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Old 01-07-2013, 07:40 PM #1
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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.

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Old 01-07-2013, 09:15 PM #2
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Getting upset about my 24 year old daughter seems to have triggered mine.
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Old 01-08-2013, 12:28 AM #3
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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,
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Old 01-08-2013, 08:09 AM #4
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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?
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Old 01-08-2013, 08:28 AM #5
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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
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Old 01-08-2013, 08:29 AM #6
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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 .
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Old 01-08-2013, 09:22 AM #7
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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
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Old 01-08-2013, 07:33 PM #8
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Quote:
Originally Posted by southblues View Post
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.

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Old 01-08-2013, 09:45 PM #9
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anacrusis - you say altitude, which is really interesting.. I have only been at high altitude once since my symptoms really got bad.. .. It was hot too, so I chalked it up to that.. but I almost got stuck walking in a square in Boulder since my hips just wouldn't work anymore! it was bad! The whole trip I was so weak!

And, if I think back since my 20's when I was hiking in altitude I could barely put one foot in front of the other, but I always thought I was just simply altitude intolerant! :0
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Old 01-15-2013, 03:54 AM #10
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Note Annie

Annie, can you elaborate on this? Talking absolutely exhausts me to the point where I prefer to avoid it at all costs. I'd like to understand this better:

"Someone without MG doesn't realize how talking stresses the body but MGers notice more quickly how it can tank a LOT of muscle groups at once. It can leave you open for more generalized weakness and not just certain muscle groups. "

Thanks!
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