I work 84hrs/ week then I get 7 days off. Coming to the end of my working week I'm pretty sure I'm going to die or go into a crisis but then I relax for a week feel invincible and go back to work again. Hope springs eternal:)

Several weeks ago I went scampering around the neighborhood after a missing pup. It was the furthest I've been in months. I saved the pup. But the next day my "bad" leg went numb and then I had some of the most intense pain I've ever felt. It took a week for the pain to go from constant to periodic. It's been gone more or less totally this week.

Believe me, I'm not gong to go that far over the line again.

Take care,

Marty

I pushed myself, past the MG limits - 4 times.
I ended up, in the back of an ER wagon - 4 times.
I thought I was checking out - 4 times.
I was days, in the hospital - 4 times.

I don't ''overdo things'' - anymore.

I finally got a full, correct, and complete diagnosis, 2 & 1/2 years ago.
Found out: I had a total of 3 neurological problems, including MG.

I was started on a correct regime of meds, which works moderately well.
I don't overdo things.
I break jobs, into easy, 20-minute segments (max!)
One easy, 20-minute segment, a day.

I haven't been in the back of an ER wagon.
Or required a hospital stay.
In 2 & 1/2/ years.

I used my arm too much once doing dishes and cooking for family gathering. It was numb for a week. But it didn't start getting numb till that evening. Taught me
BUY PAPER PLATES
ha
Ann

I do it all the time. I pay. I get exhausted and need sleep. I've never heard complaints of numbness or pain, as expressed by Ann and Marty. Pain and numbness aren't a part of MG. They may be part of neuropathy, which I'm told is common among MG-ers.

Curt

My little rant, above? Was for the benefit of MG newbies.
It's important to know? If you challenge MG - to a duel?
MG will eventually knock you flat, every time.

Maybe you can stay in the game, a lot longer than I can.
Just don't push your luck. (Yes - there are some MG patients, who receive effective treatment, and can lead productive lives. Then - there's the rest of us.)

MG is a brick wall. You cannot smash through it, with muscle or physical effort.
You have to go around - the brick wall.
With medicine. And with personalized treatment (many kinds).
You beat MG - by adapting your life.
You beat MG - by using your brain - not your brawn.

People who have had MG, for many years?
And have been correctly diagnosed, and receive helpful treatments?
These people - already know their limits.

Everybody's MG is different, that's becoming more clear, all the time.
Many, many variations.
Some people - can handle much more, than I can.
Other people - are in rough shape, maybe even hospitalized today.
(Even some we know, from this support group.)

Curt mentioned something important.
There are other neurological problems, that often accompany MG.
That's a double-whammy.
If that - is your situation? You're getting into a game, where you're facing - more than one opponent - and you may not know it.

I am sorry to sound so severe. It's not my nature.
It will surprise some of you - who know my lighter side.
I just don't want to see?
Someone suffer, unnecessarily!

I asked the question because of 2 reasons. 1. I want to do as much as I can. 2. I don't want to push so hard that I really hurt myself or others by my inability to function while driving or helping care for a child etc.

I know everyone is different. I guess I was just hoping that there were maybe some common symptoms that I could possibly be on the look out for. Maybe I am stupid or stubborn or a bit of both but I just can't start at the bottom of my limitations and work up. I have to keep going but I don't want to be completely stupid about it and ensure that I fail. In order to be the best that I can I have to be as positive as possible and believe that I can.

Be very careful in your push. I have been having an extreme flare-up because I was "feeling good" and thought treading water for an hour for the 2nd time that week was great idea. Lesson learned. Increase activity in small daily increments...

When someone is active and full of life? And then, they become sick - with some crappy, chronic disease? A disease, nobody's ever heard of? A disease, where doctors - understand the neurological symptoms. But they don't understand much, about the cause of the disease. It's really, really tough.

Our culture teaches us: you can achieve anything. If you only work harder. Or use more effort. You can conquer anything.
It's true - that does often work - with many things in life.
It is not true - and it does not work - with a serious, chronic disease.
If you try that approach, with MG? Well, you already know the results.

I understand the need to think positive! - and have personal drive. I was a busy, self-employed carpenter - and could work like a bull. Until one hot August day, almost 10 years ago. Over the course of several hours? I slowly became paralyzed, and had great difficulty breathing. (Cue the sirens.)
I had been diagnosed, with ocular MG. But I had also been told - that's it. That's all I had. Wrong. Among dozens of wrongs, to come yet.

I have an old friend, who has MS. The prettiest, most vivacious woman - you would ever meet. She raged against MS, for years. Damaging herself, and her family.
She finally got some wisdom (religion somehow. sorry I don't know more than that). I asked her, this summer: why she was doing so much better, these days? She replied: Oh, I learned - that any neurological disease - is best handled, through medicine and energy-management.
Well, that's an odd-mix, I said.
''Personal'' energy-management, she said - laughing & smacking me on the shoulder (Is this ''spoons''?) She said: I sat down and prioritized the use of my daily energy. I save my energy - for the things I need to do. And I also save my energy, for the things - that I like to do. Nobody is perfect, she said - at figuring out the right combination. It's a learning-curve.

