Hi, and welcome. I have some partial answers to some of your questions.
Mestinon: Many people with MG respond to it, but some don't. If you're going to respond, you should notice a response in 20 to 45 minutes. Mestinon typically wears off in 3 to 6 hours. 30mg is a smallish dose. 60 is typical. But be aware that too much Mestinon can make you weak, too. When I take too much Mestinon I get little muscle twitches. If your neuro says you can take 60, it's worth trying. If 60 works but wears off too fast, then most doctors will advise you to take the doses closer together instead of taking higher doses.
Up and Down: Yes, it's very
typical of MG to vary by the hour, by the day, by the week and by the month. But try journaling: write down everything you can think of that could be affecting your muscle strength, and how you felt that day. I thought I was paying attention, but when I started writing things down I discovered that the relationship between how I feel and how much I've been doing in the past few days is much stronger than I'd realized.
EMG: I think what you're describing is a single fiber EMG (SFEMG). My neurologists also told me that it doesn't matter if the muscle they test isn't weak, though I'm not quite sure I believe it. But I was diagnosed (after my first two SFEMGs were inconclusive) by a SFEMG on my face, even though I was having no symptoms there. But I'm not sure why you need a SFEMG, since my understanding is that a positive antibody test plus symptoms is already a conclusive diagnosis.
A couple more things. First, a warning. MG symptoms can come on suddenly. If you get a lot worse, or if you can't swallow or have serious trouble breathing, consider it a medical emergency. Go to the ER, call an ambulance. Second, if the Mestinon doesn't do much for you, there are many other treatments available.
Originally Posted by zalue
I'm a 40 year old male newly diagnosed with MG. I have been having dysphagia, hoarseness, and issues with breathing upon exertion or talking for a few months. Many tests performed (barium swallow, stress test, etc.) and all were negative.
My neurologist (I have seen him for 6 years for idiopathic peripheral neuropathy) ran some blood work, and I was abnormal on my acetylcholine receptor antibody. My score was 0.7 on the binding test. He made a fairly firm diagnosis of MG based upon my symptoms and this serum antibody test. He ordered a chest CT scan and EMG of both arm and legs. He gave me a script for generic Mestinon which I started yesterday.
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.
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?
3. If for some reason the Mestinon does not work, what then? Does that still mean I have MG? My doctor said the antibody number is more qualitative, and that higher quantitative numbers don't necessarily mean a more severe version of MG.
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?
5. I like my neurologist. He's very smart. However, MG is not one of his specialty areas. I live in Cincinnati and I've heard of the MDA Clinic at the University of Cincinnati. Would I be better served going there? For those of you who have been to one of these MDA Clinics, what can I expect?
Thank you so much...!