Quote:
Originally Posted by zalue
Hi,
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...!
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I was diagnosed in 1981, a long, long time ago. Over the years, I have taken Mestinon off and on as needed. In answer to your question, you only take it as needed. There's no need to ramp up or down. Always remember, too much Mestinon will make you feel as bad as too little so be careful. Too much makes my mouth water, nose run, stomach cramps and jittery muscles. If I haven't had much Mestinon recently (and over the years I have had long periods with little or none) I start with 15mg (1/4 tablet) every 1/2 hour until I feel better. That way I don't OD. Some neurologists are good with MG but many don't have enough experience to deal with all the issues. As you have probably noted from this site, there are MANY, MANY symptoms and everyone is different. If you are unsure about your diagnosis, a simple test your doctor can perform is a tensilon test.
I agree with one of the other posts in answer to your questions. Watch out for heat and humidity. It can be devastating. Extreme cold can have the same effect. I live in Florida and the summers are terrible. I start warning people that from June through September, I will not feel well. I also have the hoarseness - I actually lose my voice completely. I have trouble holding things in my hands. My arms and legs get weak, especially the left side. I feel like a giant is pushing down on my chest. If I read too much or look up, down or sideways too long (like laying in bed watching TV - you're not looking at the TV straight on), my eyes feel weak and my vision gets blurry. I seem to pull muscles very easily. I am at the maximum dosage my doctor feels is safe (Mestinon 6 - 60 mg per day, Timespan 180 mg at night, Imuran 4 - 50 mg per day). I just started IVIG but ended up to Aseptic Meningitis. I used to take Predinosone but I don't tolerate it well. Otherwise, I'm perfectly healthy
