HI
Welcome to the group!
Good to hear you are doing well. I agree that it is hard to know when treatment makes us "normal." My own return to normal was confused with the side effects of prednisone and mestinon.
My clue was walking. When MG was first and worst, I could only walk a short distance without breathing problems. I kept walking in short distances and stopping to rest and gradually realized I no longer needed the rest periods. I was on high doses of prednisone (varying from 40 to 60/day). At the same time I found mestinon caused problems of twitchy muscles rather than helping me, and so I was better off without it.
The neuro then counseled tapering prednisone very gradually as we looked for the lowest effective dose. The first taper mg symptoms came back (walking returned to walk/rest cycles). So I stayed at 40mg for another couple of months and again could walk normally.
I was recovering from a knee replacement surgery and so my walking was in Walmart pushing a shopping cart. One day I noticed I could walk as long as I wanted to without a rest, and briskly too. That was when I figured prednisone had worked.
I was 65, taking high doses of prednisone, and my bone density test showed osteoporosis and my testosterone test (taken to find out more about the cause of osteoporosis) showed primary hypogonadism (very low testosterone due to problems in the testes aggravated by prednisone). An endocrinologist prescribed testosterone gel replacement to bring my levels to low normal and that made a great difference in my life since.
I tapered off of prednisone over the next 5 months completely without mestinon and went into what is now a 4.5 year med free remission. My energy levels and physical strength returned to normal and I am normal now.
Asking my neuro and endocrinologist whether low testosterone could trigger mg, I was told that there is no research showing that. However, both said that low testosterone can cause many other body systems to malfunction and so they would not rule it out and said that MG tends to be an older man, younger woman disease and so hormones probably do play some role in it.
So, I suggest to older men, that they have a testosterone level test as sort of a precautionary thing. I really don't know if my low testosterone was the cause of mg for me, but the replacement to low normal has made the rest of my life much better with ambition, strength and outlook on life vastly improved. As of this month I have been in remission for 4.5 years, and mostly forgotten the misery of my first 6 months of mg when I was in the hospital, and barely functioning.
Good Luck
Russ

I'm not in remission like Russ. I am on Prednisone, Mestinon and Imuran. I have had Plasmapheresis and nearly died a year ago. Still I am in a much better place now. I am going to try tapering down on Prednisone for the next 4 months(from 25 down to 20). I get frustrated every day, today my legs aren't working well and I was choking and gagging trying to eat a sandwich for lunch, I recovered. Last year I was drinking with a straw and eating my food from a blender. Last week I saw my Neuro and he told my wife that what I was doing was not going to make my disease worse, he said I was hard headed and tried to do too much but all that was doing was making me tired. I have had to back off on my home projects especially because it's summer an I don't do well in the heat. I did injure my back trying to clear the tree debris from the hurricane from the road. So by trying to do what I used to be able to do before the disease I sometimes get myself into trouble. I try to deal with it and move on. Life is good.

Thank you, both, so very much. Insight from others is quite helpful.
I, too, am "hard-headed" and do too much and it wipes me out. One comment I have received from 4 of my doctors is, "until you are intibated, you probably won't stop". How's that for stupid, on my part, cuz they are probably right.
Anyway, the frustration of this ever changing disease is often disheartening. Having support of others in the same boat is encouraging.
My triggers; Heat, Stress, extreme cold, too much activity.
My challenges; Medication perfection (yes, hilarious)
My goal; enjoy as much as I can without wiping myself out (or making my wife angry with me for not doing it right)
My hope; to learn as much as I can for the sake of coping.

Thank you!!!!
Jeff

Cool Jeff. I am hoping that we will have cooler weather next week, I'm tired of the 90's! I don't really have problems with the cold but then again I don't really live in a "cold" climate. I asked my Dr. for more Mestinon so he is going to let me have 5 a day, I don't sleep much and going 12 hours with no medication was making me weary, I am hoping to regain some muscle control. Without having good muscle control I think this has contributed to some of my injuries, nothing real bad, I have had to wear a back brace once in a while. I do sim racing on the computer, mostly I drive with my right hand/arm because my left hand/arm doesn't work all that well. This is what my wife was so concerned about and thankfully my Dr. addressed this so I'll continue in my hard headed ways while I can. One of the things I don't understand about this disease is that if my muscles don't work how come they hurt so much? Also the weird cramps I get, my wife and I laugh at the strange positions my toes work themselves into. Every time I go to light the stove my hand(thumb and forefinger) seize up in a painful cramp. I told her I needed a new stove, she just laughed. Wednesday is senior shopping day around here. Most of the time I am more mobile than the other seniors I see, so my wife and I look at each other and say how good it is to be me even with the disease I have because I could and have been so much worse. Hopefully you will get your medications where you need them to be soon.

Take care Jeff,
Carl

I am intrigued by your comment about the painful cramps and odd positions your toes work themselves into. I have had VERY similar experiences and my neuro thinks I am nuts to equate them to my MG. I have heard similar from others about cramps and pain.
I was asked to consider disability for my job. I am from the generation that was taught that you just keep working until you can't. Some days, "can"t" is seemingly real. Mostly, though, perpetual motion can carry me to the next task.
There seems to be lots known about MG, but I am finding it to be such a different experience for so many that it seems they can't possibly understand all that we go through.
I never want sympathy. I never want to be coddled. I just want what I have to be accepted when I cannot do what I used to do. If I can't walk for a bit, I rest. I am not crippled. I am not having a stroke. If my voice is not working well because I can't push enough air from my lungs, I am not having a sore throat and a cold. I just can't talk for the moment.
I know that nobody can "see" my issue but it is real to me every day.

Life IS good and I am thankful for the attitudes my grandfathers taught me about pushing onward. I will be alright, just frustrated, mad, sad, hurt and incapable, once in awhile.

Thanks,
Jeff

Actually I say my husband gets "trigger"fingers as they cramp up like that and I get " trigger" toes. They never used to do that before MG. I do take at least a teaspoon of yellow hot dog mustard a day, or sweet pickle juice, and that helps so much with leg cramps. Apparently football players use both for that reason.