Quote:
Originally Posted by AnnieB3
The Acetycholine Receptor Antibody test is one of two basic MG tests, not treatments. It includes binding, modulating and blocking antibodies. Did no one do that test for you? What about the MuSK Antibody test? The fact that you don't know that makes me wonder about the care you are getting. That's the least a doctor can do to test you for MG.
Ocular MG can progress to generalized MG. There's no way to predict if or when that might happen. A thymectomy might help but, again, it's not a done deal to keep MG from progressing. So stay aware of how your muscles are doing!
You have the RIGHT to sit down with your neurologist to go over your situation. I hate when they act like they can't be bothered. I feel like saying, "I can't be bothered to pay your bill either." 
I hope you don't get worse. I wish we would all get better.
Annie |
I had a blood test for MG when I first started showing the drooping eye and when that came back positive, I had the resistance test done by the neurologist - Where he pushed down on my arms and legs and had me resist. After several repetitions showed muscle weakness, and confirming the drooping eyelid, he agreed that the blood test was right, which led them to send me to get an MRI, that showed the Thymus with a tumor. I then got a chest X-ray and had surgery. After surgery another chest X-Ray, before I was released from the hospital. One week home and I ended up with a CAT SCAN which showed I had a small lung infection. That cleared up after two rounds of antibiotics.
Now I just have the vision problem where by eyes are not always aligned correctly. This is a new development but after seeing the neuro ophthalmologist on Friday, she thinks I might be having complications from Lazy Eye surgery that was done some 20 years ago. One theory is that I had MG even back then, and now after the Thymectomy, the results of that Lazy Eye surgery, (which tightened up my eye muscle), may now be too much of a correction.
Will wait a bit and see if things straighten out before I consider surgery to help my eyes align better. My eyes are much better without the medicine. Don't notice any other weaknesses. As I think I mentioned before, I will meet with the assistant to my neuro at the end of the month, and I will be asking lots of questions, and also requesting to see my actual neuro at that time. I would like to have a complete workup again, and I will ask about the
Acetycholine Receptor Antibody test, as I would like to know if I am in remission or perhaps cured. Won't that be wonderful?