Reply To: nerve healing process
Larry–thanks for sharing your brothers experience. Yes I am able to function alone. The cidp has affected the nerves in my calves and feet, causing walking and balance difficulty. I dont use anything to walk—but do not walk very fast anymore.
I am awaiting a date for an emg/ncv to be done sometime this month. If the emg shows any improvement then I will stay with the rituxin and try another treatment. If not, I will apply for a sct. I have already spoke with Paula at northwestern, she has e-mailed me the paperwork
looks like your brother has been through a lot of treatment for his cidp–especially since only being diagnosed 6 months ago. I dont think my dr has been as aggressive as some. If i dont get into northwestern I plan to look for a dr who will treat more aggressively. My dr is so concerned over what might happen in 10-15 years on every treatment—she seems to forget that i am worried about right now, i dont care if i get cancer in 10 years from immunosuppressants if it gives me 10 more years of walking.
Patience is definitely needed with this disease—and I will be the first to admit, I dont have it. My feet just wont do all the things my head and heart want them to and are not keeping up no matter how hard i push them 🙁
I do have axonal damage which, you’re right, takes longer to heal. Lori