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

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?

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,
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