Hi!
I'm in the process of being diagnosed with MG. I don't have many symptoms right now except double vision, which is really causing problems with me being able to do my job.

A recent tensilon test was inconclusive; however, neuro prescribed Mestinon and the medication seems to be improving my double vision a bit, but it certainly is not eliminating it. She told me now to take the Mestinon 3x/day, but I didn't bother to ask her how frequently I can take it. It only seems to help for 3 hours max. Can anyone share their experience with taking Mestinon for double vision. Has it helped long term?

Catie

My MG started with double vision only, but by the time I was diagnosed with MG I had lots of other symptoms.

I take only Mestinon and it helps with my double vision, although not at first, it took 5 months for it to help with the double vision. Now I rarely have problems seeing as long as I take the Mestinon regularly (and get plenty of rest).

Absolutely for me the Mestinon has helped in the long term with double vision.

I take 30 mg of Mestinon 3 times a day. I find that it lasts for about 4 hours.

Remember that too much Mestinon can make your double vision worse just as much as not enough. You may have to adjust your dose to figure out what works best for you.

I initially was taking 60 mg of Mestinon 2 times a day and although it was helping with some of my symptoms, it was not helping with the double vision and I found out it was because it was too much Mestinon (for me).

I hope this helps.

Hi, Catie, welcome to the forum. I'm also in the process of getting diagnosed, and Mestinon has helped my double vision a lot. That doesn't mean much, though--I've only been taking it a short time, and who knows what's in store for me in the future. I hope it works for you.

I just wanted to emphasize what DesertFlower said about too much Mestinon. When I tried taking it every three hours, it was too much and it made me really weak! What constitutes "too much" is different for everyone, so just be aware. Best wishes for a quick diagnosis and successful treatment.

Thanks for your responses. Knowing not to overdo it with the Mestinon is very helpful.

I'm cautiously optimistic (?) that I may finally get a diagnosis. It has been a long haul--7 years! I started out with just double vision, but then within the first 18 months had more symptoms--swallowing problems, arm and leg weakness. But most of those symptoms eventually disappeared, which was great although this made me feel as if I as imagining things. I just wish the docs could have seen me in the evenings when I felt so much worse.

Initial thoughts were MG, but all tests were negative. Then on to MS, but it didn't quite fit. Now back to MG. The docs are looking at purely ocular, but I wonder with previous symptoms. Can someone have MG even if the tests have been negative?

Catie

Catie,

Whenever I have a good spell, I wonder if I'm imagining things!

My understanding is that the antibodies that cause MG often don't show up on the tests of a patient whose MG is purely ocular. Wikipedia's Ocular Myasthenia article says "Autoantibodies against ACh receptors are detectable in 70-90% of patients with generalized MG, but only 50% in ocular myasthenia." I've read the same thing elsewhere.

Also there are at least two known antibodies that can cause MG, and there are probably more, since some MG patients don't test positive for either. Google "seronegative myasthenia gravis." In addition, there's a congenital form of MG in which there are no antibodies at all. It's called "Congenital Myasthenia Syndrome," and its symptoms are sometimes not recognized until adulthood. See http://www.mayoclinic.org/myasthenia-gravis/.

Hi, Catie. Welcome. I'm sorry you have gone through so much for so long.

If you close one eye, does the double vision go away? That's typical of MG. It's called "binocular" double vision.

These guys have given you some good info. Do you know which antibody tests they did? Have you gotten copies of all the tests? Did they do a Single Fiber EMG? Last question . . . is the neuro an MG expert?

Abby, I hope you don't mind if I add to what you said about CMS. Congenital Myasthenic Syndromes are not a form of MG. They are not autoimmune diseases but genetic mutations that cause either no acetylcholine, too little of it or too much of it. Because of this, immunosuppressants won't help. That's why it's so important to definitively diagnose what is going on before giving patients drugs. Mestinon is used for some CMS but not for the ones where someone has too much acetylcholine.

http://neuromuscular.wustl.edu/synmg.html

Mestinon doesn't last for long. It can take 30 - 60 minutes to kick in and it often only lasts at full strength for two hours. Most people take the tablets. I take the Mestinon syrup.

There's a big learning curve with MG. There are drugs that can make it worse. Being too hot or too cold can too. Stress, infections or anything else hard on the body like surgery can make it worse.

I hope you can get answers. I think that's the worst part - not knowing. Good luck.

Annie

[Catie,

Mine is purely Ocular and all my tests came back negative for MG, including blood work except for the Single Fiber EMG. They stick a needle in the muscles around the eye and you are hooked up to some machine where they can tell whether or not messages are getting through from the brain to the eye. I had already had an EEG, which showed the brain working normally. I had already had my eyes examined and the results were my eyes were healthy. So, what was causing the double vision? An MRI discounted many diseases. The SFEMG showed a weak case of it. Of course, like the dr. said, he could do the test on any given day and it could show mild to severe depending on the symtoms that day. Hope this helps. I too at times think I am imagining my legs and arms being weaker. In fact, I am going to MUSC in a couple of weeks to have the SFEMG repeated and this time in the arm as well. Take care! Kathie Glenn

hey Kathie; may I ask why you performed an EEG; i believe that this is not a rutine diagnostic in MG...

I'm in the same boat as you Catie.

I havn't been fully diagnosed with MG yet but I'm taking Mestinon (for about a week now) and havn't felt any difference. My only real symptom is the Diplopia which as you all probably know is very debilitating. I just want to see single again.

Question for those who have had double vision and are taking Mestinon:

Did it get rid of your double vision? I'm taking 60mg every four hours now (after working my way up from 15, then 30mg). I'm on the second day of taking it and have not noticed any effects. I know DesertFlower said she took it for 5 months before seeing an improvement, just wondering if it worked for others too.