Mestinon for double vision
 

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.

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.

you don't have to wait (like weeks or months) for mestinon to take effect; this drugs work instantly and it should not take more than a week to feel the difference.

mestion is often ineffective with DV and ocular problems- steroids in right doses should do the trick.

best.
tom

[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.:hug: 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

I am not a doctor and I only know what happened to me, and I do think it can take time for Mestinon to help with Double Vision. I also see more and more improvements for myself after being on Mestinon steadily, not just the Double Vision improvement. My opinion is that there are some long term or long lasting benefits from Mestinon, I do think it is a slight immunosuppressant (as Annie mentioned in another post). This long term effect makes a huge difference in my quality of life. I did not have all of my current improvements after a week or even a month, or even two months, although I did get over the worst of the symptoms after a few days on Mestinon.

My doctor said that Mestinon is slow to help with Double Vision, that it helps more after you have taken a steady dose for a while and I vaguely remember him saying that it may take 6 months for the DV to go away. Of course, so many doctors seem to have different things to say about things concerning MG so who knows. My improvements may have something to do with dosage.

I want to report that I have not had double vision for quite some time and am almost ready to say that my double vision is "cured" (can't think of a better word).

I would recommend to anyone with MG to try Mestinon for at least 6 months before giving up, as long as they don't have any bad side effects. Much better than the risks of steroids or immunosuppressants (except in situations when the the benefits outweight the risks). Of course, again, I am not a doctor.

I am not trying to argue, but to point out that everyone is different.

It sounds like the Mestinon can work a bit differently for everyone. I've been on the medication for a little over a month. I'm taking 60 mg every 5-6 hours. I was seeing a small improvement in my double vision. In fact, about 10 days ago I noticed that I could actually read a magazine, without my prism glasses, with just minimal double vision. The very next day my double vision was horrible--back to where it was before I had even started the Mestinon.

It makes me wonder if my dose is too high or not enough. I don't go back to my ophthalmologist for several more weeks, then a visit to the neurologist after that. I'm anxious to see the neurologist again to talk about more long range plans. Right now I just have a "working diagnosis" of MG. I had a SFEMG done 7 years ago just when symptoms started. It was negative at that time. I'm wondering if redoing the SFEMG now might yield different results? Last antibody test was about 4-5 years ago, and MUSK was 4 years ago. All negative at the time. Can antibody tests change over time?

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

In my experience and from lots of research, Mestinon alone is usually ineffective in reducing double vision. Prednisone combined with Mestinon can be very effective. The usual course of treatment for MG caused double vision is to start with Mestinon and then add Prednisone when that doesn't work and then Immuran or CelCept if the Prednisone/Mestinon combination is not effective.

The docs are just following a protocol that begins with meds with the fewest side effects and then progressing to the more noxious ones.

Good luck with your treatment.

I was diagnosed last Dec. Now I am taking 90mgs of Mestinon every 4 hours and 30mgs of Pred. My double vision is still there, bad as ever, and both my Neuro and Opthmalogist have said it takes a while for the meds to work and to have patience.....easier said than done. LOL

I see my Neuro again in 2 weeks and he has talked about starting either CellCept or Imuran.

I started mestinon on april 23rd, 2009 for double vision and I had some bluriness.
April 30th 2009 was the last time I had double vision.
I have reduced my doses of mestinon to almost nothing now, and now I get some ivig which after the first dose, I eliminated the mestinon for a few weeks.
Im back on it, but my eyes arent seeing double, just a little weakness right now.

All,
I also have diplopia, diagnosed with myasthenia gravis last week. It's severe double vision off by 16 diopters. (1 cm over 1 meter is 1 diopter). I've been on mestinon for a week and I get to wear my 4 diopter glasses in the morning for 20 minutes and see ok, before I lose it and have to put the patch back on.

My Neuro Opto said that ocular myasthenia gravis is not seen in the blood tests about half the time. I'm extremely frustrated with my diplopia and go back in a few days. I'm hoping for my current (3 times per day mestinon at 60 .mg) to be changed, upped, or something else added.

Is this a normal beginning to finding the right medicine?

