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Alice, I have to respectfully disagree.
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You are right that most studies on MG are done by neurologists, whose ability to evaluate improvement is limited and also have their "wishful thinking" about their patients.
But still the overall impression I got from the medical literature and from patients I talked with is that most do have improvement in their illness with time.
I agree that this may be overestimated. And it is clearly not the "everyone can lead a normal life with minimal medications" notion prevalent in the medical community.
Regardless there are definitely patients who do not have improvement and some who have significant worsening in their condition. (although my neurologist thinks that even such patients may have significant improvement at a later stage, since it is such a crazy and unpredictable disease, but that's his "wishful thinking" not mine).
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I think hope is great but false hope is so damaging.
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As you know, I fully agree with that. But, I do think that patients in the early stages of their illness can have realistic hope for improvement if not recovery.
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And if they did studies on how "we" are, would they include all of those undiagnosed MG patients?
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As you know I am very concerned about the management of those patients and do my best to help them. I believe they have a different type of MG and therefore their illness is hard to diagnose and less likely to respond to the commonly used treatments. They do not have antibodies and they have a normal EMG and less typical clinical course because they have a different underlying mechanism of their disease and therefore their prognosis is probably also different. But, that's a different topic...