[ujukmg]

Hello anyone out there who has lived with this for over two years and why does this disease have a mind of its own?

[4-eyes]

I will be having my 15th "anniversary" next week. MG is nothing if not unpredictable.

Do you have anything specific you'd like to discuss? There are a lot of veterans on here with lots of helpful advice and support. Feel free to join us.

[cait24]

welcome to the group. Sorry you are having a rough time. What is bothering you the most right now. I have been on steroids for 6 month and my symptoms have stabilized. But even at a stable level, living with MG can be very difficult.

kathie

[ujukmg]

Originally Posted by cait24

welcome to the group. Sorry you are having a rough time. What is bothering you the most right now. I have been on steroids for 6 month and my symptoms have stabilized. But even at a stable level, living with MG can be very difficult.

kathie

Just the fact that this MG is so up and down one minute you are ok and then you are not. Two years ago after two months it was under control and now it seems to be back full force!

[ujukmg]

Originally Posted by 4-eyes

I will be having my 15th "anniversary" next week. MG is nothing if not unpredictable.

Do you have anything specific you'd like to discuss? There are a lot of veterans on here with lots of helpful advice and support. Feel free to join us.

Hi there thanks for replying. I have occular MG. Specifically I am 49 and look physically fit but don't feel it! worked up to May because my MG seemed to be in remission. I went on an exhausting trip to France about a month ago and I feel I am back to square one (i.e can only open my eyes about ten minutes at a time) and as a result have applied for permanent disability. My meds go up and down like yoyo's and so does my fatigue. Other than prednisone and mestonin do you have any advice???

[Stellatum]

Originally Posted by ujukmg

Other than prednisone and mestonin do you have any advice???

There are other long-term immunosuppressant drugs you could try, like Imuran or CellCept. You also might be a good candidate for IVIg (transfusions). You symptoms sound severe. I hope you will ask your neurologist about other treatments.

Abby

[ujukmg]

Thanks Abby I am on Imuran have never heard of Cellcept how is that different from the other three?

[4-eyes]

If you are having exhaustion and fatigue, it would seem to me that you are no longer "just" ocular and have instead gone to generalized MG. Most who start with a diagnosis of ocular MG do generalize, usually within the first 2 years. When is your next neuro appt?

[ujukmg]

Originally Posted by ujukmg

Thanks Abby I am on Imuran have never heard of Cellcept how is that different from the other three?

Hey Abby do you ever chat with other members as symptons are bothering you?