Reply To: Anyone with similar symptoms?
I haven’t lost any strength, just loss of sensations and dexterity.
When I started Prednisone, it was only a couple days before I noticed a huge difference and was finally able to sleep at night. Before I had a burning sensation that was so bad I could hardly come in contact with anything and not feel pain. Gabapentin helped some, but it made me feel awful so I quit it after going on the steroids. So far the twitches and tremors have been getting better until recently. I don’t seem to be getting any worse, just no longer getting better.
I too have mentioned things to my neurologist. She seems to be a huge fan of IVIG, and shoots down the other options I’ve been reading about likes stem cell or Cellcept.
You are right to be impatient. This is something that needs to be addressed quickly before it causes more damage.
This has destroyed me. I lost my job/income. Most of the things I once enjoyed, I can no longer do. About the only thing I have left is shooting pool which I do not so much because I want to, but to get out of the house but it’s turned out to be some of the best therapy for me too. Being on my feet for a few hours helps the condition, and helps keep my glucose down. Even so it’s something I can only really do maybe once a week.