Probable Diagnosis CIDP other possibility HNPP
I had my 4 month follow up at Dr. Mark Browns Office at the Univ of PA in Phili
I went in there all versed on what I have learned here and pushed for immediate teatment after my physical.
The Doctor went into questioning on Family History as he did in the first two visits. This confused me. He has maintained that I not be treated as of yet,
He is not 100% sure on his diagnosis because my LP protein was normal.
He has ordered a genetic test for HNPP-Hereditary Neuropathy with tendancy for Pressure Palsey. Apparently this is one of the ailments that can be confused with CIDP. I have bilateral symtoms but one side is worse than the other. So Here we go again. I must wait 4 weeks on this test and may undergo a sural biopsy. this is a genetic condition that comes and goes causing the problems that CIDP’ers and other have. Problem with this is that there is not a treatment.
If I come back negative in 4 weeks, we will proceed with treatment for CIDP.
He feels that Once I start any of the CIDP treatment i will always require some form of treatment. so being I am currently on the mend, he feels I can wait until the results of this test are complete to start either Steroids or IVIG.
He told me it costs $250K per year for that teatment. Is it True??
Holy Cow! One treatment would more than consume my whole economy.