Is MG painful? I find that after sitting or standing for any more than 5 or 10 minutes I feel stiff and achy until I get up and start moving around for awhile, I've chalked this off to my being a mature adult

I have also read that droopy eyelids should improve with rest, I have noticed that my droopy eye is either the same or just a hair more droopy first thing in the morning, is that normal?

I think I'm spending too much time looking in the mirror!

While on the Tensilon, I noticed a drop in pain. I'm on Mestinon and prednisone now, and until I fell Friday and developed shingles on top of it all, yes, the pain all but vanished! Even this "bursitis" in my knee from after replacement surgery had gone. 1prescription of oxycodone (small dose) lasted me for 4 months, two of them without any painkiller at all. Well, ok, except when T.S. came through. Weather sets everything off with me! Now, of course, I'm a mess again. Neuro almost won the Leg War today, which was depressing. I have been on a horse since a baby, and with "fibro", still managed to go from 20 minutes up to a 5 mile distance ride. Now I will have to start over, if I ever get stable enough to get back up.

You gotta get a nice mounting block.........

Oh, and as for getting old? I moved to Otter Road 10 years ago at age 53 and renovated one very expensive piece of property, barn and house. Much of that work was done personally, even in Florida summer heat. This past year has seen everything catch up to me, from IBS, to cataracts, to a re-diagnosis of MG and the extreme heat intolerance it brings(I'm moving to Gainesville as I get better, where summers are shorter, winters are colder and less humid, and everyone's allergies clear up.), suspected ulcers, mental breakdown over last winter. So old? Naw! It's the MG dearie! And I have yet to accept that life as I knew it may be gone. Or is it my impatience to mount up again?

Mestinon is synthetic IBS..........

Actually, I had this HUGE older Appaloosa gelding, and as a Christmas present, my best friend/sister/trainer had a huge one built for me. When I first started riding the little pony after the knee surgery, I found I could mount him by just sliding on if he stood real close. He caught on to what I wanted, and after the first mount, understood why, and forever after would only let me mount in that way. Very smart little guy.

Had the IBS long before theMG and Mestinon. Don't think it's done anything to make it worse....

That's good. It gave me IBS symptoms to start with, but I don't have that much problem with it now.

Is that like me spending too much time on the ground?<grin> @Memmsaw

Thanks for the laugh. I did get the results of my bloodwork and everything is negative. I still have the droopy eyelid which improves with the mestinon for a few hours and then gets droopy again. So for now, the working diagnosis is ocular myasthenia. I follow up with the neurologist in a month. I was told that I will continue to see the neurologist every 3 to 4 months, they told me that Ocular MG frequently advances to generalized (roughly 85% of people advance from ocular to generalized, does this sound right?)

I guess there isn't much else I can do. I will ask my neurologist about the tensilon test when I see her in January.

Feel a little like an anvil is hanging over my head and I'm just waiting for it to drop! The upcoming holidays and time with my husband, kids & grandkids will be a welcome distraction.