Reply To: CIDP and CVID help please

April 4, 2015 at 2:05 pm

The Funny thing about CIDP is that it’s a illness with really only one treatment IVIG, that makes it very easy for the Doctors, and very profitable for IVIG manufacturer and the Infusers. With that said. If it wasn’t for an MRI finding that the cervical spinal stenosis was crushing my complete left side from neck down. After the Surgery, I’m personaly demoting my self to plain ol’ neuropathy. I have 4 more IVIG’s to go, and then I’m taking my chances with out it. I feel the stenosis was the creator of all ills. We’ll see.

With that said, I will offer my SOP on difficult illnesses. I advise everyone to visit a Major US City’s University’s Medical Center. One stop shopping and you can actually get almost all testing done in one day. If you want blood tests, visit an immunologist, they LOVE blood tests, and so do the University’s.

I can tell you for CIDP one of the top Guru’s is a Dr. Norman Latov at Weill Cornell. You might also want to look over some of the IVIG studies (Jackie Scoon @ Columbia etc.etc) they are all over the place.

I would also inform you that John Hopkins and I think Mayo (possibly even Harvard) will do 2nd opinions $$$ but compared to one infusion dirt cheap.

Good Luck!