I have and has never seen anyone present like me. So, he referred me to Dr. Beson at the MDA/ALS Clinic in OK. City. Arrgh. The mystery continues. :roll: Kate

I feel kind of at home with this group. ALS didn't seem to fit cuz I've been on a slowly progressive decline for 13-15 years now. I was in my early 20's when I started limping on my r. side. I'm 39 and have been scooter bound for 7 years. I wish I had done more when I could. But the progression...

I was going to go to a specialist but have changed my mind. I may never know what's wrong and maybe that's ok. I have my scooter and I can function from there. But, I mostly just sit. Nighttime is rough with the leg spasms and insomnia. But since there's no atrophy I'm sure there's no a l s...

Anyone else have awful leg spasms with leg weakness? Just one of my symptoms. Wondering if I'm in the right forum... Thanks, Kate

Yay me! I finally called to see the ALS specialist! Yesterday, I figured out I sprained my hand during one of my many falls last week. Idk which one or how I did it. :razz: So, last night my husband said I'm to stay in bed for 2 days to prevent further injury. I just thought it was kinda funny...

Tried to post before and it went to moderation for some reason. I sound further along in symptoms than some of you and I haven't even been officially diagnosed yet. 2 uncles on my mother's side, her 2 brothers died of ALS. I started having symptoms in my early 20's though I didn't realize it...