I called today to get the results of Maria's tests. I found out that the doctor had surgery this week and is on medical leave, thus explaining why we didn't hear back this week as planned. So, the information I have is based on the nurse's interpretation of the notes the doctor had made on Maria's test results, but the doctor wasn't there to confirm or explain anything.
The CT scan did not show any evidence that the thymus had grown back. The nurse was very pleased to share that and couldn't understand why I didn't think that was just great news. I was hoping this would be the easy solution to the problem, but I guess not.
The blood work did confirm that she has MG. This would seem obvious, but we have never had this confirmed even though we have been treating her for MG for years. There are two different blood tests that can be done for this. My understanding is that one is quick and dirty and isn't terribly accurate, but it is cheap. This is the one our previous insurance company would pay for. When we did this one in Michigan, it came back negative. The other is more expensive and involves sending blood samples to Mayo Clinic. This it the one we had done this time and it showed very elevated levels of whatever they were looking for.
Something from this round of testing also suggested to Dr. B. that Maria needs to see Dr. Z. This is the same doctor she sent us to with Jon Felipe when he was having lots of seizures back in December. We liked him a lot. We hadn't been told that yet, but we now have an appointment to see him on June 3. So, we'll see what that is all about.
In the meantime, she is doing okay but occasionally gets frustrated with how weak she is. The last two nights we sat in the balcony of the auditorium for the kid's concerts and it was exceedingly difficult each time to get Maria up those stairs. She is just too weak to be able to climb steps like that any more and she is too heavy for us to carry.
As for my surgery, still no news. I do know that the insurance company asked for more information from the doctor.
No comments:
Post a Comment