Cidee

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  • August 18, 2014 at 3:45 am

    I have deep nerve and muscle pain and skin level burning and itching.

    August 17, 2014 at 8:34 pm

    So sad to see your post gslm because I relate every word.

    I was perfectly healthy, and happy. Until my gp pushed me to have 3 unnecessary vaccines on the same day. Now I have lost my life. Such a crime they did to us.

    August 12, 2014 at 1:21 am

    Alisa, have your doctors considered Lyme? Or even MS? I would think so but just want to make sure.

    August 12, 2014 at 1:19 am

    bny806, you and I share many similarities. Last year my GP pushed me to have 3 vacinnations on the day (all were unnecessary) and triggered an autoimmune reaction in my neurological system. Weakness in legs, numbness everywhere, pain, shaky hands, lack of balance, weak jaw and face. I do not have much demyelination but have much axonal damage. I also have mild SFN but all symptoms are autonomic. I was checked for autoimmune Lambert Eaton because it, like CIDP, is often caused by vaccination or infection. A fact even less talked about than the more infamous CIDP – vacinnations link. I was of course thoroughly checked for cancer too and I am clean. My doctors are all very positive it was an autoimmune reaction to the vacinnations.

    Have you tried DAP along with mestinon. It might help too. I am only on ivig. Every week. I respond well but I am far from normal. It is hard to live like a 24 year old being hooked up 2 days a week. If I stop I go down more. And because all my damages are axonal I can afford to stop the weekly infusion.

    August 11, 2014 at 4:38 pm

    I am desperate to do stem cells transplant because all my damages are axonal and permanent. I can’t afford to deteriorate any further. But I was told they only take classic CIDP patients.

    August 11, 2014 at 4:28 pm

    I also read axonal damage has to do with mitochondria. Anyone can shed some light on it?

    August 11, 2014 at 4:01 pm

    Connie, I just saw your message. Want to share my damages are almost exclusively axonal. I am not even sure mine can be called CIDP. I have no demyelination. CIAP maybe. I respond well to ivig. However as you know axonal damage don’t recover as well. Therefore all my damages are likely permanent. The most important aspect is to establish it is autoimmune and you respond to treatment for such. In my case all my symptoms started after my gp gave me 3 vaccinations together on the same day. So it was easily established as an chronic autoimmune reaction to the vaccines.