Finally Treatment

    • June 23, 2024 at 7:46 pm

      In April I finally received IVIG. After 2 weeks or so I felt my body waking up. After 3 weeks my body felt more alive than it has in 5 years. Now after 2 months I feel symptoms initiating again. I called my neurologist’s, her nurse told me that it was only a one time treatment and it sounded as if the Doctor got in trouble as the insurance would not pay. I now have been abandoned after feeling SO MUCH better but I definitely feel myself going downhill.  I have been going thru this for years and finally persuaded them for the IVIG and have had so much positive results . I am left  without ANY path to follow .  Any suggestions would be greatly appreciated  Thanks  Tim

    • June 23, 2024 at 11:47 pm

      Hey Tim,

      I am happy to share my personal similar experience, and maybe you’ll find something in here that helps you. After my initial attack of CIDP, I was treated with a loading dose of IVIG, and I started to improve fairly soon. About 18 months later, I had another attack, and because my insurance didn’t want to cover a scheduled hospital visit, I had no choice but to go to the ER. My insurance did cover that. After my third attack a few months later, I changed neurologists, and I found one on the Foundation’s Centers of Excellence list. Boy, did that make a difference! I still had to go to the ER, as once again, my insurance wanted me to wait for approval…no thanks! But now I had a neurologists who decided that a new treatment was called for. He started me on oral prednisone, combined with the loading dose of IVIG. Between the two, my CIDP went away, and even though I’ve tapered down my prednisone dose to almost nothing, the CIDP has stayed away. That was 6 years ago. I hope that my story helps!