p.s. on ten year anniversary–no medication

May 15, 2008 at 9:22 am

In answer to the question about medication: no meds! I was on IVIG for a year and on steroids for about 18 months, so tha twas significant time after starting to get better. My original neurologist said that my recovery was due to the drugs and I needed to get monthly IVIG treatments, probably for the rest of my life. That was intimidating because, sooner or later, I would reach the lifetime cap on expense for my insurance company and I couldn’t afford to do IVIG on my own. I then went to the University of Pennsylvania for a second opinion (and to a Columbia Pres in NY for a third). The doc at Penn, whose name I now cannot remember, told me that he would be in favor of trying to cut the IVIG to see what happened because of the expense and the risks in getting the transfusions. So, very tentatively, I stopped the IVIG. That was nine years ago. I have not had an IVIG treatment since or any steroids since about 8.5 years ago. I was pretty scared after delivering my daughter that I would relapse, but I didn’t. Every once in a while when I am really really tired or run down, I feel like I might be having symptoms again, but so far so good. I also have to say that I am a lot weaker than I was before getting sick. That’s partly the natural progression of age, but my arm and leg strength–especially arm strength–has never returned. And, there is the big numb spot on my back where I probably had so much nerve damage that I’ll never recover from it. It’s not all good news, but it’s mostly good. Take care! CIDP is just about the worst thing that ever happened to me. I can’t be Pollyana-ish about it. And, I have to say that I was very very very depressed when I was in the depths of it and grasping for even one story of someone who got better. I hope this provides this for some people out there who may be feeling that there is no light at the end of the tunnel. I am an example of there sometimes being light at the end of the tunnel. But, I understand that the tunnel SUCKS. Pardon my bad language.