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AutieB

739d

This is my second time using this app and I'm just trying to find others with CIDP and out of everything I have here on this app and in general to my personal life I feel so alone. Is there anyone here with CIDP that I've looked over? Tell me you're here with what's has helped you, a sweet hello, your favorite thing or just anything. They said this would feeling lonely and I still feel lonely 2 months later

Top reply
    • Maddietl97

      675d

      I was diagnosed with it in 2014. Im always in pain. I was in the hospital for a month doing treatment for it. It's the worst. I am so limited on what I can and can't do. The little things flare me up

    • Maddietl97

      675d

      I was diagnosed with it in 2014. Im always in pain. I was in the hospital for a month doing treatment for it. It's the worst. I am so limited on what I can and can't do. The little things flare me up

    • AutieB

      731d

      I've been so busy I haven't even had the chance to open this app to sit down and read these comments till now. Ty for sharing your stories. I've been hearing about this treatment called cellcept. Usually given to patients that had a transplant and apparently are having good success with it on cidp patients. I'm sticking to move forward with my IVIg but definitely curious about cellcept.

    • Tayleen

      736d

      I was diagnosed back in 2009. I have been settling for 10 years until I had my 3 kid and decided I needed to fight. Over the last year we were blessed with finding a new doctor who studied cidp. Rather then letting me set back and take the abuse from this disease. He put me on the right dose for my body and a dose of steroids with a daily regimen of vitamins

    • Mandranarums

      737d

      I have not been officially diagnosed yet. But my mother has CIDP and I've been having all of the same symptoms, lab work, etc. as her, so my doctor, and hers, believes I might have it. I'm just waiting to get into a neurologist. One of the bigger things I have an issue with is muscle spasms and leg pain. I use a magnesium and peppermint lotion and it really helps. I often use a mobility aid (I use a cane) to help with balance issues. I don't really have a lot more to say about it since this is very new to me as well. But I'm always here if you need to chat with someone.

    • Wendi

      738d

      I was diagnosed in 1987. Not much has changed since then except I was initially put on very high dose prednisone. That was horrible! They didn’t start using IVIG until about four years into my being diagnosed. I actually found it while going to the library all the time and looking for new protocols. I brought it to my doctors attention and he said let’s try it. Yes, it’s a very lonely disease because it is so rare. Nobody understands how much you hurt all the time. And here I am so many years later and I am still here but I am worse. I went to a symposium a few years ago open to patients and doctors and was told until there is a Michael J Fox who comes down with this there will never be funding for a cure like he did for Parkinson’s! So we will have to be patient. And eat well and take care of yourself and be your own advocate.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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