Originally Posted by AnnieB3

Mike, Your DV goes away with one eye closed, right? I hope the Pred continues to make you feel better. Please think about adding calcium/vitamin D and flax or fish oil to your routine.

Debra, I was actually worried when you posted about how you are doing. Are you overdoing things, now that you are on a lot of meds? Meds only go so far, you still have to be sensible!

Abby, I think we all underestimate even what having one weak muscle can do to get us off balance. All it takes is one muscle to be weak to throw our eye focus off and create double vision. I have a bad ankle and when it gets weaker, I trip on air from "foot drop." It's easy to "pooh-pooh" our own muscle weakness, and ignore it, because we want to much to be normal. Then we are so surprised when we can't stand or walk or whatever.

Rachel, MG muscle weakness is not predictable, even on meds. I often get "2nd day payback," where my muscles are even weaker than right after going out. The most important thing is to pay attention to all those clues, like the ones Abby and Debra spoke about.

The "sub-topic" of muscle cramping or spasming is important too. Yes, when MG antibodies attack our neuromuscular junction and we don't get enough acetylcholine, our muscles get weak. So many neuros, including my current one, refuse to acknowledge that cramping and spasming are a result of that weakness. They insist it has to be an electrolyte problem or something else. You can overuse your muscles more quickly than most and the end result is the same: Weaker muscles that can cramp up. I don't know why they are so obstinate about this.

After my crisis in 2005, I had an appt. to go see my internist. I was holding a mirror in my left hand while putting some makeup on. It contorted up so badly I thought I might be having a stroke. It was my first crisis and so I had no idea how bad every single muscle can get after that. Even the smallest use can send them into cramping and spasming.

Can you tell I'm in a bad mood?

Thanks for the input, you guys.

Annie

Originally Posted by DesertFlower

Mike, I wanted to add that too much Mestinon can cause weakness, for me this weakness feels different from regular MG weakness. I had severe double vision from MG for about 5 months, it finally went away when I decreased my Mestinon dose.

My neuro did say that Mestinon can help with double vision but it often takes at least 6 months.

If your neuro approves it, maybe you can adjust your Mestinon to see what works best for you. I can only take 30 mg at a time. Taking a full pill (60 mg) of Mestinon causes double vision for me (and other problems).

I hope this helps.