Oh boy, something to look forward to. The doctor informed me that I have Ocular Myasthenia after having a few test. Woke up with double vision then the eye lids began to close or just hard to open. Started taking 1/2 pill 3 times a day of "Generic" Mestinon three weeks ago. I now take 1 pills 60MG three times a day. So far the only change for me is I can hold one eye lid open with no problem. The eye lid problem then switched sides. Still have the double vision but I am not sick in any way (so far). The doctor will call me in three days.

Has anyone had this situation etc.? How long before we get better? Do we take this medicine forever or do we get off the medicine?

Mestinon might not be effective for ocular MG…If it is the case, treatment should include prednisone and immunodepressor which should be effective within months. I stopped driving mevertheless during 2 months.
See this paper for info:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Maurice.

I was diagnosed 10 days ago with primarily occular MG although I have some involvement of my face and neck. I have probably had it for a year and a half before reaching this diagnosis. The eyelids aren't bad but eye movements (and chewing, talking) fatigue easily, especially towards the end of the day. I am still waiting for the results of antibody levels and so forth.
Mestinon helped me within the first 15 minutes of taking 1/4 of a tablet. I don't know if I am just lucky, but the neurologist thought that the positive response was pretty strong evidence that I had MG.
I am still in the learning phase of this problem as I am sure you are. There is a lot of variability between sufferers of MG and my own symptoms have varied over time. There are a lot of knowledgable people on this site who have a lot of experience. There is also a list of helpful links.

ctulin,
Thanks for the information. I am waiting on the doctor's call now. He checks with me every two weeks to adjust the medicine. So far with me it is double vision and one eye lid is hard to keep open and the eye lids changed sides last week...
Like your motor, looks like maybe a 1970 +- English bike. I rode Trumphs for many years. Also like gardening.
Bull Dog

Good of you to notice but it is my 1948 Vincent. I have four Triumphs, too. I haven't been able to ride for the last year, since it doesn't feel safe any more and it actually makes me feel worse. I used to live for riding, but now I'm thinking aout selling the bikes. Major bummer. I saw Marty Dickerson a couple of days ago who raced Vincents at Bonneville for years and was a friend of Burt Munro of World's Fastest Indian fame. He set another record last year at age 80!
I just started gardening this year but it is no substitute for blasting down the road. It is difficult to adjust to this condition. Mestinon has made it possible for me to drive a car, but I haven't come close to returning to normal yet. I hope you get better.

[Maurice,

YOU ARE RIGHT...

The doctor put me on Prednisone today 10 MG per day along with the 60 MG 3 times a day of the Mestinon. I have been on the Mestinon for a month and no change in my condition. Doc said he is doing one step at a time with as little medicine as possible to do the job. I will get a blood test every six weeks.

I looked up the Prednisone and hope the cure doesn't kill me. My eye droops and it changed from my right eye to my left eye. When I strain to hold both eyes open I have double vision.

What may be the next thing that happens? Not fun to drive with one eye.

Bull Dog

We had one Vincent in our riding group around a 1950 model "HRD" along with Matchless, AJS, Norton, Square Four, Harley, Royal Enfield, and a lot of Indians (Scouts, Warrior etc.) Harleys were not popular at that time and more complex to ride. Three of my friends raced Triumphs across the USA, the 500 CC models, they raced against the 45 Harleys and many other bikes.
(Dirt Tracks)

Anyway I was just put on Prednisone taking 10 MG a day along with my Mestinon 60 MG three times a day. With Mestinon I had no change for one month. We will see how Prednisone helps. How is your problem? Good that the Mestinon helped you.

Save your motors, you will ride again.

Bull Dog

Hopefully now you will be able to see and keep your eyes open without really trying. The Prednisone should do the trick - I know it helped me and I had really bad MG b/4 it was diagnosed. Prednisone is a necessary evil (@ least that's what my Gp told me). You should be feeling better very, very soon!I know my vision improved almost immediately, so I hope it will do the same for you!

Hang in there and let us know how you are!
Erin

Greetings fellow MG sufferers, and especially the BIKERS!!

I was just put on PB (Mesotonin), but haven't been truely diagnosed yet. The PB made a noticable difference, so I guess I have MG.

First had problems swallowing, and had many GI appointments, to include dialation of the esophogus. Then diagnosed with sleep apnea. I was starting to get weak, trouble breathing, etc. Started to rule out ALS. EMG's, blood tests. All points now to MG.

I am an avid rider - 03 HD FLHT with many miles on it. Road captain for our chapter. Got to the point I thought I was getting carple tunnel in the hands from the clutch and break levers....turns out to be MG related. Couldn't keep my left hand on the bar....been resting it lately. Skipped a 3 day road trip over the holiday weekend because of it. Not happy.

Any Gulf War vets out there??

regards,

John W.

With mestinon on board, I was able to ride around town this past weekend. There is nothing quite like it and it made me feel invigorated. I don't know if I'll be able to ride long distances again or on the dirt again, but one can hope.
I talked to Marty Dickerson (famous for racing Vincents at Bonneville, friend of Rollie Free and Burt Munro) last weekend. Last year he set a vintage record at Bonneville and rode from California to Alaska at age 80! He says with a big smile that it keeps him young and virile.
I met a man on the Al-can who didn't have the strength to lift his leg high enough to get on his H-D so he was riding a Honda Helix (fast scooter) to Alaska.
I believe that you have to do the things that give you joy. You may need to pace yourself and take rest breaks. My riding buddies have volunteered to ride with me to give me to be there if I need them. Those are good friends. There are always 3-wheelers, sidecar rigs and even the new Can-Am that would probably be safer, since they don't fall over. To give up is to surrender.