ocular MG
 

I everyone .. i am diagnosed with just ocular MG right now. I was wondering what the best treatment is? i just started mestinon today and didnt notice a change ... does mestinon have to build up in your system? when it does work does the droopy eye lids and double vision resolve? anyone else just have ocular MG?

thank you ....

Welcome to the board. You will find yourself spending a lot of time here, as you will find a wealth of advice and information.

My MG started as ocular but rapidly changed to generalized. I had double vision and a droopy right eye. I still have a droopy eye but the Mestinon helps it. For a long time I thought the Mestinon was not doing a thing until I missed a couple of doses and my right eye was almost closed. As my Neuro told me, Mestinon is like a Band-Aid, it only helps you for a short period of time (3-4 hours). You need to get on a long-term program.

Now for the tough part my double vision just got better after 12 months. I didn’t drive for 11 months because I felt it was too risky. We are now trying to figure out what helped. I have been on Imuran for 10 months and had 3 IVIG treatments. So we are not sure which helped. We stopped IVIG and waiting to see what happens. As for my strength it is a day-to-day thing and I take them one day at a time. Stress and heat seem to affect me the most.

Keep in mind what works for one person might not work for you. If you have more questions feel free to ask them, as someone here will have the same experiences. Best of luck to you.
Mike

Ocular MG
 

My initial MG symptoms were more physical problems like trouble swallowing and numbness in my extrementies. The only visual problems I noticed was that my eye movement seemed to be slow. Later in the hospital after my thymectomy, I had sudden double vision and my eyes literally locked to where I could not move them left or right. My neurologist started me on prednisone and worked up to a high dosage and that corrected the problem. For various reason (which I won't go into here) I cannot take Mestinon.

However once my eyesight was corrected, he stopped the prednisone. Several months after I was released from the hospital, I once again had the double vision and my eyes locked - and this time I had the drooping eye on my left side. For some reason, he thought IVIG treatments would solve the problem and to this day I don''t know why. I had already had four IVIG treatments to try to solve the MG illness and none helped. So after the two treatments proved no improvement, I ended up in the emergency room because for two months I had not been able to eat because the double vision made me so sick at my stomach. Well then he tried the prednisone again and guess what, it corrected the problem. Now I'm on what you would call a maintenance dosage - 25mg one day and 5mg the next. No more problems with my vision. Now I have to face the side effects of prednisone.

There is no end to the problems we suffer. Some days I feel like a guinea pig for the medical community.

Good luck in finding what will solve your vision problem.

Southern Bell
:grouphug:

Ocular
 

Hi, Welcome to the board, this board has helped me through some very difficult times, and have answered so many questions. I started with severe double vision is has been 3 years now. After 8 months I had a diagnosis, I was one of the lucky ones to get a diagnosis that early. I was put on mestinon and that did not help my double vision. The double vision just went away one day, But my left eye still droops alot and the visual problems still exist, but not bad enough to keep me from working. I guess you kind of get used to it somewhat and don't notice as much. I have had some generalized , mainly , swallowing., and cheek drooping. I was put on prednisone., which seemed to help my energy level and the drooping. AS of the past 3 months , I am not on any meds and I am doing pretty well., my neurologist feels from his experience that after a 3 year period I should not worsen my symptoms., but like he said it is a auto immune so who knows. I am thankful that I have not worsened. I sometimes think because I got it at 57 years old, that I didn't have such a severe form of it , but who knows. Stress and Heat definately are my enemies, big time. Take care any questions that I can help with please let me know. I appreciated all the help I received here.:):o

My ocular problems almost disappeared when I started taking prednisone.

Tony