Reply To: CIDP/MMN/Miller Fisher: is it over?

June 28, 2017 at 2:05 pm

I have had more standard GBS (I think, always hoping it doesn’t end up being CIPD) so I don’t have a personal experience like yours. But I would like to encourage you to see a neurologist who specializes in autoimmune disorders. I have had a son with cancer (only about 50 cases a year are diagnosed with his particular type), a mother who has a rare autoimmune disease, and now my own (rare) GBS, and I can tell you I have learned it is beyond important to see the right doctor. Not just with the right specialty (neurology) but the right sub-specialty. Especially if you end up having CIPD (GBS is acute and doesn’t match your history very well), you need the right doctor to correctly manage it. I would look at the centers of excellence listed on this website and see if you can get into one of those, or research the neurologists in your city in terms of their sub specialties. It can make all the difference. I found that I could actually get into the center of excellence closest to me sooner than I can get into a neurologist who specializes in autoimmune here at home. Good luck to you. Be persistent and research!