Living With A.L.S.

Just recently I was diagnosed as having A.L.S. and am awaiting confirmation from a specialty center. For a little over a year now I have experienced a loss of motor control of my left leg, primarily below the knee. I cannot wiggle my toes, stretch my calf reflexively, or walk without my toe dragging on the ground as I try to bring the foot forward. So in compensating for this affliction I walk with a very noticeable limp. As this condition presented rapidly, within a span of four months, I found myself deprived of most cardio exercise available. I can no longer do jumping jacks, run, walk at a high pace, or any other thing that requires leg stability.

During the early stages, I would notice muscles in my left quad twitching sporadically and at times it felt as if an individual muscle fiber just died. For a little over a year I was told that I was a "medical mystery", and because there was no diagnosis nothing medically could be done for me. Now after spending a half hour or so, face to face with a neurologist, I do now have that diagnosis. Unfortunately A.L.S. is the diagnosis which has no cure or treatment. I guess I am blessed that only my leg is affected directly at this time, it could be worse and will get that way eventually. I am now waiting to go to the A.L.S. center at UCSF to have the diagnosis confirmed or refuted, when that will happen I do not know.

Much of this ailment is a mystery to me still, my mind is filled with questions as to how, what, and why A.L.S. attacks the body. How did I get this? What is actually causing the nerves to die? Why is there no treatment? I understand the no cure, but why has there been no treatment discovered to alleviate the symptoms of muscle twitching and cramping?

I look forward to hearing back from any and all who wish to offer information and advice on this issue.

Also I just received word that the request for a second opinion from UCSF was denied by the prison. My physician said that if the second request is denied, then I would have to pursue legal action. This is another problem with this state, legal action will probably cost them more than the second opinion.