[ujukmg]

Originally Posted by 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?

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

[4-eyes]

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!

[ujukmg]

Originally Posted by 4-eyes

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!

Thank you 4-eyes. Quick question, do you stick to any particular diet and if so, are there any foods that you find help atall? I have a high protein diet and try to eat close to taking my meds, small and often all day. How about you? Also had a very stressful nervy day yesterday and seem to be suffering a lot today....

[4-eyes]

Originally Posted by ujukmg

Thank you 4-eyes. Quick question, do you stick to any particular diet and if so, are there any foods that you find help atall? I have a high protein diet and try to eat close to taking my meds, small and often all day. How about you? Also had a very stressful nervy day yesterday and seem to be suffering a lot today....

I am a vegetarian, try to eat organic and drink raw milk from grass fed cows and eat eggs from free range pet chickens. Other than that I do nothing unusual. I've noticed no foods that affect me one way or another other than caffeine, which makes the MG feel better, but the rest of me feel awful!

[pingpongman]

Stress is bad, coffee is good.
Mike