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.

[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

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.

I'm a Gulf Vet. I retired from the Reserves last year after 41 years to the day from the day I enlisted to retirement. 4-5 months before retirement I was diagnosed with MG. It's gotten steadily worse and I am now on Mestinon (which was issued to us to carry in our gas masks in the Gulf, called pyridostigmine bromide) as well as Cellcept. It looks like it has caused central sleep apnea, causing me to now wear a bi-pap mask to sleep. I called Gulf Vets Health Hotline and asked them how many cases of MG are being reported among Gulf Vets. They told me 1 in 100. That is alarming when compared to frequency rates in normal population which I believe runs about 1 in 8000 to 10000 people. MG is a presumptive condition with the VA which means if you have the DD 214, they presume the condition is service-connected.

All,

The 10 mg Prednisone per day has brought my eye lid back to normal and the double vision is getting better. I still take Mestinon 60 mg three times a day along with 500 mg of Cellcept twice a day. I have been on Prednisone for two weeks and the Mestinon for two months (which did not help, alone). Go back to my Doc this Wednesday. So far I have no side effects from any of the medicine.

I did not know young people like Erin and others got sick until they reached my age. I have never been sick after the “child hood diseases that we all received”. Never missed a day’s work during my career and I have not had a headache, yet. Hope all of you get well soon.

Motorcycles: Retired from riding , still give all the “motorcycle wave” as the past by. My son wants me to get another one as I am in a great riding area . If you ever get to Birmingham, Alabama go to Barber’s Museum. They have over 1000 old motors that run, on display.

Military: Retired from the Army Reserve after 36 years. Joined the Navy Reserve in high school then switched to the army after college to get a commission. Went to Somalia two years before the big battle.

Gardening: Master Gardner and I like plants. If you have not been to the school in your state, you should. Only problem it is hard to throw away the trimmings. You plant them instead and give away all the good looking flowers after about a year.

Hope all are getting better with medical problems. I think I am over my mad spell and looking forward to being well.

See you later,

Bull Dog
Fairhope, AL

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