Recent content by sf58

I was diagnosed with ALS at MAYO in March 2013. I tried to get enrolled in this. Mayo had over 400 applicants for 25 trial patients. I had seen a post somewhere maybe back in September? from a woman in Minnesota that was entered into this trial. It may have been on the Clinical trial website. I...

Did the doctors say you can continue to get the drug if it helped u? It was suggested to me that this might be possible. Did u ever find if you got the drug? I think I may be on placebo since I have what appears as a slow decline in grip strength and balance. Carrying a shopping basket is enough...

You are in my prayers. god Bless u!

My copper levels also were deemed normal by MAYO, but I don't know about FREE copper? Any thoughts? My son did PhD on Alzheimers and there is a definite relationship between copper and plaque in the brain. Any recommendations to remove copper if it exists? Will a zinc supplement help decline...

Thanks to all replies! I just returned from my 5-week visit. They tested everything, since I now have a 1-month supply of full dose and don't return for a month. They did not test hand strength each visit. But, over the 5 weeks of the trial to date, right hand went from 60 to 57. Left hand 25 to...

Sorry, I cant help insurance issue in Canada, but my ALS started left hand, right foot. I am happy to compare notes although it progresses differently for all. Best wishes! In the US, the MAYO Clinic, Minnesota gave the definite diagnosis for me in March. My insurance was notified in March 2013...

Looking for others involved in cytokinetics clinical trial for tirasemtiv to compare notes. I am a 58 yr. male living in Durango, CO. and traveling to Phoenix. (fly/drive alternating weeks) Getting tough. I've had ALS for about 15 months. The decline seemed to stall for a few weeks when I...

I am taking the Cytokinetics-tirasemtiv for a month. Next week will begin monthly visits. I cant notice any benefits. I would like to know how others are doing.

Hello, God bless you! My heart goes out to you. I too have that falling problem. Face plants are no fun. I am involved in the Tirasemtiv clinical trial. Too early to tell if it helps?

What is IVIG ? Please and thanks

I Agree, advice and suggestions would be nice