Well, I'm not in remission, but... I don't avoid those things, either. I do what I can, within my limits. If I start getting tired, I stop. I figure three bites of steak are better than none. Not sure how helpful that is, but its how I have coped with it and been able to continue doing all I do.

I could probably walk for close to an hour now, and I certainly can eat a steak any time. Just not at the same time..haha. I don't take hot baths, but I would be willing to give it a try, probably just like a sauna or spa. I do take normal showers, which would be considered hot. I do have some weakness symptoms in my arms and at different difficulty in the shower due to heat at times depending on timing of mestinon. I am not in remission on medication at this time.

Anyway,
I would think the only trigger you would need to try to avoid, if in remission, would be abnormal and high stress. From what I have heard through testimonies, that seems to bring it back...

hope that helps

TJ

I take a hot bath every morning and walk in the woods for an hour whenever I can--then I take a nap. Not a problem though.

I live for the day that I can go back to walking like I use to. I miss going for walks. I will get there someday. Sorry I can't help with your answer. I am curiouse also.

My goal is to go hiking with my daughter...hopefully this coming summer. That is what we had planned for this past summer...I even bought a book about 60 hikes in the Boston area and we were going to check them off as we did them. Then I got sick. I am determined to reach my goal! The first one listed is the Freedom Trail (we did it years ago) and I know I can stop and rest along the way if need be.

I still take hot showers, but won't take a bath. I'd be afraid not to be able to get OUT of the tub...lol...that would be a sight!

I'd try eating steak, but I am more of a chicken person. :)
Cindy

I was in remission for many years and I did everything and anything that I wanted . I went skiing in the mountains, bike riding, swimming, ate steak, danced all night long, drank beer and just had fun.

Six and a half years ago that ended. It was because of an abusive, stressful relationship. I can't say for sure that was the only trigger but it sure contributed to it.

So I agree with TJ, avoid stress if at all possible.

Gail

yes, stress. I went into remission for years unmedicated after a flare in 2003 that kept dropping me on my knees. Had 3 babies in 4 years... and um... it flared. :)

Why did you comment about steak.
I am wondering because I quit eating beef and I feel better.
Ann

Thank you for all your comments. I am trying to get a feel for life " in the future"..My neuro mentioned that I might never live symptom free, which was not something I had considered. I just thought it would be a certain period of time with MG weakness but with medication I would get better and then pick up my job and life again. I do not risk hot tub/bath as that uses up too many spoons and steak is just too hard to chew. On weak days I pick easy to chew/swallow foods. I still do not walk alone, as only last week my family had to pick me up from supermarket. I think if I did not have had that shower or eat that meat for lunch I might have had enough spoons for the grocery shopping.But I still live in hope that I will get much better and I am re-inventing a new self. Very exciting.

I think the most important thing to remember is not to try to get in front of yourself. Patience is extremely important in managing this disease, BC.

I always look at members' profile before I respond to their comments, to see how long they've been diagnosed. It may take several years to get stabilized. A few months into the disease might take you to a place where you wonder if you'll ever be your old self again. That's understandable and I was there, too.

I am not in remission but I am asymtomatic. I am still on a low dose of prednisone (4 and 2-1/2mg on alternating days). I am still tapering down, VERY carefully. But, what I will tell you, I am 7 years into this disease and while I can't do the extended physical labor that I used to do before MG, there aren't too many other non-physical activities that are affected.

Like TJ said, stay away from stress. But this is true even if you don't have MG.

Curt

Curt,

Do you still get any side effects from the prednisolone that makes you want to taper further. I had thought that I would consider it a win if I got to an average of 7.5mg per day and you are already on half that. I am so paranoid about the MG symptoms coming back that I am concerned about tapering to far.

Gwyn