Re: Anyone with confirmed CMT been helped by IVIg?

[Guest guest]

I have confirmed CMT and CIDP. I have had 1, 5 day IVIG regimen and 1, 3 day

regimen 1 month afterwards, and will have another 3 day regimen next week. It

has helped significantly for about 2-3 weeks afterwards, increasing my strength

and reducing pain. The last week or two before the next therapy has been

difficult with a lot of pain. Hopefully the IVIG will last longer next time.

[Guest guest]

Gretchen:

I was originally diagnosed with CIDP and received 4 rounds of IVIG

treatment (5 days each) with no improvement. Did 3 months on high

dose prednisone first -- no improvement, just moon face and mania.

Current diagnosis is CMT -- unknown variant on MPZ gene (maybe 1b?) --

definitely demyelinating.

Tami