Reply To: My Journey

I’m very sorry to read about your tough time. It seems your symptoms do resemble GBS or CIDP but it could also be other illnesses as well. There are SO many of them that present the same way. Your dr could diagnose you with “atypical CIDP” so your insurance company will continue to cover your treatments. If your diagnosis later changes it will be ok because MANY people are misdiagnosed.

When the MRI’s were done, did they do them with & without contrast? MRI’s done with contrast will show inflammation.

If you are near a Mayo clinic, I think it would be wise to call them to get an appointment. I (pretty much always) recommend Dr. Dyck at Mayo in Minnesota. My daughter has not seen him but I have researched him & I agree with his treatment protocol. There are people who post here who have seen him.

There are also Centers of Excellence that the GBS/CIDP Foundation consider to be highly qualified hospitals to treat the 2 illnesses. You can find those on the home page for the foundation.

Kelly