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Old 01-23-2017, 01:36 PM #5
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Juanitad Juanitad is offline
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Juanitad Juanitad is offline
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Join Date: May 2009
Location: Eastern TN
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15 yr Member
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I think overall it has. I have had a couple of crises since the thymectomy, but I could tie them to infections (UTI, kidney stones and kidney infection). I do IVIG weekly (low dose) and take mestinon timespan and regular and Imuran (which we just lowered the dose of because it seems to be affecting my blood values).

I have also done cyclophosimide and Rituxan. The main thing I have learned is that you have to know your body and know when it is going off track. I worked for 12 years after mg diagnosis but retired on disability at age 62 because I realized the stress was really starting to take a toll on my mg. I was in an upper management position and when my company was bought out, my duties changed drastically and my body just couldn't handle the stress.

I have done much better with the mg since I retired. As I said above, be aware of your body and what is happening to you. Also, I try to stay on top of the latest research and what the new treatments coming up are. I have a great neuro who is willing to work with me and calls me his guinea pig because I am almost always the first of his patients to want to try a new treatment. If I do well, he is more willing to talk to other mg patients about new treatments when they are having similar problems. I try not to try new treatments for the sake of experimentation, but I definitely think being proactive has helped me manage my mg for 16 years.

Good luck!
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