Welcome! I'm fairly new to the group and new to MG so can't offer a lot in terms of experience. There are lots of very knowledgeable, supportive people here, so hopefully others will respond.

My neuro also told me that the antibody tests are only positive in about 50% of people with ocular myasthenia. Mine were negative. In fact, all my tests were negative years ago, but I'm currently in the process of being reevaluated. Did you have other tests that were positive for myasthenia?

I completely understand your frustration with the double vision. It sounds like for some people mestinon can improve or completely alleviate the double vision, but for many others it is the first option before other drugs are added. I'm at that point as well. Steroids have been discussed but neuro would like more testing to confirm diagnosis before adding these.

I hope you have a neuro ophth follow up appt. scheduled soon and can get some answers and some relief from the diplopia.

Hugs, :hug:
Cate

I have an apt with my neuro opt in a couple weeks. My doctor has been talking to him and has treated about 15 people with myasthenia gravis and seems to know how to treat it.

The additional tests they did were thumus cat scan which was negative and antibodies were negative. But I had this same thing 15 years ago and comparing notes it was misdiagnosed back then as 4th nerve paulsy. What made him say its myasthenia gravis for sure is the ice on the eye lid test. Measured my ptosis, had me put ice on my eye lid for two minutes then measured it again. The ice helps the nerve transmit the signal to the muscle and opens up the eye lid. After a few minutes it drops down again. He said that they have done tests and the ice test is pretty conclusive.

KJ,
Interesting about your misdiagnosis of nerve palsy. My experience is similar. Initially, they were quite sure my double vision was from MG, but when tests came back negative, then said 4th nerve palsy. I've always felt that was just a default diagnosis. Now eight years later, MG is being looked at again.
I've never had the ice test done, but then I don't have much ptosis.

Good luck to you at your next appt.

Cate

DV
 

My blood tests don't show MG; however after a bad fall - about 2 months later I had DV. Once in awhile at first - now quite often. Doctor wants me to try Pyridostigmine (30 mg) 1x day. Also - an optometrist can give you glasses with prisms which correct DV. I heard Hillary has some. Not sure I want to take the medicine. Anyone have an input please.

Marqui, Pyridostigmine, is not always effective for DV. But it is fast acting and quickly out of the system... so a trial of just 1 x 30 mg, should be no concern at all. If it works, then you need to be taking it every 4 hours.

Prisms can also help with DV. However only if the DV is stable. Since you say that it comes and goes, then it may not be so much help to you. But certainly worth trying.

I began having double vision about six months ago. I saw an Ophthalmologist who diagnosed me with 6th Cranial Nerve Palsy. I had an MRI which was negative other than showing some enlargement in my right inferior rectus eye muscle. She was not inclined to preform a single fiber EMG. Many with Ocular Myasthenia Gravis are seronegative, meaning the typical lab work does not come up positive. I found a neurologist who did preform the SFEMG and put me on Mestinon 30mg. x3/day and to up to 60mg x3/day in 7 days. I am just into my second week at the upper dose and feel some improvement. The only lab work out of range are my IgM and my IgG. I see my neurologist next Thurs. He wanted me to have a CT of the chest to r/o thymus involvement; but I put that off just for now because of the expense. If he feels he cannot go forward in treating me then I will cough it up. I just think it is important to know that Ocular MG is difficult to diagnose, especially in older folks like myself. It is like putting together a 1000 piece puzzle. Even the tension test isn't 100%. I thought the SFEMG would be definitive; but it is just an important tool. I would just say to anyone here, don't stop seeking an answer for yourself. It could be a matter of life or death.

hope this helps
 

I was reading your post and thought this might be of help. My hubby started with 4 months of double vision and positive MG blood test. He was told by the neuro doc that mestinon really only works for the drooping eyelid. He had been successfully treated with CellCept for several years.. it took longer than prednisone to secure the single vision, but has less side effects. He also has weakness in the limbs, eetc.

Catie, I've been taking mestinon since 1970. Mg started for me with drooping eyelids at age 11. The mestinon has done more for my eyelids than the double vision as I've continually experienced problems with my vision for years.:mad: