I’m still testing my limits. Currently, it’s about 30-60 minutes per day. It is not a lot, but if I choose to day, say 2 hours, I’ll probably be down for the rest of that day, plus the next 3 days.
I saw the neurologist last week, and he placed me on prednisone in addition to the pyridostigmine. He said the pyridostigmine goes after the symptoms, where the prednisone goes after the cause.
I also go in next week for a CT scan of my chest — specifically the thymus gland. The idea there is to rule it out as the cause of the myasthenia gravis. (A tumor on the thymus gland is believed to be one of the causes of MG.)
Keeping these limits are helping. I haven’t had a really bad crash since holding to my limits. With 30-60 minutes per day I’ve decided I must prioritize my week and choose ONE activity for any given day. (I mean, how much can you do in 30-60 minutes?)
I did learn the other day having a dentist AND a doctor appointment on the same day not only exceeded my limit, but I paid for it also. I was thinking… how hard can it be to sit in the dental chair and sit in the doctor’s office? Well, evidently, too much. I suspect it was the walking from the car to the offices and back that did it. Oh, and I also stopped to get a couple of items at the store. Yeah… I overdid it that day.
It sounds like the next steps are the CT Scan, followed by 3 more weeks on the pyridostigmine and prednisone. I then go back to the doctor to talk about the results of the CT scan and discuss if more changes need to be made in my medication.
In discussion with other myasthenics, this process can take up to 3 years to get things dialed in. And then, the body is constantly changing. Some people go in to partial remission once on a steady program (and by that, I mean they feel much better, but still have to limit physical activity), while others experience a tolerance to the medications and need other changes.
Either way, it is a lifetime of learning to deal with it.
Oh, and it’s official. I now have handicap plates on my car.