New to the forum
 

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

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.

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

Thank you for Replying
 

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???

Hi Cathie
 

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!

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

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

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?

I just had an appointment last week and she put my meds back to where I started in November 2011 ordered another round of blood tests, next appt December 3rd where I will find out the results of that I hope it has not generalized,although I have stopped working now. Does bright sunlight ever bother you I have noticed that most particularly as a new symptom. And thanks for welcoming me and thanks for your advice it is greatly appreciated....Sarah

Yes, bright sunlight (or any sunlight) bothers my eyes. I drive with the visors down in my car all the time. It's a common symptom of MG.

Is your neuro testing for MG antibodies? If she is repeating tests that have previously shown a positive result, there is really nothing to wonder about, as once you are positive you have MG, plain and simple (barring a lab error.) If she's trying to gauge the severity of the MG by the antibody level, then that will not get her far as the levels have little to nothing to do with disease severity, especially if you are on meds.

If you are having weakness or fatigue easily in any other body part--difficulty swallowing, smiling or speaking, lifting arms or using legs--then MG has likely generalized. There is no lab test that will tell you that.

I hope the meds start working fast and you can feel better again. MG flare ups are the pits! :(