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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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As promised, here is an update regarding my dosage issues with timespan.
After my last post I experimented with my meds. Taking a timespan in the am and one in the pm resulted in uncomfortable side effects. Twitching, cramping and spasms. I then split the timespan taking 1/2 in the am and 1/2 in the pm. This, however, didn't work for me either. It wasn't enough. I then tried the above with the addition of a 60mg in the afternoon. This was too much - back to the twitching, cramping and spasms. Luckily, I saw my neuro last week. I was honest with her about my experimenting and after she 'clucked clucked' me a few times, she suggested I try the following: 1/2 timespan before bed. 1/2 reg mestinon in the am and another 1/2 mestinon 6 hours later. She said take more if needed. I started this new regimen last week and, so far, it's working for me. Most of my symptoms have been addressed, however, I still get very tired after a few hours of activity. The best news I received from my neuro is that she's holding off on putting me back on prednisone. She reminded me that I only have a 'mild' case of MG. I wish she could have seen me last November when I couldn't walk without assistance or a cane. Oh well, I guess the term mild is subjective. I'm just very grateful, being seronegative, that I have a clinical dx and am receiving meds. My last dr wanted me to go home and meditate then put on my hiking boots and climb our local mountain. I shared this info with my neuro and she said "are you kidding me, doesn't he know you have MG". She then recommended a new primary. Life is good! Sorry for being so long winded (actually, quite a feat for someone with MG) I hope everyone is doing well Jan |
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