Home Login/Join My Space Help Members Forums Search Today's Active Topics New Since Last Visit

Moderators: Bruce, SusanneW
Location: Orangevale, CA
Registered: 07-16-2007
Posts: 2
posted   Reply With QuoteReport This Post  
Diagnosed in 1999. By Oct 2005, I was so weak I could barely get out of bed and into a wheel chair.

Made a change in heart arythmia medication and began to improve, and within two months I was walking again. Lately, I've begun to weaken again, although I'm still walking.

My speaking disability has varied from being barely able, to talking with no noticable defect.

None of my doctors have shown any interest in the course of my disease.

Have any others had a similar decline and recovery?
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Gene, Thanks for the update. I would be interested in what medication you are currently taking. My brother recently switched heart medication (along with a couple of other medications) and it made a tremendous difference in his strength, muscle aches, etc. I will pass this info along to our Scientific Review Board and my neurologist. Take care, Bruce
Location: Orangevale, CA
Registered: 07-16-2007
Posts: 2
posted   Hide PostReply With QuoteReport This Post  
Bruce (I just lost a long reply),

I'm taking 300mg Flecanide, 240mg Diltiazim, 40mg Lovistatin, 2mg Warfarin per day, plus a Silver Centrum and a Calcium/vit. D supplement.

My diltiazim was increased from 180mg to 240 about three months ago; I experienced a sharp decline about three weeks later, but have fully recovered the loss in the last five days! (Go figure)

  Powered by Social Strata  

Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org