I have not been able to shake the gnawing feeling that I have been misdiagnosed. Other ALS patients, support groups and friends have also had the same thoughts. Over the last four years a small glimmer of hope has been growing as each year passes that just maybe the doctors had got it wrong, again. After all it took four neurologists and four years to go from MS to ALS.
The last neurologist I trusted dedicated his life to finding a cure for ALS but sadly he now has ALS and the rumor is he is under hospice care. I have not seen a neurologist in five years until this week, but have kept up on all the latest research. There is usually no reason to see a specialist until you need a procedure but an updated opinion couldn't hurt.
I sat waiting in a tiny exam room for the "new guy" to appear. I was there under duress by my new primary care doctor. Who was a tad uncomfortable taking me on alone. Dave waited in the chair across from me as I tried to get comfy on that cheap tissue cover. There were models of brains on every surface that held our interest until the doctor arrived.
He was about my age with a very bad toupee sitting crooked on his head. He shook each of our hands with a big warm smile. I was thinking OK here it comes, the big drawn out physical exam of standing, pushing and walking. Instead he surprised me by setting aside my file and asking me what I thought I had. That caught me off guard but surprisingly I gave him a quick answer. An illness that acted like ALS but stopped at the lungs (not fatal). Now he was caught off guard as he said "I agree" surprised at my knowledge.
He took out the dreaded rubber reflex hammer and tapped my knees. I have clonus which causes hyper reflexes in my legs. Both legs shot out like rockets as he says "well there goes that theory" disappointed. It can't be what we thought, this is classic ALS. As I heard those words my secret flame of hope was gone. He continued by asking me "how I wanted this to go?" I knew what he meant as I looked him squarely in the face saying "I want to keep fighting until the cure."
He continued to over enunciate his words due to speaking in broken English to make sure we were on the same page. Going over the procedures that would need to be done all the way to a breathing machine, at some point. Yada, yada, yada but then he said do you know about Lithium? "Isn't that for bi-polar patients?" I asked. He said there are findings that it can create new cells in the brain that might help ALS, Alzheimer's, Parkinson's etc. I had a spontaneous burst of enthusiasm and optimism. "What about side effects?" I asked and he said "it was a low dose that may make me a bit sleepy." I said " I'll take the prescription and read about it, then decide." It's not a cure but it supposedly buys time. The doctor rubbed my back and said "who knows we might be writing a paper on the miracle ALS survivor someday."
I've read some good and some bad reviews from other ALS patients. The jury is still out but there is always that glimmer of hope.