Treatment part of Diagnosis

November 7, 2008 at 8:45 pm

My doctor explained that my response to IVIG became part of the diagnosis. I elected up front not to take Prednisone. I have seen too many long term side effects in people taking Prednisone for other illness.

My insurance is UNH. It took a month with me calling every other day following up to get approval for my initial IVIG. I should say trying to follow up. I would be forwarded all over the place. I was so concerned because I had read that recovery depended on how quickly you started treatment and I was getting progressively weaker. Since I was initially approved I am not sure of the correspondance between my doctor and UNH. I received a letter last week that said I was approved to continue treatment, but the letter went on to say that the approval did not guarantee payment. That is not exactly comforting since the treatments are $17,+++ each if I as the patient have to pay. But, I know I have made progress and assume UNH will pay. (UNH’s letters are so ambiguous).

One of the things I want to talk with the doctor about next week is maybe increasing my dosage. From what I am understanding from reading on this forum, higher dosage seems to have the faster results. My improvement has been at the loading dosage. I did not improve, but stayed the same on the maintenance dosage I received on months two and three. But it seems that I could possibly still increase my dosage from what I received on months four-six.

I realize I, like you, am at the beginning with this whole process and I have learned more about it from this forum than anywhere else. I am thankful that everyone will share their knowledge and experiences. I am not sure if what I have said here helps at all or just confuses the issue. But again I think my progress is justifying the treatment.