James Starkey
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The efficacy of a thymectomy seems to vary by age of disease onset. Early-onset MG occurs before age 50, late-onset after 50. Here’s the most recent study I’ve seen on this issue. It appears that the procedure is not as reliably effective for late-onset folks:
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Hi, Richard.
I always thought of remission as a black or white condition: you are either in remission, without symptoms, or you are not. MGFA defines the term as:
- Remission: symptoms disappear completely for some time even without treatment
Implied in the above MGFA definition is the fact that any remission may be temporary. I have seen elsewhere that “remission” is used to describe a spectrum of conditions. Apparently one can have “complete remission” in which there are no symptoms (and, I believe, the antibodies are also gone). Pharmaceutical remission is, to my understanding, a condition in which medications effectively eliminate symptoms, but the MG antibodies are still present in the bloodstream. I have also see other gradations of remission in which some symptoms remain but are controlled well enough that they do not cause significant impact on one’s daily life. I do not know how common these variations may be. Complete remission is rare, but it does happen.
Sorry I could not be more helpful.
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Thank you, Anne Marie! Your comments were very helpful. I was unaware of the personal cooling fan, but I think I’ll look into that, too. Perhaps it would keep my head a little cooler, too.
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Does anyone have experience using a cooling vest? Did it make a significant difference?
Heat is a problem for almost all of us, I think. And heat is relative. Before I contracted MG, I had acclimated somewhat to Texas climate and was able to stand temperatures of 80-85 degrees without a problem. Now mid- to upper 70’s is problematic after 15-20 minutes exposure. Thus the interest in a cooling vest! Looking forward to hearing your experiences!
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The ultimate goal my neurologist & I set once I had to begin steroid use was for us eventually to titrate me completely off Prednisone, if possible. Some folks with MG are never able to get off prednisone completely, but I did under close observation by my neurologist. Prednisone and steroids in general are “nasty” medications with multiple side effects, some serious. I recommend developing a plan with your neurologist to reduce and eliminate steroids altogether if possible. I agree with Bli’s comment that Mestinon (Pyridostigmine) has very few side effects and is considered one of the safest MG medications. But that is definitely a topic of discussion with your neurologist. I only mention these things to emphasize that steroids are a two-edged sword: They can be crucial in stabilizing MG, but long term use is quite a risky matter.