I had had difficulty getting out of a chair after 3PM for over 2 years, but my workdays ended at 6pm and it would take an hour after work to gather up my things and get in my car. I was too tired to walk into the kitchen for supper. Why I put up with this so long, I can't say. But I had been noticing upper leg weakness for 2-3 summers - to dig a hole to plant in, I stopped using the shovel and had to sit on the ground and use a hand tool - even thought about being tested for MG, since my mother has it - then one day on the way home from work, there were two identical cars coming to me from the left side on the way out of my work parking lot. Everything on the left was double and merged as it came to the middle. I saw an ophthalmologist who examined me and said it must be myasthenia gravis. She ordered a few initial tests, then I saw a neurologist which agreed and I was surprised at just how easily my upper legs wilted when he tested my strength. My initial blood tests were all negative as was my EMG, but the single fiber nerve test was abnormal. Since then, one of my blood tests has become abnormal.
I tried 60mg Mestinon every 4 hours for 4 doses a day for a few weeks without improvement, then tried 1.5 tablets which didn't help either. When I went to 2 tablets every 4 hours, wow! It took a day or so and my 3 o'clock weak-legged blues went away, and my double vision was better, especially if I got enough sleep. What I traded improvement for was the frequent urgent trips to pee or poo, and I didn't always get to my destination on time. I started 'eating' Imodium, finally taking 4 alternating with 2 every morning after a shower - 20+ tablets a week, but the urgent urinating was now worse. I went thru urinal bags like crazy - very hard when you have to quit pumping gas, jump into your car and find an empty part of the parking lot to drop trou behind the wheel and squirm to pee in a public lot, much of which went actually into the urine bag. My urologist put me on Myrbetriq, which helped some after a few months. My neurologist added Robinul which also helped at the expense of a terribly dry mouth. So in order to tolerate 8 Mestinon ("Mess a Lot") tablets a day, I had to take 2 or 4 Imodium tablets, 1 myrbetriq, and 1.5 Robinul tablets in 3 doses every day. God forbid I forget an Imodium dose - two days minimum in diapers even with makeup doses of Imodium and quitting conversations to run to the bathroom. I now have a bathroom 'friend' I call Jimmah Roid, who shows himself with every missed dose of Imodium now. Taking Mestinon every 4 hours working in a medical clinic doesn't happen, but once I took one dose 2 hours late, then took the next one 2 hours afterwards to get back on schedule and enjoyed 2 good days of diapers and running to the bathroom to sit and sit and sit even with my Imodium. They could use 2 doses of 2 Mestinon tablets for a prep for a colonoscopy.
Two weeks ago, after a hamstring tendon injury one morning caused me to miss my 4 Imodium tablet dose, I hopped painfully to the bathroom 6 times a day using my cane for 2 days. I've now been on Cellcept full dose for 2-3 months, so I cut my own Mess-a-lot to 1 tablet 4 times a day yesterday. If my weakness comes back, I might choose to retire rather than take 8 tablets of medication just for side effects daily and still have to wear diapers and excuse myself with my dry mouth in the middle of conversations.
I guess I'm a miserable, fed-up kind of much-better.Read More Read Less