I have often had something similar happen--if I have a relatively "good" day then I'm very tempted to just do a whole bunch of stuff because I actually have the strength and energy to do it, but then I pay for it the next day about 98% of the time. My pharesis doc told me that many of his patients have told him that this happens. I will add my voice to those saying they don't know how you are standing that long! You must have some good drugs or something! Good for you that you're able to do that, but as others have said you may want to be careful that you don't just completely wear yourself out and have your MG get worse. I wish you the best of luck and hope you can find a balance so that your off days are better for you.

MK

MK, this is what happens to me, too...I have good days so I do a lot of things and then I pay for it for one or two days.

Also, I find I have no choice in this matter. I work 2 days a week and then I have to rest for at least one day and sometimes two between working. I wish I didn't have to work because I don't think these ups and downs are good for MG... I want to work more, but since MG came along I just can't do it.

I know what you mean. At work, I can work my full work day, some days I am on my feet for 8 hours. I keep a smile to my face and try to be energetic....I guess I keep pushing my self? Pretending on my part?

But as soon as I get home....I feel it. The energy is gone and I feel like I ran a marathon and plus some.

I was recently diagnosed with MG, over a month ago. I am learning how to read my body's sign and how and WHEN to rest and take it easy. And to NOT push myself.

thanks for all of your inputs. I felt like I was sooo unusual, being able to stand for 8 hours.. It is good to know I am not the only one that does this. I was wondering was I misdiagnosed? I know the ENG I had (I had 2) confirmed it but it didn't seem typical. Has anyone had LEMS?What is the difference?

I used to work and stand on my feet all day and looking back - I think I had MG then. I am not dx yet but suspect I may have it. My symptoms were there all my working life and gradually I got weaker and was called lazy and not a team player. But - I did manage it then. Prob could not now though. I used to lean on the counter when the Boss was not watching and have little rests but after a while the others would 'dob me in' so that is when the lazy tag started.

Hey Barbara,

Wow, I can't even imagine standing for that many hours and days. I sure hope you aren't over doing it. If this is something new happening, you should call your neuro and fill him/her in. I too use to do so much on days I felt strong and then end up paying for it on the couch for sometimes days. Now I only do that once in a while...just isn't worth the price. Take care and let us know how you're doing.

Hugs,
Pat