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Hi ariella!

good to see you on board! I hope that you are feeling alittle better and are getting to the bottom of things.



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thanks for checking in :) . we miss having you around more often - you're definitely not the only one who has been quieter lately - but will take you whenever we can get you! let us know how you're doing when you're able...

:) melissa

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So, here's the update. I take 60 mg of mestinon 5 times a day (roughly every 3 1/2 hours) It takes care of the POTS as well as the muscle issues. I can tell if I'm late in taking a pill--even 10 minutes late, because the POTS symptoms kick in. When I was on a lower dose, the POTS would get bad in the evening.

It also helped for the fatigue, as well as for the unusual pain which I thought was circulation, but turned out to be muscular. When I'm overtired or otherwise sick with any kind of infection (as in now), the pain comes back. The very specific pain where the T-spine and C-spine meet seems to have just been muscular as well, as the mestinon helps for it. The pain was probably aggravated by holding and bending over a guitar. When I play too long, the pain comes back, even with mestinon.

Unfortunately, my breathing issues are still not under control. I also slur my speech from time to time like a drunkard. Mestinon helps, but is not enough. The next line is to add prednisone or immune suppressants, which is not great. Alternately they can do plasmapheresis, but they usually like to reserve this option for real respiratory crisis. Right now I have another infection, so my breathing is very difficult (the muscles that work the lungs are weak). I'm thinking about checking into the hospital tomorrow for treatment if it gets even slightly worse. It's holiday season here in Israel, and would be a real bummer for my children not to have their mother at home for the upcoming succot holiday, which lasts a week. We don't have extended family here. The community is wonderful, but it's hard to leave a family of five kids.

I miss all of you, and miss writing in. It's been really hectic. I go between functioning pretty well (at which point I'm busy catching up and don't have time to sit by the computer) to crashing (at which point I don't have strength to sit by the computer). But I do check in from time to time, and wanted to let y'all know that your friendship means a lot.


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