curious "newbie"
 

Hi to all, I am not sure where to start. I went through alot of what everyoen has posted ... long time getting diagnosed. I was finally diagnosed back in April this year. WHEW I was prescribed 60mg of Mestinon 3 times per day. I was elated to the effect it had on my sysmptoms ... AT FIRST! I have a few of the side effects (totally acceptable for the relief it gives) Now I have alot of the sysmptoms returning anyway. My weakness was returning more rapidly and my double vision seemed to never quite go away completely. I have increased (on my own) to a pill every 4 hours. It seemed to help but within a month the symptoms are returning. Doc says we will adjust accordingly but I am curious if any of you can shed a little light on this for me. "WE" seem to have more common knowledge regarding all these little things. I am adjusting to not being as active as I was but I fear that my activity level will continue to decrease. Is this normal too? I was an avid golfer / tournamnet softball player / back packer / etc etc ... seems I can't do any of these now ... double vision has affected hand-eye coordination with some and weakness has affected all ... I have read about the time release ad the syrup ... any of you have advice on certain "cocktail" of these?? Any help would be greatly appreciated. THANKS

Hi and Welcome!!

I have not had double vision and only take Mestinon. But from many others here, I have read that sometimes it can get to the point where Mestinon is not enough.

Have you had a CT scan or are they talking about scheduling one? Some folks have a thymoma that can be the 'root' cause of their MG.

Have you and doc talked about more aggressive treatments (like pred or cellcept or IVIG)? There are options - and each comes with its pros and cons.

I'll bet lots of folks who have experience with double vision will share their experience. Some go with rest and Mestinon - others with IVIG, etc. It can be confusing - but at least there are options.

Sue

I wanted to add that a full pill (60 mg) at a time gives me double vision and so I generally take 30 mg every 4 hours during the day.

I had double vision with MG that did not go away until I had taken Mestinon for 5 months. According to my doctor, and me from experience, there are benefits from taking Mestinon long term such as a reduction in double vision.

Sometimes I take 30 mg Mestinon every 3 hrs when my symptoms get bad. And when the MG isn't too bad, I take 15 mg every 4 hrs.

Too much Mestinon can make me just as weak as not enough, so I suggest trying out different dosages and times between pills to see what works for you. Of course, talk to your doctor so that you have limits. My doctor has given me the ok to take any amount between 15 mg and 120 mg per day at whatever times work best for me.

I try to take a steady dose every day, but sometime I have to adjust it when my symptoms increase or decrease.

I hope this helps.

Hi, K9ja. I take the same amount of Mestinon as you. I used to take 5 a day. I do not experience double vision. But I am with you on the not being active part. It is so depressing. I was diagnosed 2 years ago and have put on 20 pounds and I don't take prednisone.
I was a high school coach and very active, now I have no energy. After a short shopping trip, I need a nap. I never used to nap.

I actually was having the same problems with hand eye coordination while i was playin sports as well. i know that when i go off my prednizone the dbl vision comes back so i kinda stick to it and it doesnt bother me.