Dr suggesting steroids by mouth and inferon
Dell’s mom, Lori , suggested I contact as I was very disappointed and stressed tonight after my husbands app. with Doc. Bill (my spouse) is scheduled for nerve bioposy and he was not going to get one if spinal tap showed cidp as we all except but the spinal tap showed nothing and he said it could be he is untreatable. A clinal test once done of people with no results and that is what they came up with, however he still thinks he has cidp.
Docs game plan are steroids (by mouth) and then later imuran. I have read about from a few tonight and it sounds not good. I also saw where you went to a conferance and looks like ivig is not done as much maybe because of the cost.
This doc thinks his plan better plus hard to get patients off ivig. and expense 10,000 every 6 weeks. I would like him to get another opinion but he says he is tired of waiting . Lori got Dell in right away but maybe because he was to bad. Bills apt for nerve is Monday and 2 weeks later for results. Does it really take that long. My Bill says doc probably waiting because of imuran and Doc said waiting for healing of foot first. Does this sound logical.
Have you heard of spinal taps showing nothing and in effect some patients cannot be treated. This was a study he read about. We are hoping he does have something treatable.
After giving my husband some info from this site he now says maybe he would rather have ivig.
Please contact me