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Old 04-28-2012, 08:05 AM #11
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The reason I wasn´t seen by anyone before remission is that my doctor diagnosed me with psychosomatic fatigue syndrome
Unfortunately, there are numerous patients who are given this diagnosis. (without any proof of psychosomatic problems other than the physical illness).

Some of them probably recover on their own, and some probably don't.

unfortunately, most diseases are not fixed with our own mind (or else we would not become ill in the first place). It only makes people feel guilty for not "trying hard enough" to recover.

I am glad that you are doing better, and hope it will last for ever.

I think it is good that you insisted on perusing this, even though you had such dramatic improvement. This way if your illness returns some day (and I hope it will not) you will know where to turn to.

I also hope that within the next few years there will be a better understanding of myasthenia and other fatigable diseases and syndromes. And better and more effective ways of treating them.
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Old 04-30-2012, 06:23 PM #12
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Originally Posted by alice md View Post

In some MG patients, other muscles can be sensitive to those effects. This phenomenon has been described by Marry Walker who noticed that when MG patients used their arm repetitively it caused ptosis and generalized weakness.
Thanks for this information, Alice. I have been meaning to ask about this; why I get ptosis and general fatigue after changing the air filter, or squatting to see products on the bottom shelf at the supermarket. I'd thought perhaps this pointed more to other diagnoses than MG, so this is good to know.
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Old 05-09-2012, 05:45 PM #13
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Thanks for all your help. I saw the doctor today. He said whatever I have cannot be diagnosed, and I'll just have to settle for symptomatic treatment. Whatever. I don't care what we call it, I just want to feel better.

Out of all the strategies/conditions I asked about, he felt we should start with a Mestinon trial. His words... "We give it to ALS patients, and they feel better, too. We really don't care if it's a placebo effect you're getting...."

Anyway, tomorrow I pick up Mestinon - 60mg every 4 hours, to see how it goes.

Tatia
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