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Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)
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@trishh

@foxauthor good morning.
I have been diagnosed with CIDP but not all my doctors agree. Some say you have to have a spinal tap for protein to determine. I haven't and don't want one. I have small fiber neuropathy by punch biopsies of my feet and legs. But since that test, my neurologist said my illness was progressing up my legs and arms. I had a bad "flare" and after that he wouldn't prescribe my meds. Said my GP could do that!
I'm in a rural area and no one is familiar with CIDP. I hurt so bad in my legs and my arms are weak as well.
I'm on subcutaneous gammaglobulin for years as my immune system doesn't have those. My immunologic thought as well as neurologist that that would help my illness (es).
Something is happening to make me worse, I do have acute Lyme disease and chronic Lyme. My body is full of inflammation. I could go on, but my arms hurt.
Does this sound like what you have? I fall too.
Good luck,
Trish

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Replies to "@foxauthor good morning. I have been diagnosed with CIDP but not all my doctors agree. Some..."
kimegraves | @kimegraves | Jan 21, 2023

Hello Trish
I was diagnosed with CIDP about a year and a half ago! My first symptom was paresthesia in my lower extremities and severe weakness in my legs. I had an EMG that diagnosed demyelinating peripheral neuropathy, and then had a lumbar puncture that showed high protein levels and low WBC count…… That is one of the recommended ways to diagnose CIDP. You mentioned that you were on subQ immunoglobulins, is that helping you at all? Did you ever have IVIG prescribed or did you go directly to SubQ infusions? I also saw that you had Lyme disease, are you currently being treated for that as well?
I find that my diet plays an important role in my health and how I feel everyday. If I eat protein at each meal and try to keep my diet low in sugar I have more energy and just feel better in general. I also like to exercise three to four times per week, it may not be nothing more than a walk but it is important to be active!
Have you thought about going to a major medical facility such as the Mayo Clinic for consultation? Please keep us informed on you progress and I wish you well.
Kim

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