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CIDP, While I am waiting for the tests, genetic?

Neuropathy | Last Active: Sep 17, 2023 | Replies (44)

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@overeazy

Took 12+ years to diagnose my CIDP. After three back surgeries and a neck fusion. No relief. Saw all kinds of docs with no real results. Five months ago I got the diagnosis and began IVIG treatments every three weeks. I now have 4 done. Takes 2 days and they come to my home for five or six hours. The results began immediately. I was able to take more control over my walking and this lasted for a few days. After the second treatment the results were much more dramatic and I actually walked off and left my cane a couple of times! Then I developed a horrible whole body rash, sensitivity to the sun, edema in both legs and I got tired. Couldn't sleep because of the itching. Discussed this with the docs and pharmacist, they added saline solution before and after infusion plus steroids each day prior to infusion. The steroids started reversing my condition immediately although I still have very dry skin and am not sure I'm completely out of the woods. It has been a week since the last infusions and steroids. We shall see. That said, I believe Immunoglobulin is a wonder medication! You know that feeling when you have had a bad tooth for a long while and then it is removed and you suddenly put 2 and 2 together and realize how good you feel. Well, I found myself doing things I hadn't done for a couple of years and it happened before I realized it. Right now I don't even know where my cane is. Oh yes, I still am bent over and moving slowly, but that is a 1000% improvement from where I was just a short time ago when I couldn't hold much in my hands, and could not walk in a straight line or without a cane and could barely get out of a chair. Today, that is my report...have to go work in the garden now!

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Replies to "Took 12+ years to diagnose my CIDP. After three back surgeries and a neck fusion. No..."

@overeazy wow! You have been through so much. I’m glad that you’re feeling better now. Your story gives me hope.

Unfortunately, I watched my dad struggle with this, but it helped me recognize the disease in myself. I’m still working with my neurologist to get a “team” around me for P/T, Pain Management…

Thanks for sharing your experience.

I’m glad you had success with your IVIG infusions, as they did not help me at all.
I might be starting a new infusion soon, and will let you know how it works.