Reply To: CIDP maybe?

September 18, 2018 at 3:00 pm

I did not have a textbook experience with this disease. My GBS/CIDP started as a knot in my stomach, grew to the abdomen, moved to my back and rear, then down my legs and up my chest, down the arms, until I was a quadriplegic. Then the MFS cut into my face. Later the condition began to affect autonomous muscles in my lungs and heart.

Several so-called experienced folks have told me I had something other than what I have because my disease progress was not “normal”. Hogwash, I now know starting in my midsection was normal for me.

My condition today would be much improved had I started with 3 days of Plasma Exchange before moving to IVIg (IVIg never did anything for me). This way the attacking T-cells (that don’t properly recognize ‘self’) can be purged before IVIg stops the Autoimmune system from producing more mutated antibodies.

I can’t say what might be best for you, but if they offer you a choice between PE and IVIg I would start with PE.