The next sentence is gonna surprise you. I'm a very positive individual. I get comments like that, all the time. People always say to me: how can you be so positive, with what you have to face everyday? I guess it's because I have developed a system, for dealing with MG.
In some way, that I don't fully understand? I have made peace with the disease. I have found - I can LIVE - with the disease. Yes - MG sets out boundaries, for me. Boundaries that I can't go beyond.
But within those boundaries. I am king of the world! (cue Titanic movie music.)
I'm full of fun and good humor. My grandchildren love to come visit. We do so much, and have so much fun!
I'm not some old fuddy-duddy, sitting in a wheelchair, brooding over my life. We go to Florida and theme-park-palooza, every year: bombing around - on an electric wheelchair, scoping out the next hour of fun (wheelchair = energy-management). We go camping, and 4-wheeling, and travel all over creation. We spend every summer weekend at camp, laughing & swimming & boating & BBQ-ing. Winters, we go sliding on the biggest little hill, you ever saw. And my friends & neighbors see us more now! Than we ever did in the past!

Work. This was a problem. I had to retire, and go on disability. That's what is different, for younger families today - with such high costs of living. I was near retirement, had low monthly-bills, and excellent insurance. That's a combination, hard to come by, these days.
It's true - because of MG, we aren't rich. But we do have a lot of fun.

I rent an electric wheelchair, when the fun? Requires distances to be covered. I can walk a quarter-mile, with several rests. My life isn't over! I'm having more fun now - than at any point in my entire life. But it took me years & years of sickness, and years and years of mentally sorting things out - to get to this point.
You would not have wanted to know me, from 2003 to 2008. I had to figure all this out - in isolation. Because I had never met another MG person, until this summer of 2011. Now I've met two people! And I'm meeting all of you, here on this support group. Thank you! The encouragement, that I find here? It's one of the greatest things to happen to me, in this whole MG business.
Please understand: I'm not trying to discourage - anyone. Or rain on your parade.
I'm trying to help you. To encourage you!
Personal-Energy-Management! (Be Green - about Yourself!)

To me Ross, you are a success story. The reason I say that is because you are living life to the fullest it can be now even with MG. Good for you!

Ahhh... The GOLDEN BALANCE we are searching for!

"1. I want to do as much as I can. 2. I don't want to push so hard that I really hurt myself or others by my inability to function while driving or helping care for a child etc."

That is exactly it! Balance Balance Balance! (Sometimes the weights shift and you re-balance). ;)
This is the game I believe. Doing as much as we can and not overdoing things... I have heard this knowledge comes from experience and learning to listen to your body's signals and signs. This can be our greatest challenge though, as many of us have been plowing through life not listening to our bodies much at all. A lot of A type personalities here!
Love, Becca

Snowbeltfolie wrote (in part): "You beat MG - by using your brain - not your brawn."

Truer words have never been spoken.

If you follow this simple statement, you will eliminate 99 percent of the problem. You can then work your way into recovery.

Curt

I am new to this group. I used to clean houses for a living. I had my own small client base and I worked by myself for myself. I did love my job because normally I tend to be hyper and full of energy. In the past few years I noticed the weakness in my legs and arms. In the past 6 months I had the slurred speech, swallow issues and sometimes after work I was just too tired to breath or talk. After going into a crisis and ending up in hospital, I tried to go back to work because we live pay check to paycheck. I quickly found out the hard way, going back to a job of such physical activity was not going to work for me anymore.
I just listen to my body now. I dont leave the house if I have that overwhelming feeling of exhaustion that comes on. I rest alot!! I text and computer chat with friends to save my voice for my kids. It is an adjustment but I figure there are people worse off than me in the world. I read on one of these forums or groups someone say "do what is neccesary first, then do what is possible, after a while you will be doing the impossible." I hope I got that saying right! lol! Yes it is a balancing act and I have had to change my priorities, but at least I am not alone. Thank you to everyone on this group. I am happy to find a group of people who actually understand what I am going through.

Oh yes, did not realize how badly pushing oneself would cause MG problems... I crazyly stood in line Thursday night to get a laptop did not get to bed until 12:30am then got up at 5 so I could get ready for work... all day my eye kept shutting, choking, wobble walk was worse, voice went a few times.. ugggggg I am sure I was such a sight...

Annette

The best help, besides what I just read, was when a Dr, told a group that MG tired is different than regular tired. With normal tiredness you kind of slowly go downhill but with MG tired it's like you fell off a cliff. When our muscles/nerve connection starts to fail it has a tendency to collapse. And since some of the muscles involved are critical to life (lung function specifically) it would be dangerous to stress yourself intentionally.
With this disease you probably can live well and long if you tread cautiously.