1. How long does it typically take for the Mestinon to work? My doc said I'd have to play around with the dose, but he didn't give me too much information in this area. I tried a half tablet (30 mg) both yesterday an today, to no avail. I was hoping for an immediate response. Am I taking too little (or too much)? If anything, the breathing seems a bit worse, but it's definitely not improved.

Hi there. I am also newly diagnosed, 25yr old female, so I know the confusion youre feeling right now. As far as Mestinon, I've been taking it for about 10 days, and noticed an effect about 45 mins after taking my first dose (60mg) A heads up: TAKE WITH FOOD! I've had terrible stomach cramps when I take it with just water or milk... Also, You have to really "feel" out your meds. What I mean is, I was prescribed 60mg 3x a day, but I noticed after about 4-5 hrs my first dose would wear off (double vision would come back, wobbly legs) however, if i took another 60mg at the allotted time, I would get so sick, so now I start with 60mg and the rest of the day take only 30mg or half a tablet. Every one is different and you really need to keep a good line of communication open with your neurologist about how youre feeling..


2. Over the course of the last 6 weeks, my symptoms have seemed to wax an wane. On some days I seem to be able to talk normally, on others my voice is taxed just saying a few words. Same with the swallowing and breathing, some days are good while others are bad. (This was before the Mestinon.) Is this up/down on the symptoms normal for MG?

Yes! My neurologist here in nyc specializes in MG and told me it is very common for symptoms to flucuate. Ive noticed some days I can walk normally, but on hot days or days when I am stressed, I wobble and stumble all over the place. This becomes tricky when you are taking the Mestinon because you dont always need the same dosage. You should keep track of your symptoms and what you were doing just before they got better/worse, and use that to consult with your neurologist about your medication.

4. As far as this EMG that has been ordered, I overheard the nurse saying it was for both arm and legs. However, I have not have weakness in my arms and legs. Is it normal to order an EMG in these areas when trying to diagnose MG when the problem areas are in the bulbar region?

I had an EMG to my arms/shoulers, when most of my weakness is in my legs, and the results were pretty definitive. Its not a pleasant experience so be prepared for a little discomfort. :-/

I hope this helps a little. Like I said, I am newly diagnosed so I dont claim to have *all* the answers, but I know how confusing and stressful this stage can be.

Good luck with your treatment!

Lindsay