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