Reply To: MFS & Blood Pressure

I started going numb in October 2008 and became paralyzed in 10 days, then I was helped to the ER. The ER diagnosed GBS and I became much worse in their ICU while being treated with IVIg. After I had not started to recover, my GP had me transferred to another hospital that had more experience in dealing with GBS. I was given PE in November and I started feeling better 2 days after (very small improvement, but improvement none the less). The neurologists there diagnosed me with CIDP and MFS in December. It took them about 9 months to put the diseases in remission. It took nearly 5 years for my body to rebuild what damage it could. My upper body came back pretty good, but my legs and feet don’t work.

I’m out every day I can go shopping or visiting museums, movies, fairs, etc. My power wheelchair fits on buses and subway trains and I can go wherever they can take me. I just got back from Hawaii last week (my 2nd trip to Hawaii in a wheelchair) and this type of travel has its challenges, but I had a great time (Hawaii is mostly ADA compliant).

I still have some residual MFS symptoms in my face, but I can close my eye now, smile and talk almost normally again.

Do you have a center of excellence nearby? It might be worth your time to get a 2nd opinion at one. Testing for CIDP usually includes a check of deep tendon reflexes, analysis of nerve conduction velocities, and a cerebrospinal fluid test. Have you had any of these? Is your weakness fairly uniform in both arms and legs? An experienced neurologist will test you to determine if you have CIDP or one of its many variants (MMN, DADS, MADSAM, MFS, LSS, CMT, etc.).

The current list of centers of excellence can be found here: http://www.gbs-cidp.org/get-support/centers-of-excellence