Quote:
Originally Posted by shalynn
Teresa,
I have not had a Tensilon test. Did you have yours done in the hospital? Did you have any side effects from the Tensilon?
I have seen so many neuros. I'm rather happy with the one I have now even though she is 3 hours away from me. Still, I want one who will continue to look for answers for me. I'm afraid that when she sees what Mayo said....not much, she will give up on me. I went through most of the local neuros early on. No one would take me seriously.
If you don't mind me asking, what was your iffy test? Was it the Tensilon? My binding antibodies came back at 20, which I think is almost borderline, but I'm not sure.
Is there any way we can post pics somewhere? I could show you my eyelid drooping. lol
I will be seeing my eye doctor the second week of July I will definitely bring all this up to her. She may be one who can advocate for me.
Thanks again. And, sorry if I've asked too many questions.
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The Tensilon test was done in the doctor's office - it was quite interesting.... The doctor did see a difference in my eyelid, but my eyelid droop is much less severe than what she normally sees. As I said, we caught this QUITE early in the game, and quite by accident (see my other posts for more info).
My "iffy" test was the EMG test - one of my muscles showed slightly increased jitter, but it was very slight. My doctor wasn't sure at that point if I had MG; it wasn't until I started a trial of Mestinon that we realized that I had it.
Thankfully, my doctor was willing to let me be aggressive in approaching this disease - be sure and find one who will work with you in that regard. You are the person who knows more about how you feel than anyone else, and doctors are human beings just like the rest of us. They generally know what they have been taught, but the good ones are willing to say, "I don't know everything there is to know, but I am willing to work with you to find out what is wrong with you".
If you want to do a trial of Mestinon, INSIST on being allowed to try it. If you don't have MG, you WILL NOT be able to handle even the smallest dose of it (15 or 30mg). I was able to tolerate 90mg, even though my blood test didn't show an AChR antibody. However, when I tried 120mg, I started feeling nauseous and I had excessive salivation. The medication is short-acting (4-6 hours), so it wore off fairly quickly. You can also take Imodium if you get too much Mestinon in your system.
A good doctor will be willing to let you try Mestinon, just to see what happens. If they hesitate, just tell them that you are willing to absolve them of all risk. It can't hurt to have that data point, and if it doesn't work, that is an indication that you need to look to something else as the cause of your symptoms. If it DOES work, then that is a pretty good indication that you have MG, and you and your doctor can go from there.