Quote:
Originally Posted by Maiden8680
Haha, we could start a club ;D
To be honest, my myasthenia is also somewhat mild. We (doctor and I) are doing a non-medical experiments now, by seeing how much I can do (like hours per week at work) before I get too tired overall and my symptoms act up, because my next option would be steroids and since I am only 26, not me or any of my doctors want to go that route for now. So basically I'm just trying to "deal with it", and it's working pretty well I would say. I had a few rough moments, but otherwise I think I am doing alright without meds. Once I stopped the Mestinon, my speech went back to normal, and all the twitching and tingling stopped in all my muscles. The only thing not effected (both good and bad) was my eyes.
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I had the first bout of my illness about your age and then it totally disappeared for a great 15 years.
Mestinon worked to some extent for me, but it was hectic and unpredictable. For the same dose I could have a dramatic improvement, no change or significant worsening with fasiculations (muscle twitches as you call them)
I too have MuSK and now take a very low dose of its cousin-mytelase along with Vospire (which is long acting ventolin).
With this low dose I only have muscle twitching when I overdo it and/or my illness is less stable. It actually serves as an excellent warning sign to slow down.
I hope your illness disappears on its own forever.