← Return to Anyone been diagnosed with CIDP? It's very rare

Discussion

Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)
Comment receiving replies
@kimegraves

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

Jump to this post

Replies to "Hello Trish I was diagnosed with CIDP about a year and a half ago! My first..."
trishh | @trishh | Jan 21, 2023

@kimegraves good morning. I am being treated for Lyme disease as I have 2 dogs and guess I got bit again. It was Lyme disease they think which started the neurological decline back in 2000. I was a Park Ranger in college. So lot of misdiagnosed things until he did ,infectious disease in Tampa, a lot of Lyme testing and I had the worst case he'd seen. I went on treatment and got worse. I was paralyzed 3x and had to leave my RN career.
Chronic Lyme and small fiber neuropathy which they say has progressed up legs and arms.
Before I had to move as my Tampa doc ordered IVIG and diagnosed the CIDP. I kept falling no use of my legs. So I don't know but I have been on IVIG in infusion clinic for years then offered subcutaneous ig and it is so convenient. I wish I could go to a research hospital but I live so far and can't drive. Have not the money, my insurance would not pay for Center of Excellence in Richmond.
I was vegan, but started eggs for protein.
Have frequent flares and I exercise by walking dogs, stationary bike and dance.
We had a wonderful FB Support group for CIDP but the leader got too sick.
Again my arms tired, more later .
Trish

VIEW AND REPLY