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I was only recently diagnosed with CIDP, but I have had it for over 13 years!! I have been unable to get ANY MEDICAL PROFESSIONALS to do ANYTHING to even diagnose it, let alone treat it because of how I got it!!! Johns Hopkins even said to me directly, on the phone, "If you insist on attributing your illness to "that", WE WILL NOT EVEN SEE YOU!!!!!" They have hung me out to dry (more appropriately - to die) because of a huge lawsuit back in 2001. I was attacked by something that attacks and eats the myelin sheath off the nerves!!!! And I know about demyelinating diseases because I had a little grand niece die at age 2 1/2 from Batten's Disease! ---- Frankly, I just don't know what to do with myself. It's a little bit late for early intervention!!! But I do want to live long enough to complete a very important book I have half written, and continue motivational speaking. Lynne Henry 5/14/2023
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I’m with you having been dealing with this disease about 11 yrs now.
Been thru 7 neurologists, all the testing you could imagine, all the meds, and also IVIG infusions which did t work for me either.
Right now my right hand is numb but my left is ok.
I can’t write or cry anything due to the fact I’ll drop it.
Seems like my whole body is affected by this CIDP diagnosis.
Starts with my numb feet and goes all the way to my lips and face. My balance is non existent also.
Don’t know what to do anymore, at my wits end and getting no help medically.
Ben told I’m a unique person!