Bull Dog
 

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.

Ocular MG
 

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.

Prednisone
 

[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

Prednisone
 

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.

BRAVO! Never give up! Never surrender! We will ALL have good days and bad days, but it will pass! MY hubby and son need me to be around, so I'll do whatever I have to on order to be here for them! If I have to go in and have a PICC line put in me monthly, so be it! I'll do whatever I have to to take care of them! Well put, Ctulin!
Erin:D

Feel Better
 

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

Gulf War Vet
 

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.

VA is good...
 

John,

I think for sure it is related; all the shots you take to go out of the country make many people sick. Many people have Malaria on these trips. I remember one trip taking about ten shots and made sure I got the Malaria pills when I got home. Looks like you have a good case to go on VA Benefits with the DD 214 backing you. TFL is great for us also, thank goodness, it has saved me many dollars.

I am new on the MG and probably will come down with something. They have to weaken the immune system so other medicine will work.

I wanted to stay in the reserve longer but the limits on time in grade got me, but it sure is nice to have the retirement check every month.

Bull Dog
Fairhope, AL

That is unbelievable! You actually carried Mestinon with you when you were over there? 1 in 100? Something is NOT RIGHT! I am going to asl my neuro about that.........That is truly scary! I don't know what is going on, but the stats are truly scary..........Hang in there and let us all know how you are doing:D Erin

When it comes to double vision,Most MGer's dont' get relief from Mestinon .
Prednisone will help the fastest, with in a few weeks. Other immuno suppressants such as Imuran, Cell-cept, CycloSporine..etc. will take a few months to see the difference, and it's also very common for it to take up to a good year to see full effects of those drugs.
For the most part, the meds for this disease, is not something that's a quick fix. Unfortuanately it can take a few years to really work out what cocktail of meds work best for your body.
This is why it's known as the snowflake disease, cause we're all so different and react so differently to treatments. Too many things play into it.
Best of wishes.
In the mean time, there is the prism and tape to help while you're getting situated.
Love Lizzie

Slow Bad
 

I have been on Prednisone now for two weeks and it sure helps. Doc said to be careful that the MG works in mysterious ways. I am beginning to do things I did years ago but thought old age was on the way. Like walking down the middle of steps instead of by the hand rail, squatting down, playing tennis with out the fear of being off balance. I think the disease is so slow that I have had it for maybe years and accepted the problem and the family doctor did not seem concerned until I had double vision.

Hope all goes well for you.

Bull Dog
Fairhope, AL

Prednisone
 

Thanks for the good information. I keep list of my medicine in my billfold in case of an emergency etc. I read all the possible effects Prednisone may have on people which seem to include everything bad. I take 10 mg a day now, return to the doctor in 6 weeks, and hope to cut to every other day on Prednisone. We will see. 4 ½ years??? Are we on this type medicine forever? I have read a lot on this WEB Site and it seems MG is bad for all who have it. Have noticed that a lot of young ladies, like yourself, have this.

Hope your health gets better and a normal life follows. Good luck and thanks again for any information.

Bull Dog
Fairhope, AL

One more question
 

Lizzie,

Forgot to ask why you do not like the Prednisone today and you loved it 4 ½ years ago.

I really enjoyed visiting Upper State New York while in the Army Reserve. We covered New York Units from Fort Drum for a few years. Made visits in the summer…

Bull Dog