I am on 10 Mg per day. My PCP told me to stop calcium at my age (57) because it wont help my bones and may calcify my arteries. I will ask Dr Franklin
Thanks
Sandy

There is a learning curve where MG is involved, and you will make mistakes and learn a lot along the way. After a few years (yes, years) you will have a lot more confidence and experience and these strange and scary incidents will become fewer and the "well managed" times will become more of the norm.

Thank God for that.

I am doing better on 60 Mg of mestinon 3 times a day.(for now)
My body has always done strange and scary things with medications. I have been taking herbs with no problems for years. I really hate having to rely on these drugs for my well-being.

The experience here and willingness to share is amazing!! My friends and family just don't get it.
Sandy

Sandy, If you don't mind, I wanted to add a couple of thoughts to the discussion.

The MG expert who diagnosed my MG told me that some MGers (incorrectly) describe weakness as numbness. Think of how your arm, for example, feels when you sleep on it and it goes numb from circulation being cut off. Muscle weakness can get so bad that your muscles feel "paralyzed." At that point of weakness, they will feel heavy and "numb."

Mestinon does not effect all muscles equally. And not all muscles behave equally. MG is considered a "head and down" disease. It normally begins (not always) in the head/neck area. Some people believe that it takes the larger muscles longer to experience weakness. Whether that's due to a concentration of nerves or smaller muscles, smaller muscles tend to be more susceptible to Mestinon dosing. Although, Mestinon doesn't do squat for some people's ptosis and double vision. This is seriously a stupid, unpredictable disease and what is normal for one MGer isn't for another.

For example, if you have mild ptosis and moderate shortness of breath, Mestinon might get rid of your ptosis but not completely get rid of the SOB. If you take more Mestinon, hoping to help your breathing, you might O.D. the ocular muscles and get twitching. That's one main reason dosing with Mestinon is tricky.

Also, some people need less Mestinon when they're not doing anything. And more when they do. So that standard "take 3 - 4 doses of 60 mg. per day" thing that doctors say isn't always the best way to go. It does take time to figure out what your body needs. For me, my body needs that 80 to 100 mg. every day, every 3 hours around the clock. It needs a bit more (100 mg.) when I run errands. I can't do the other drugs, however, so my situation is different.

There's also the possibility of taking less when you're not doing anything, like 30 mg. more often and then a higher dose when doing activities. It really is a trial and error thing, unfortunately. It's not like other drugs where you take a standard dose at specific times. Since MG is variable, the dosing of the drug(s) can be too.

Don't play around with dosing without first speaking to Dr. Franklin, unless he has approved that. You're not only protecting yourself but your doctor as well.

I hope that helps. And I hope you're writing down what you take and when and any symptoms, etc. It helps when you're first starting out to look back and know your pattern of use/needs.

Annie

Thanks Annie; your two cents is always welcome!
It is very reassuring to know that I can ask this group anything and get such thoughtful and helpful answers. I don't know if the numbness is weakness. I have not had it since I dropped my mestinon dose.

I do feel much better overall. My ocular symptoms are still troublesome but better also. I am hoping the prednisone is kicking in now. I see Dr Franklin's NP tomorrow. I will get clarification on how to finesse my mestinon.

I leave for Italy on Friday. Fingers crossed!
Sandy

Hello Sandy,
Whatever happen with the numbness in your mouth. I'm experiencing the same numbness in my upper teeth, upper lip and left side of my nostril. Just curious I scheduled an appointment with my neurologist so hopefully we can figure something out.

Hi Kmill,
The numbness only happened once in my first few days taking mestinon. I take more now and have never had it happen again. If I recall, the on call doctor had me lower the dose until I saw my regular doctor. I hope you figure out what is going on. Good luck
Sandy