Quote:
Originally Posted by sham0968
One thing that I do not understand is when I was in hospital, why the neuro did not check my thymus since he suspected mg. The medical doctor admitted me and called in the neuro. The neuro said he was going to do a bunch of test to reassure that I was not having a stroke because of my stroke.He told me that he belived all the test would be good because he believed I had mg and he had no way of testing it. But I don't understand why he did not check my thymus, he checked everything else.
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They need to do a chest CT scan with an IV contrast to see if you have a tumor on the thymus. These tumors are usually benign. If there is a tumor a thymectomy is not indicated. It is surgery and you were probably in no shape for it at the time. Have you had the CT scan yet?
Even with the thymectomy it can take 3 months to a year to for symptoms to lessen or be eliminated (remission, not a cure). Here's the kicker, it does not mean that symptoms will not return. There are no quick fixes and permanent solutions. I was actually hoping for a tumor, believing that if the thymus was removed, I'd get my life back. I learned here that it does not work that way.
Did your blood test show positive for the antibodies? According to my test "approximately 85-90 percent of patients with myasthenia gravis (MG) express antibodies to the acelylchoing recptor (AChR), . . ." But even if this test is negative, it does not mean you do not have MG. Sometimes a positive test will occur long after symptoms develop. Some people with MG never show this particular antibodies. That is the frustration nature of MG.
It not fair and I wish I could wave my hand and lift this burden from your shoulders, but it may be something you have to deal with for a long period of time. But one can still have a good life. You will develop a strategy for dealing with it. You are in the right place to do it.
If you have been diagnosed with MG, push your doctors to start treatment as soon as possible. See the text of the the fax I sent my doctor that appears in the thread "Questions" that you started:
http://neurotalk.psychcentral.com/thread200357.html
The first step is usually Mestinon. Sometimes that is enough to greatly reduce symptoms. It is also very important to get rest and sleep. MG symptoms are much worse when one is tired. Keeping a good attitude is also important. There will be good days and some bad days. You will be able to maximize the number of good day and minimize the number of bad days by relying on the knowledge and experiences of the kind members of this forum. You are not alone.
-Mark-