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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)
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@debbiewave

HELP My husband had covid in mid-October 2023, had his covid shot mid-November 2023 and collapsed on 12/24/2023. The neurologist diagnosed him with peripheral neuropathy, saying it was genetic. He did not do any genetic tests. Nobody will listen to me and MAYO is not taking new neuro patients.
I am at wits end. I found a nephrologist- yes nephrologist to help me with tests. His spinal tap showed somewhat elevated levels of protein, but he needs a nerve biopsy. I cannot find a doctor to help us. It has been 7 months. We are desperate.

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Replies to "HELP My husband had covid in mid-October 2023, had his covid shot mid-November 2023 and collapsed..."
Becky, Volunteer Mentor | @becsbuddy | Jul 25 10:15pm

@debbiewave Your husband’s situation sounds so difficult for both of you. Is he currently being seen by any doctor? If you live in the Mid- west, there are several options.
this first link is about the numerous hospitals that partner with Mayo.
https://www.mayoclinichealthsystem.org/?
Other options to try are comprehensive medical centers and university teaching hospitals. You can call the hospitals directly and ask for what you need. That’s what my husband had to do. When I was at my worst and getting no help from our local hospital, my husband called the university hospital in Denver and asked for an appointment. I didn’t make that appointment, though, because I got very sick and ended up in ER. Then our hospital called the university hospital and asked for help. They told the ER how to treat me! And that’s how I came to still be here and telling you what to try!
What do you think you’ll say when you make the calls?

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