Member
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Join Date: Aug 2009
Posts: 642
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Member
Join Date: Aug 2009
Posts: 642
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If you are seronegative, and do not have a thymoma, then a thymectomy is likely to be of no real benefit. I was "seronegative" when I had my thymectomy, and it didn't do a thing to help me. Three years later I found out I had MuSK MG. I was on Cellcept, Pred and IVIG and the test was still positive.
I did have the thorascopic thymectomy. It was a non-event, which is good since it was useless. I was part of a 10 year study that tracked the results between seronegatives and seropositives. Now I just wish I had my thymus back, because I believe it does serve a purpose for most.
I also have a daughter, and she was 1 year old when I got sick. I understand the NEED to do everything you can. It is very scary. However, she is now almost 16 and despite a very severe case of MG, we are making it! You will, too!
Good luck with your decisions.
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