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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-15-2009, 10:22 AM | #1 | |||
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Member
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My double vision is back!
I stopped taking my Prednisone (per doctor's schedule) on October 15. Was currently on 30mg of Mestinon x 3 daily and was doing great until yesterday. Oddly enough I was at our local MG support meeting when I noticed my double vision returning. Could barely make it home driving and had to keep my right eye closed. I immediately took a full tablet (60mg) of Mestinon and rested my eyes. It eventually got better and I took 60mg again about 11:00 pm. But this morning it's back. I originally started out taking 60mg x 3 when I was first diagnosed this past July along with 40mg of Prednisone. My neuro reduced the Mestinon dosage on September 23. I really don't want to start back on the Prednisone if I don't have to. I cannot believe it is back just when we're getting ready to go away next week on vacation. My husband is going to think I don't want to go away with him. My symptoms first manifested back in July one week before we were scheduled for a 2 week cruise! Guess I'll have to call the neuro tomorrow. |
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11-15-2009, 11:52 AM | #2 | ||
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Grand Magnate
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Kathy, I'm sorry. Are you having a return of worse MG symptoms too? I know that for some people, the DV only gets better on Pred. Can you leave the driving up to your husband on vacation and actually rest while gone?
Some people see double vision as a nuisance they can live with (except when it makes you unable to drive!). But it can also be a sign that your MG is getting worse. You've already answered your own question: Call your neuro! Annie |
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11-15-2009, 12:26 PM | #3 | |||
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My MG is only ocular so far (crossing fingers). My double vision is so bad that I can only drive safely for a very short distance in the neighborhood. I couldn't even pull the car into the garage this morning after church without thinking I was going to run into the sides. No way will I go out on the expressway! |
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11-15-2009, 03:02 PM | #4 | ||
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Member
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Hey Kathy,
Sorry to hear your double vision is back. Maybe your neuro will just increase your mestinon so you don't have to go back on pred. Is there any chance the DV returned because you recently stopped the pred? If that is the case, I would imagine it would eventully go away in time. I remember well when I had the DV everyday for well over a year. I drove very few miles during that time and I was like a hermit. Then it just started getting better one day at a time and I was able to decrease my mestinon over time as well. I hope you are still able to go on vacation. Take care. Hugs, Pat |
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11-15-2009, 04:19 PM | #5 | |||
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We're going on vacation come hell or high water! We're driving from Cincinnati to Hilton Head. I feel fine, but if the DV doesn't go away, hubby will be driving all the way. Usually we trade off in 3-4 hour shifts. I've been off the pred for a month now. Maybe the ACR antibodies have gotten back to a high enough level to trigger the DV. I don't know how you dealt with the DV for a whole year. Does anyone believe that Mestinon alone helps with double vision? |
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11-15-2009, 04:27 PM | #6 | |||
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Member
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Mestinon alone does help with my double vision, although it has taken a long time (4 months I think) and getting the dosage just right (too much or not enough Mestinon gives me double vision). My doctor initially told me that the Mestinon should help the double vision but that it often takes as much as 5 months. I have only taken Mestinon for my MG.
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"Thanks for this!" says: | KathyV (11-15-2009) |
11-15-2009, 04:51 PM | #7 | ||
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Junior Member
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I have occular MG - woke up with double vision one day - after seeing my neuro she recognized it right away and started me on mestinon - BUT sent me to the greatest specialist for MG in Canada because she knew that he would be the one to see for the most up to date info etc etc - He put me on pred AND imuran - weaned me off mestinon - the reason he put me on pred was because imuran can take up to a year to kick in - so he gave me the pred so I would have relief sooner.... I was on pred for 9 months (weaned off etc. etc. during that time - and a lower dose)..... I am now on just imuran and "knock on wood" all is well. Come spring he will start to bring my imuran dosage down to see if I can tolerate a lower dosage. I only carry mestinon with me in case of an emergency - I've never needed to use it so far. So, to answer your question (long story LOL) I would say with my experience NO mestinon alone didn't work for me (and I was on just it alone for 6 months) |
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