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

Annie, thanks for the clarification. Thanks, too, for explaining "binocular double vision" (though I'm a bit confused--is it possible to have double vision through one eye?). When I have double vision, I can feel a pulling sensation in the affected eye, and I only see double when I move my eyes in a certain direction. I have been guessing that what's happening is that a weakened muscle in one eye is stopping that eye from following the other--they're supposed to move in sync.

Before I get double vision, my eye feels achey, and if I rest it, the double vision doesn't develop. I also find that putting something cold on my eyes helps.

Abby

Abby, Yes, the "other kind" of double vision is monocular, which does not go away if you close one eye.

There are a lot of muscles in and around the eye. When they get weak, they change the "focus" of the eyes. I was lucky to have gone to a neuro-ophthalmologist who explained a lot of this to me. I didn't know I had DV. He did a few tests where two horizontal (and vertical at one point) lines that were parallel and perfectly aligned weren't when I looked at them. Objects look "uneven" when the muscles of your eyes are weak and don't focus well. He also had me look at only one object. It was a pretty freaky experience. I thought my astigmatism was causing the blurry vision I had.

Like this.

_____
bbb_____

I had to put some letters before the line to make it work! Ignore the letters.

After I go out and do anything, my entire face droops and I can feel it. Think of muscles on a spectrum from strong to paralyzed. Have you ever had an arm go numb while sleeping? MG isn't about nerve sensations but that feeling of "heaviness" is pretty much the same, just different causes. That's why some people, even doctors, confuse MS and MG.

Yes, cold helps but just not too cold or you can get cold-induced injury to your nerves. Something else a doctor told me.

All sounds like MG, Abby!

Annie

Thanks to everyone for your responses. They all really do help!

Annie, in reponse to several of your questions:
Yes, I do have binocular double vision. It always disappears when I close one eye.

I've had antibody tests drawn several times. One of them was a binding. I also had MUSK test done as well. The SFEMG that I had was done shortly after my symptoms started 7 years ago. At that time I was seeing a neuro ophthalmologist. Before I had the tests he said he was quite sure that I had MG--after the tests were negative, he headed in a different direction.

That's why I was quite surprised that the pursuit of a MG diagnosis resurfaced recently. Interestingly, I've been dealing with an increase in double vision since I had surgery a little over a year ago.

I don't know if my current neurologist is an MG expert. Over the years, I haven't stuck with 1 neuro (mostly out of frustration and feeling like I wasn't being listened to). I did check and this neuro does see others with MG. The ophthalmologist who saw me recently for the concerns with an increase in my double vision recommended this neuro.

BTW, your visual description of double vision looks very similar to what I see, except sometimes one of the lines is slanted.

Again, thanks all for your support. And, yes...not knowing is the hardest part.

Cate

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.