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Old 05-03-2014, 05:23 PM #1
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Maggiemayhem Maggiemayhem is offline
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Join Date: Oct 2013
Location: Prescott, Arizona
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Maggiemayhem Maggiemayhem is offline
Junior Member
Maggiemayhem's Avatar
 
Join Date: Oct 2013
Location: Prescott, Arizona
Posts: 38
10 yr Member
Default Timespan dosage update

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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