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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Howdy and welcome to the group
I came down with my MG symptoms around 40 too (Thymectomy on my 40th birthday weeee!)
1. You're taking too little. My neuro started me on a full tablet every 4 when I first started Mestinon treatment and has periodically tried bumping the dosage. You will want to take a full tablet every 4 to 6 hours during your trial to determine if it is working for you at all. You should feel the difference in ~30 minutes of eating the pill.
2. Yes. Depending on what you do, physical and emotional stress your symptoms will wax and wane. The really freaky thing is when the weather makes significant changes to your day to day abilities - watch the heat... it can be nasty.
3. If Mestinon does not work, your neuro will start to look at immuno-suppressants such as Prednisone, Celcept etc. I am lucky in that I never needed any steroids to suppress my immune system to control the MG. There are shorter term options (IVIG, Plasmapheresis etc.) but they tend to be reserved for clearing up serious "down time"
4. yeah, the emg will typically hit all muscle systems to locate issues; it is unusual that they'd not test your facial muscles as well if you're experiencing bulbar issues...
5. I have a generalist for my neuro too. There is no harm in seeing a specialist to get specific answers (I've gone to a specialist). The most important thing is that you trust your Neuro and medical team to get your condition under the best control possible. I'm actually in a situation where my primary care is done by discussion between me and my primary care GP. With my GP's help, I adjust my meds based on my own needs but I'm a few years into this now (and have learned my way around the system...).
Best of luck and welcome again. Don't be shy about asking questions.
Brian.