Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I experienced double vision after New Year's while on a month's vacation in Mexico (It was good: Got to see twice as many beautiful things and twice as much of my wonderful wife of 42 years). Went to my neurologist after returning, who put me on 30mg daily, ordered blood tests and referred me to a neuro-opthalmologist. I enjoyed some "Unusual Experiences" the first two days, taking the 30mg on an empty stomach; fortunately, I was home both days.
Was formally diagnosed MG 02/01/13, and the specialist recommended 30mg Mestinon 03X daily. The double vision stopped, and there were no more symptoms until early this month, when I began having difficulty swallowing solids (liquids no problem to date). Last week, the double vision returned, and I've been experiencing short (perhaps 10 to 15 minutes) episodes of double vision since.
The specialist recommended Thymectomy, but I declined: I'm 71, my thymus is normal, and at that time the symptoms were only ocular.
I'd like to hear any comments anyone may have. I'd rather not opt for surgery or Prednisone. Is increasing the dosage of Mestinon worth considering? Or what?
PS: I'm wondering about the MG Forum - had to add four words to the dictionary!
Was formally diagnosed MG 02/01/13, and the specialist recommended 30mg Mestinon 03X daily. The double vision stopped, and there were no more symptoms until early this month, when I began having difficulty swallowing solids (liquids no problem to date). Last week, the double vision returned, and I've been experiencing short (perhaps 10 to 15 minutes) episodes of double vision since.
The specialist recommended Thymectomy, but I declined: I'm 71, my thymus is normal, and at that time the symptoms were only ocular.
I'd like to hear any comments anyone may have. I'd rather not opt for surgery or Prednisone. Is increasing the dosage of Mestinon worth considering? Or what?
PS: I'm wondering about the MG Forum - had to add four words to the dictionary!
In general Mestinon works very well as long as enough muscle receptors are functional. But when most are gummed up with antibodies or not configured properly due to antibody attack, something else is needed. So although you may be better with more Mestinon, as long as the MG progresses, Mestinon will have less effect and something more will be needed.
Prednisone, IVIG, and PLEX are the fastest. Thymectomy may help, but has not been shown to be better than prednisone alone in people our age. Immunosuppressants are slower to work and you usually have to have something else to tide you over until they do, if your MG is progressing.
Sorry you have reason to join us and welcome, b.
We are a wealth of information and happy to help with anything that we can. I have been on several doses of mestinon since I was diagnosed 11 months ago. I started out at 30 mg three times a day and then increased to 45, then 60, then 75 and now I'm on 60 mg four times per day.
It might be helpful (As I have mentioned in other posts) to keep a journal of your symptoms before and after each dose of mestinon. For example, "6:00 am Woke up very weak and my jaw hurts from clenching. 9:00 am Could feel the mestinon wearing off after about 2.5 hours with increasing fatigue, ptosis and blurry vision, 12 pm ptosis improved with last dose but started again just before the next dose was due, no improvement with fatigue.....". You get the point. That will make it easier for your doc to narrow down what is and isn't working with your current treatment. It may seem like a pain in the back side but it is usually well worth the effort.
Like others have mentioned, please see your doctor immediately if you experience shortness of breath. That's nothing to fool around with.
Please keep us posted on how you are doing. Hugs to you!
Aloha,
Angie
Unfortunately for us it can take time for our docs to find the right cocktail to meet our needs. I would not hesitate to call my neuro when severe symptoms suddenly return. Consider doing the same.
Nice to meet you.
Larissa
Sounds like your MG is progressing so you need more than Mestinon.
I'm 66, diagnosed 14 months ago. Started with Mesrinon and went to prednisone to get symptoms under control.
Most docs won't do a thymectomy on older people unless thymus is abnormal---seems to be no evidence it helps.
Good luck.
I'm "E Challenged", don't do Facebook, etc. (Just bought an android, it took me 1-1/2 days to figure how to turn it off). :
Thanks for joining the group -- I agree with your thymectomy decision. If you were a young woman things would be different -- things would be a lot different, actually!
We do the whistling test to find out how we are doing -- if we can whistle, then we are doing well and when I can't whistle, then I know I need to take an extra bit of mestinon. When I first got MG I began increasing my dosage right away because I couldn't hold my head up or keep my eyes open without it. I was on 90 mg 4x daily, and then was decreased two months later when I came into the neuro sweating profusely from the mestinon.
Mestinon dosage is endlessly fascinating to us MGers -- I like to chew mine up with water (on a full stomach). But if you want to avoid the steroids you'll need to live a placid, stress-free life in a cool climate. Good luck!
~joe
I first experienced double vision late in 2009: Limited to a 30 degree arc from the right, it was a minor inconvenience, mainly while driving (Gee, how many cars are coming from the right?).
I mentioned it to my PCP during an early 2011 physical, who referred me to an Ophthalmologist. Saw him three times, he ordered the blood tests (I later learned they were positive for MG), and then told me not to worry, the condition would soon disappear. Right.
So I've definitely had MG two years, possibly as many as four years. Does anyone want to add anything to previous comments?
Again, thank you all for so graciously welcoming me to your group.
Love your sense-of- humor and enjoying seeing twice as much on your trip due to the double vision! When we have to put up with symptoms humor is a plus for sure. :) I only get double vision in the evenings or when over tired or under medicated but our daughter has prism lenses due to constant double vision.
I have not read of thymectomy's in pateints our age either. I would decline that one too. So far I have been able to treat my symptoms with mestinon alone but I am fairly new to the muscle weakness and will not project where it takes me next. I consider 30 mg. TID kind of like half a normal minimum dose. Marie
I recommend making an appointment with someone that specializes in MG. I would expect (especially if you still have trouble swallowing) that they will put you on Prednisone and Cellcept (or some other immune-suppressants). But before those will take effect - maybe months or even a year) he/she will start you IVIG treatments.
I think it is important to make that appointment early because they may not be able to see you soon and MG can hit fast.
I think MG can start with ocular but move to general in many / most people. Hopefully you (and me now) will get enough IVIG treatments to keep us safe until the suppressants kick in.
Welcome to this board and I hope it helps you. See an MG specialist ASAP.
First MG specialist I saw was at Penn, and I'm going to Hopkins for another opinion as to the viability of surgery. Both are 5-1/2 hour round trips, what a PITA.
Again, thanks to all who've taken the time to help me.
You could do imuran instead of cellcept, but I would not.
Good luck!