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Why test for neuropathy if there is no cure?

Neuropathy | Last Active: Apr 4, 2021 | Replies (87)

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@sparshall

I have CIDP -- chronic inflammatory demyelinating polyneuropathy -- an autoimmune form of PN that is supposedly treatable. It's considered a chronic form of Guillain-Barre, a "cousin disease" of MS, and nobody know what causes it. It produces all the symptoms others have mentioned here, while destroying the nerves in the legs, feet, arms, and hands. Some people get better on very high doses of steroids (which wreak havoc on the body), some take immune suppressants, and many receive IVIG, as I do. I get a weekly infusion of gamma globulin. It costs a fortune. At first I benefited from it as it relieved my pain. But by the time I was diagnosed I had so much nerve damage in my legs that I have no hope of substantial improvement. I am growing weaker and weaker, and my neurologist doesn't seem to know how to help me. I am headed toward paraplegia and permanent confinement to a wheelchair. I am tired of having to beg doctors for help. I have lost everything to this disease -- my career, my independence, my ability to even get out of the house without help. All I have to be grateful for is that I was old when I developed CIDP. Some people are afflicted when young and never have a chance for a normal life. Every form of PN is hell, and it is one of the least studied and understood illnesses.

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Replies to "I have CIDP -- chronic inflammatory demyelinating polyneuropathy -- an autoimmune form of PN that is..."

@sparshall Just so sorry for your illness. Just so sorry. LoriRenee1

@sparshall My thoughts and prayers are with you.