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Looking to connect with person with slow developing symptoms of ALS

Posted by @tommel in Brain & Nervous System, Mar 17, 2013

My first symptoms were in 2004. Left foot flopped on the ground as I walked. After a lot of tests, first neurologist said "No diagnosis, but if I had to call it something, it would be ALS."
Went to Washington U. Center for Advanced Medicine after a while. They said probably ALS.
Went to Mayo in 2009. "Probable ALS"
Muscle atrophy continues. Muscle in my left leg is gone. Not much in my left arm. My right limbs have deteriorated considerably. I barely walk. I have no breathing or eating problem.
We continue to go to the ALS Clinic at Wash U.
My wife is very patient and takes good care of me.
We are not good at planning for what's coming - when I can't move myself around the house, shower myself, etc. Having trouble finding someone to advise on changes needed in our house.
Want to hear from someone who's been through this already or going through it now.


Posted by @alexsimon, Mar 27, 2013

Dear Tommel -
I'm sorry to hear about your symptoms. I personally do not have ALS - however i did some research and found the ALS Association has some support groups that might be of benefit, however, i do not know if they are near you:

Otherwise, Mayo Clinic has some information about ALS available here:

If you are intersted in reseeing a Mayo Clinic physician, please click on the request an appointment button on the upper right hand corner of your screen.

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