Tired Of Waiting: Blood Tests Then Wait, Wait, Wait

So those of you that have read the last few posts know that I have been waiting to see my new neurologist, this happened this past Tuesday March, 18, 2014. I told her my concerns, my trembling inside and out, shaking the jerking getting worst, my symptoms getting worst since the Imuran has been discontinued. I also told her and showed her my symptoms matching the MG list and said I have never done this before but this describes me to a T. Perfect description to what I experience with my muscle weakness and pain. So she agreed to do blood work for the MG, which is  MG test and a anti-musk blood test also. For the He symptoms she had me get again the thyroid antibodies tests, including the tpo anti-thyroid-peroxidase antibodies and the thyroglobulin antibodies and the cpk test for muscle inflammation. The poor girl at the clinic drawing blood had never done any of these. She kept on saying she was so sorry for taking so long, and I kept reassuring her it was find. So my thoughts are on these tests, is that I have only been off Imuran for two weeks, after being on it for four years how is this going to come out with an accurate result. We will see.

I am looking into finding a neuromuscular Md as many are telling me to do so. My muscle issues is nothing to screw around with. All the neuros I have seen have not been specializing in muscle part of the neurology. I also know I need a special kind of emg for diagnosing MG. One where they repeatedly zap the same muscle which makes sense, since that is what happens to mine, they tire out, run out of energy. So that is why I am looking, found one in Madison, and one in Milwaukee at Froedardt. So with Bob and I not driving distances again I would have to depend on others I hate that

Then as I was leaving my appointment with the new neuro appointment, she did say to me that she wanted me to see someone else from now on, in two months, the other will trade off with me to another neuro in the same clinic. I am not sure I like this set up. So another concern to me. I do not feel she felt she was able to help me, I was over her head.

I also told her I want IVIG and Dr. Santillan had recommended that for me next and she said we will wait to see the blood results. I am not happy about that either as I wanted to get this all started, find out if I would qualify for it or not,. I told her the rheumatologist  though I was on it all ready wants me off of the Imuran, she said why, we have had people on it for years. So I hate going to new doctors I just hate it. With the autoimmune problems that I have I do not need someone to screw with me. So now I wait, again for the blood work for which I am sure will be negative because of the autoimmune suppressants I have been on. .

I have noticed that I am losing my voice again, being hoarse as it was a few years ago before the Imuran was working, my swallowing is becoming an issue again too. So I guess the Imuran was working.

I have my first appointment made for the lip biopsy, I really do not get why I have to have an appointment first before they do it, just do it right. I know what it is. So that will be another wait too.

Oh well wait, wait, wait, Not that I am so busy, but I hate waiting.

Well will keep this updated.