New to the Forum

July 17, 2010 at 2:18 pm

Hi Everyone….I am new to this forum, and have been diagnosed with CIDP in April 2010. I have had two IVIG treatments, the first one helped a little, the violent tremors in my hands subsided, temporarily. My second treatment produced no improvement at all. I developed foot drop at the onset, and now have to wear a brace. My neurologist feels that physical therapy is my only alternate treatment until my nerves and muscles start responding, and perhaps then the IVIG will have a better outcome. I have recently relapsed, and now I feel that I have no options but to live like this. I have a great pain Mgmt. dr. who is helping me with the pain, which is so severe, I feel like it would be a blessing if I just wouldn’t wake up. At times I am so frightened, I cannot believe that this has happened to me….how did it happen? Again, like the rest of you, no answers. I am so relieved to have found all of you, trying to explain symptoms to someone that doessnt have the disease is difficult. I hope my neurologist will suggest another treatment plan, so many of you did not respond to the IVIG, and you were able to find alternate treatments. I need advise, and information, if you can help. So nice to have met all of you, and hopefully I can stop spending 18 hours in bed, and start enjoying my life a little. I’m not asking for a lot, just a little better quality of life than I have. I would LOVE to take my dogs on a walk again! That is my long term goal, and I try to exercise, but am so weak it is difficult. Do any of you have such extreme muscle loss? Have you been able to rebuild your muscles?
Thanks for listening!