CIDP and CVID help please

    • JesseN
      April 4, 2015 at 11:37 am

      I was diagnosed with CIDP in September of 2014. I am getting ready to start IVIG in May now that the insurance has finally approved it. I also have epilepsy. Shortly after I was diagnosed with the CIDP I started having extreme bouts of stomach pain that can last from 14 to 24 hours if I eat normally. I am down to just eating toast because I can’t take the pain. Anytime they do a test with any kind of contrast I have severe reactions to that. I have a friend who has CVID I think is the abbreviation who started out the same way. My GI is more interested in ramming scopes everywhere before he even does any kind of lab work and refuses to listen to anything I say. He won’t even acknowledge my other conditions and treatment coming up. I had at least asked him to do the blood work to see if the antibodies showed up because my neuro said the IVIG treats both. He refuses to even talk to me about doing blood work.

    • Tsik See
      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!