Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 04-05-2010, 11:29 AM #11
patleeman patleeman is offline
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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.

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Originally Posted by patleeman View Post
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.
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Old 04-05-2010, 03:52 PM #12
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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
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Old 04-05-2010, 04:12 PM #13
Kathie Glenn Kathie Glenn is offline
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[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
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Old 04-05-2010, 07:18 PM #14
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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.
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Old 04-05-2010, 11:31 PM #15
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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?
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Old 04-06-2010, 03:08 AM #16
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Quote:
Originally Posted by Kathie Glenn View Post
[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...
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Old 04-10-2010, 08:30 PM #17
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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.

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Originally Posted by patleeman View Post
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.
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Old 04-11-2010, 09:09 PM #18
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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.
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Old 04-11-2010, 11:35 PM #19
allen L allen L is offline
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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.
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Old 05-04-2010, 04:47 PM #20
kjchipmunk kjchipmunk is offline
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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?
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