Finally found a neurologist who prescribed mestinon to see if it would do any good, as my AChR test was negative, and no one would ever run any tests beyond that.

She said, start with 1/2 pill (30mg) three times a day, and work up to 1 pill (60mg) three times a day.

But, me being me, who has a list of drug reactions and side effects longer than my arm, and having been floored by pediatric doses of some medicines, I decided to start with 1/4 pill (15mg) in case it did something evil to me like so many other meds (there's even an antihistamine, allergy med, that MAKES my throat swell shut, yes, I am allergic to an anti-allergic med.)

Well, THE 1/4 PILL WORKS!!!!! Other people can SEE the difference, it's not just me thinking it. I stand straighter with no conscious thought about it. I can walk, really walk, like a normal person, no longer shuffling along in pain and unsteadiness, at twice the speed I have been, with minimal shortness of breath. I'm not huffing and puffing to breathe if I'm talking while standing or walking. I can sit without having my head against the back of the chair, (or wall if the chair isn't tall enough) without being in pain or getting dizzy. My eyes can move to the right again (also have eye muscle problems), and I can look up for more than 2 seconds. IT WORKS.

If I save the third quarter-pill to bedtime, or "cheat" and take a fourth quarter, I am sleeping so much better, because I don't have to be so careful about what position I am in (I sleep in a recliner, because if I am not upright enough I don't breathe well). I have even had a few dreams this past week, I haven't dreamed in YEARS.

I am finding, tho, that by the end of the day I am exhausted. Not weak-exhausted, tired-exhausted, worn out. Figure it's because I am doing more in a day than I have for years and I'm not used to it?

The 15 mg seems to work for about 4 hours from time of taking. Or, it's worn off to the point where the upper back pain comes back if I'm standing, the sweating from the exertion of standing or walking comes back, basically things just fall apart after the 4 hour mark, they're decreasing before that.

So, should I work up to the 30mg, and then 60mg the doctor told me to, or should I just stay at the 15mg since it's made such an improvement for me, and move up in dosage when the need arrives, not just now because that's what I am supposed to do?

Doctor is difficult to get a message through to, their patient portal email is just general delivery, so it goes to the office and hopefully someone gets it to her. She didn't really think it was going to have an effect, why, I dunno, my ophthalmologist has been saying it was mg for about 5 years now (but no one local will treat anything without a blood test to diagnose) and I've had symptoms for over 15 years (was pregnant with daughter when it started, so weak and out of breath I could not stand and talk at the same time, the effort of microwaving my lunch and then walking back down the hallway to my desk had me so weak I'd just sit there, staring at my food, because I couldn't raise my arms from my sides to get it into my mouth).

My follow up appointment is in early January. I suppose I should try to get a message through to her now? But I don't see a reason to up the dosage yet, especially when the results I am getting now are wearing me out, what good could more energy/strength possibly do me? And wouldn't it be better to save the ability to up the dosage for when I need it?

Anything you can tell me about how it all works would be great. No one in my area knows anything about mg, nor do they care to. This doc is not local, hubby needs to take time off from work to get me there (I don't drive anymore because of vision), and having only been to her once, I don't know how she will take me claiming results from such a low dose. But other people can SEE the difference in me, including my physical therapist of many years, so it's NOT my imagination.