I was diagnosed about 1.5 years ago. The Neuro Op started me on Mestinon gradually to help my body adjust. I think it was 30mg for a few days or weeks I forgot and then 60 3 times a day. My symptoms went away for months and this past January I had begun to have speech issues. I find that anytime I am upset or sick my symptoms increase. The doctors have told me to expect variations. I take 60mg 3 times a day unless I am at a social event and I have been told to go up to 90mg which I sometimes do once or twice a day but never in less than 4 hours.
I could only drive short distances with a patch when I was diagnosed and my eyes were horrible with night light and most of that is resolved. I have not had to use a patch (yet.)
Hang in there.
Karen

Hi, LeeMac. How are you?

MG experts are very quick to point out that the only thing predictable about MG is its unpredictability. However, after a time, MG patients can usually tell what their specific variability is. But don't be fooled by that. MG weakness can come one so slowly that even people who have had the disease a long time can be surprised by it.

If someone is right-handed and they use their right arm a lot, for example, those muscles will become weaker. The rest of the body might not be.

If a lot of muscle groups are used (we have 640 skeletal muscles that can be affected), an MGer will have generalized weakness. Socializing uses a lot of muscles, especially breathing (chest wall) and speaking (bulbar) muscles. I have a hard time doing that at all, or for very long. Now, this isn't the same for all MGers, but I tend to wake up choking or unable to breathe well after doing that during the day.

Alternating rest with activity will help keep MG on an even keel and not on a roller coaster ride. Recovering from being slightly weak is far easier than being super weak. The recovery time is also longer the more weak one becomes.

If someone has a MG crisis, the recovery period (after more drugs) is even longer. It took me over a month to recover enough to walk well when I had mine in 2005.

The important thing is to get to know how your body does with an activity. Do one activity, and then note the patterns. Do you become weak right away? Hours later? Does the weakness continue into the next day or two? Again, the longer the time to recover, the more one needs to rest. I tend to see effects of an activity up to two days later. But that's me, and others might be different, especially depending upon what drugs they are on.

Of course, if you add lack of sleep, heat, stress, infection, certain drugs, or other stressors into the equation, MG becomes worse even if you're just sitting around!

There is no perfect algorithm for MG. I think that is the most frustrating aspect of the disease. Knowing what we can do from hour to hour, day to day, is almost impossible—unless someone's MG is well-controlled with medications.

I hope you can find your "normal" and live well with any changes!

Annie