Originally Posted by catie

Blondie,
I'm also seronegative and MUSK negative. I was diagnosed with a positive tensilon test and clinical sxs, as well as some improvement with prednisone and IVIG.

I'm on Imuran currently, though having difficulty going up to a therapeutic dose without my white count dropping too low. We're giving it one more try with the Imuran, but if it drops my white count again, will probably move on to cyclosporine.

My primary sx is double vision, but I also experience both arm and leg weakness, which is sporadic. It took a long seven years to get a diagnosis. It's possible that I'm dealing with refractory MG at this point, due to the delay in treatment. I'm hoping for the best with treatment, but expect that the vision issues won't resolve and this may be the best it gets.

And, yes, the hot weather does increase my sxs, though my neurologist doesn't seem to think there is a connection.

Cate

Originally Posted by blondieslp

What is refractory MG? Just vision?

Originally Posted by catie

Refractory MG means that it is resistant to treatment.




Imuran is just one of the long-term immunosuppessants used to treat MG. Each person with MG is different in terms of how they respond to treatment. So there is really no "best medication" for MG. Imuran takes awhile to be effective (I think 3-6 months, maybe longer).


Also...when I was on prednisone my internist (who also specializes in endocrinology issues)gave me a glucometer so that I could monitor my fasting blood sugar at home. It's easy to learn how to do the test and you just need a drop of blood. You might want to ask your doctor about that.

Cate