How were you diagnosed with CIDP?

[Guest guest]

Hi Helen,

I am curious about how you were diagnosed with CIDP?

Patty

[Guest guest]

Hi Patty -- I just spotted your question -- still trying to find my

way around this site!!

My neurologist suspected CIDP at our first meeting, despite my

strong family history of CMT. Actually, he suspected both, and it

turns out he was right!

CIDP and CMT symptoms are very similar. Key differences:

- non-uniform distribution of symptoms, left to right

- complete nerve conduction blocks in hands and feet

- facial/neck numbness

- history of autoimmune condition (hashimotos at 20, son with type 1

diabetes)

- high cfs (spinal fluid) protein levels

I have had one series of IVIG treatments for the CIDP, and now we

wait and see what happens.

The irony is, now that CMT is confirmed, it will be more difficult

to get CIDP treatments without knowing conclusively the extent of

damage from CMT. A uncomfortable position for me...

Helen