Hi Susan,

It's so funny... I am really on-the-fence about the possibility of excessive dosage. Part of it is that this is all so new to me that I don't fully trust my judgement, but something feels "off".

I really appreciate your descriptions of how the Mestinon interacts with your strength and muscles. You help me begin to figure out what to look for, what to expect and zero-in on where the tipping point is. That's really helpful.

She doesn't have too many strength issues (yet), but I've been keeping a close eye and taking mental notes. About a week ago she was complaining about her neck being sore (she thought she had slept wrong), and I'm like, Bingo! That's a symptom. Then one night after a particularly long day, she said she had a pain in her chest and felt as though she couldn't draw a full breath, and again I thought, Bingo! That's a symptom.

Prior to this, her main issues were with vision and lock jaw. As art lovers, she said that the best way to describe her vision problems was that, aside from one side of her vision being lower than the other, things looked "cubist", like a Picasso painting. That has to be really rough to deal with. And of course, your brain tries to compensate as best it can, but the problem really reveals itself when it comes to depth-perception. I can see her struggling and of course it breaks my heart.

For several weeks she just gave up on most foods simply because she couldn't chew (masticate) virtually anything. Between this condition and previously having Gall Stones, she has lost a mountain of weight. Though the weight loss is beneficial (she is a diabetic), the quickness and the causes for it have only come from suffering, which I wouldn't wish on anyone.

Right now it would be really great to know if the Mestinon is helping, or even if it is the right amount, but with all of these side-effects it's virtually impossible to get a read on it. After I told her to cut back to a half a tablet, the severe stomach cramps went away and she actually had an appetite, which was great to see. She didn't seem to get much benefit from the meds - her vision was maybe a little improved, but not much. She seemed to be able to chew the food she suddenly craved, but the things she ate weren't too challenging to begin with, so??

Now she's back to a full tab and she says her vision is perhaps a bit better, but I see that she's beginning to feel sick from it again, with a sharp gut ache. We talked with her doc and he prescribed Hyoscyamine Sulfate, which is for IBS. I just picked it up today so we'll see if it helps.

It's just weird, when she takes the Mestinon, she just seems to feel lousy. That's the best way I can put it. It doesn't seem to do much for her symptoms, if so it's incremental, but overall she just feels like crap. And since I don't know, I'm not sure if that's because she's taking too much (60mg - 3x's/day) or if she is still just getting used to the medicine? And not knowing is driving me mad.

When I convinced her to go down to a half-tab she got her appetite back and really seemed to have a spring in her step. Now at a full tab I see her sliding back to a miserable state. And everyone is telling us that she just needs to give it time for her to adapt to the medicine.

So that's where we're at, and I'm left banging my head against the wall until either she actually does "adapt" or we realize that something isn't right.

By the way, there is no evidence of your DM here on the site, but I did see it in my email since I have notifications turned on, and I did read some of your message in my email and thought, "I'll read this on the site where I can respond" but now I'm here and the message is NOT! So I'm going to go back to my other PC where my email is loaded and copy that text over here:

I am going to respond via DM, so if you DON'T see a message from me then it isn't working for some reason, in which case I can email it or whatever works for you. We could discuss on here although I think it's a bit off-topic for the forum and I don't want to disrespect that, but I do have thoughts about what I've read so far and look forward to comparing notes. I may even have some tools that might be helpful, or perhaps you've already trod the well-worn path of WordPress and what I have to offer is old news. But do check your messages in a bit and see if mine made it through...

As always, wishing you good health and the strength of a hundred teenagers,
Daniel