[Stellatum]

So, my MG has been pretty stable, but two days ago in the evening I suddenly collapsed. It took me ten minutes, with my husband's help, to get to bed, because I couldn't even crawl--my arms were too weak. I had spent the rest of the day doing normal things--cleaned the house, cooked supper, taught the kids, zipped up and down the stairs all day. You wouldn't have known that anything was wrong with me at all if you had seen me that day, until I ended up on the floor.

The next morning, I was really weak. Used my walker to get from the car to church, and had to be pushed out on it back to the car. That was a first. I have never used my walker in church before. Then I was weak and heavy all day long. Today I'm zipping up and down the stairs again like usual, though I expect to be weak in the evening.

So, what triggers such an intense and sudden flare-up like that? There's a lot of emotional stress in my life at the moment. It could be that, though I've never really noticed a connection before. My best theory is that people in the house are starting to come down with a cold/sore throat that some visitors brought last week. I didn't feel sick, but I noticed a swollen lymph node in my neck. Does that make sense? My immune system launched itself into high gear (in spite of 250 mg. Imuran/day) to fight off this infection, and in doing so attacked my muscle receptor cells violently as well?

Anyone interested can list their triggers here. We can help each other consider the possibilities.

Abby

[alice md]

With MG you have to try and understand the illness as much as you can, while coming to terms with the fact that there is probably much you will not be able to understand and just have to accept.

I have triggers I have been aware of from the relatively early days of my illness (such as heat, viral infections), triggers I have learned about with time (such as over-exertion, certain medications), triggers I learned of after much longer time (certain foods, cosmetics etc.)

With all that, I probably do have better control of my illness (than I did in the very early days) and better ways to avoid worsening, yet there are still times I crash for (what seems like) no good reason, and still times when it is just unrealistic to avoid known triggers.

So, I am also more ready to accept the fact that there are times when I have severe exacerbations and I just have to dive under until they are gone.

I realize, looking back that I would feel guilty and helpless every time this would happen in the past. In fact, I personally found more triggers and ways to control my illness when I stopped looking for them.

[cait24]

I still do not have a definitive diagnosis yet (seronegative), but here are my triggers:

#1 Surgery - I have had several surgeries. I do not tolerate the anesthesia well and end up sick for month with exhaustion, weigh loss, and fatigue. It takes me a year to recover from even a simple endoscopy surgery like gall bladder. After the last surgery, I think I will need to be dying before I ever consider another surgery for the rest of my life.

#2 heat !! Heat bring on immediate exhaustion. I set my winter thermostat at home at 64 during the day and 58 at night and I feel so much better. Unfortunately I cannot afford to set my summer thermostat to the point where I feel good - 67 degrees.

#3 stress - arguing with my teenage daughter can bring on an exacerbation so fast, and especially the breathing and choking symptoms.

#4 not enough sleep - I try to get 10 hours every night. 10 hours is the point where I feel good. On the weekend, I get around 15 hours a night to recover for the workweek. As the work week progresses I fell worse. My symptoms are all down hill from Wednesday on.

thanks
kathie

[southblues]

Getting upset about my 24 year old daughter seems to have triggered mine.

[cait24]

Every article I read about MG says how much worse the symptoms are in heat. They also use ice to test the relief of symptoms. But how does this work? Are the antibodies ineffective in cold temperatures? I do not understand the mechanism.

I know some articles say both extreme hot and cold effect MG. But only the heat bothers me. I love the cold weather and feel great even in freezing temps. And when my legs are bad I put ice on them and the symptoms subside.

If MGers are so affected by heat, why don't they recommend those ice jackets like they use for MS patients?

Just curious,
kathie

[southblues]

I don't know if this is true because I just thought it up myself, but I am thinking that heat allows acetylcholinesterase to work properly. Going on that assumption, I would think that cold would inhibit it. Then based on this idea, cold would work the same way that mestinon works; decreasing acetycholinesterase therefore increasing acetylcholine.

Anybody know if that is right?

[Stellatum]

The heat doesn't increase my symptoms, and neither does the cold. The only triggers I know about for me are activity/exercise, female hormone shifts, and fighting off a virus. Oh, and time of day! Late afternoon often makes me weak, and as far as I can tell it has nothing to do with whether I've eaten recently or not.

Abby

[StephC]

When dr benatar spoke at meeting i went to he said in general nerve muscle communicates better in cold versus hot, regardless of MG issues .

[Anacrusis]

As far as I know cold improves neuromuscular transmission. Thatīs why ptosis is temporarily relieved with ice pack tests.

My identifiable physical triggers have been:

Antibiotics, sedatives, heat, repetitive muscle use & altitude

[cait24]

Originally Posted by southblues

I don't know if this is true because I just thought it up myself, but I am thinking that heat allows acetylcholinesterase to work properly. Going on that assumption, I would think that cold would inhibit it. Then based on this idea, cold would work the same way that mestinon works; decreasing acetycholinesterase therefore increasing acetylcholine.

Anybody know if that is right?

I think you may be right. I read in an article on the internet (I do not remember what site so I do not know if it is reputable) that the bigger muscles are more affected by MG because the bigger the muscle, the hotter the muscle would "burn" so they are affected sooner. I know that is true for me. My muscles most affected are the thigh, hip flexors, latts, deltoids and pectorals.

thanks
kathie