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Hi there

I am told that I am very atypical a case with MND. I have loads of fasciculations and craps all over my body. I have muscle wastage but my muscles are all still functioning and responsive at this stage.

I am curious, atypical in what sense, i.e. does it mean faster or slower progression or just unusual symptoms?

I just got back from a Disney cruise myself tonight. It was difficult to not think about this diagnosis, but I had fun. We even spent 2 days at disneyworld, I was able to walk both days no problem (even tho neurologist states I have clonus in my ankles).

Yeah I am wondering about my symptoms at this point, right shoulder and bicep area pretty much wasted at this point (been a year since I noticed that atrophy, 2 years since I noticed weakness), but tricep and foreman still have muscles. My right arm and hand can function pretty normally, just can lift large/heavy objects above my shoulder.

I have my first ALS clinic appt. on Friday (snowstorm in the forecast, hope it doesn't come), hope to have many questions i have answered, otherwise just trying to live life as normal as possible at this point.
 
Well I had my visit with the ALS Clinic today at GWU. Had another EMG performed by the neurologist who specializes in ALS, as well as a physical exam. She confirmed diagnosis. At least she said I have slow progression

Had my FVC test, 99% woo hoo!

They had a drug trial but they required people with hand strength below 40 to qualify. My right hand measured 54lbs, left hand 86lbs. Won't see them for another 3 months...
 
At least she said I have slow progression

That's the thing we all hope for so glad it is the case for you !
 
So sorry that ALS was confirmed. Good news about the FVC and the hand strength. I wouldn't fret over not getting into that particular trial...the drug they're testing is supposed to only increase muscle strength, not change the course of the disease. Keep watch at the NEALS site for info on other trials.
 
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