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CIDP, While I am waiting for the tests, genetic?
Neuropathy | Last Active: Sep 17, 2023 | Replies (44)Comment receiving replies
That’s truly unbelievable and likely criminal that the last neurologist never mentioned it. I also have CIPD long motor neuropathy. Same as yours with demyelination and regeneration. My doctor said at one point the regeneration will not keep up with the demyelination and that’s when I’ll be in trouble. I also have a primary immune deficiency and received IVIG for that and had no problems. I remember going through testing for genetic link (none found) but you have your father as a direct link. I have no clue what difference that makes but if you do, I’d be curious to hear
Replies to "That’s truly unbelievable and likely criminal that the last neurologist never mentioned it. I also have..."
Sorry to hear about your problems. My neurologist said and it’s in the literature that CIDP is not a genetic disease.
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@sb4ca thanks for writing. You mentioned a few things that I am not familiar with. Long motor neuropathy is one. What is that?
Also, regeneration. Nerves don’t regenerate as far as I know so I don’t understand.
This whole situation is just so frustrating. I don’t know which one of my neurologists to “smack” first!
Even my current neurologist. I told them awhile ago that I felt like I was getting worse. All they did was prescribe a low dose blood pressure medication. I think they should have done testing to see why I was feeling worse. No, push the drugs…
Oh, well. I watched my dad go from a vibrant retired man who walked several miles a day to a guy sitting on his walker seat at the park. I guess that’s why I’m so stressed.