I talked to the neurologist again yesterday
Hi, thank you everyone for your comments and suggestions. It helps so much to have people support and understand. It also helps to have people commiserate about how this condition alters ones apparent age. A year and half ago, I felt and acted(!) like someone in her late twenties –half my age. Now I tell people I feel (and act) like someone who is 92 (roughly twice my age or at least what I admit to…). Gabrielle, I am so glad that you are doing better, but I can feel how tough the news about work was this week. I hope a lot that you get stronger and better so that you are able to do what your heart’s desires ask of you.
I wanted to say that I like and trust my neurologist. I think that he is thoughtful and patient to try to answer all my many questions. I went for repeat NCV testing yesterday and talked with him more. He said that the NCV was pretty stablly mildly diffusely abnormal. He has said that you can see mild abnormalities with CIDP, but that the stability is not usual. (Yes, I know some of you will say I have gotten 4 cycles of IV IgG in the 13 months and this may have altered the course). Anyway it is a little clearer–apparently he is still worried that there is a problem in my spine or brain (such as MS or another autoimmune process). He is having difficulty deciding if this is a central or peripheral nervous problem because it is not typical of either, but has features of both. treatment depends somewhat on what it is and referral to a big place is helped by knowing what it is as big places divide out neurologist into groups based on similar disease processes. Anyway, he is going to think about the NCV tests and all the rest and take action on a plan to better define and treat this. Thanks to all of you for your support to push to make sure that this happens and that there is not a watch and wait approach continuing because that was not working.
With Hope for cure of these diseases.