Reply To: Second Nerve Conduction Study, What to do?

July 23, 2012 at 8:47 pm

Got my results today and the results are the demyelination is worse and now there is some axonal damage. Haven’t stopped crying since. Even the lab tech that assisted said they couldn’t believe how horrible my results were compared to how strong I seem. My doc said she wants to do steriods first for three months (possibly every other day 1mg/kg which not sure how much that is) and then taper off. Question then is if steriods aren’t a cure, how does that help long term. She also talked about immunosuppresents next if needed but that we need to start with steriods first b/c if not, insurance won’t cover immunosuppresents. She talked about the possibility of a nerve biopsy as well, even though she said she is sticking to (at this point?) my diagnosis of CIDP. Should I get a second opinion? All my original tests pointed to CIDP? My family keeps pushing me towards getting another opinion but I keep saying that I have not heard of yet any new treatments (other than stem cell which I wouldn’t be eligible for yet) that my doc isn’t aware of. Just so sad right now, this really sucks.