Hi. I just saw your post in the "sticky" thread above. Wow, you've been through a lot!
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Hi folks, I'm new! I am a grandma who hasn't felt well for well over 40 years. I had to quit work as a nurse in 2003 due to my health. A couple of weeks later I was so ill I could hardly get out of my recliner.
I have doctored for years and had gotten to the point that I was darned if I was going to die without a diagnosis. The doctors always said it was in my head. Finally got diagnosed with sjogrens in 2003 by lip biopsy---negative blood work though.
I was very ill much of the time and had lots of bad infections--MRSA and I also had Mycobacterium kansasii (a form of noncontagious TB) and had to be treated for one year with 8 antibiotics pills (3 different kinds) a day.
Eventually I was sent to a very good immunologist who changed my life. He believed me!!! His FNP did my work up and read through the 11 pages on one side, that I had written for them plus all the paperwork they had for me to fill out. The immunologist introduced himself the first day for a few minutes and in those minutes he told me he thought I had myasthenia gravis.
I had the nasal twang which I have had for more years than I can remember. I also had a little drooping of the eyelids. I could not believe it as I had been questioning docs for years and they would all tell me I didn't have MG or sjogrens.
Well, the immunologist also did a whole bunch of blood work and it turns out that I have extremely low t-cells. Like as low as an AIDS patient. This low cell count, however, is related to the autoimmune disease. I also have Bullous Pemphigoid and asthma.
This low t-cells count really explained all the infections I have had since the 1970's. He also diagnosed my Hashimotos and my titers were off the charts. I am entering my 6th year of IVIG as I can't have Imuran, etc due to the chance of getting bad infection. I just started Plaquenil this past summer and it has helped my energy level and decreased some of the bad swelling in my sinuses, nose and throat.
I will be visiting on occasion and am interesting in hearing about new treaments and other MG issues. I have never had a crisis for which I am extremely thankful. I have told doctors for years that I often felt like I would quit breathing. Now I know what that was all about. Be back later. gto
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I read this in Violet4941's post and wanted to put it here.
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He was very worried about me as my antistriated muscle antibodies were and are 61,000 and he just thought I was headed for trouble.
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Have you had a chest CT done? Do you know the levels of your ACh Receptor Antibody test? Did you have that done? With such a high antistriated muscle antibody count, I was wondering if you might have a thymoma. Have they ruled that out?
Did they do a biopsy to confirm the bullous pemphigus? I was wondering because discoid lupus can present like that.
With the low T-cells, have they come up with any immuno therapy for you other than IVIG?
There are a lot of well-informed, supportive people here. It's a great place to share experiences!
Annie