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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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@SusanEllen66

@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.

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Replies to "@sb4ca thanks for writing. You mentioned a few things that I am not familiar with. Long..."

Hi Susan. You’ve likely have heard of small fiber neuropathy. That has a variety of causes and could be restricted to an area as small as a someone’s feet and is typically a sensory dysfunction (what you feel). Motor nerves are much longer nerves that effect the action of the muscles (to move)and typically lack sensory dysfunction (ie numbness). In CIDP the motor nerves have significant delays on testing. And it is true that nerves have an incredible way of rerouting and healing. Otherwise this disease could paralyze someone fairly quickly which it doesn’t. We’ve all heard stories of someone in a bad accident who initially can’t walk etc and the incredible comeback they show by walking again Same principal. I really can’t imagine having that visual about your dad while you are now facing this too. Please remember everyone is so different and that your Dad’s story isn’t your story Think of the incredible advances in medicine that have been made since his time as well