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So, Alice, I'll join you for tea...I think all of us down here in MG Wonderland are much more sane than many of the doctors who try to heal us (I'm joking - your comment made me cheerful, there must be a book somewhere in these MG experiences, a symbolic journey of sorts similar to Alice in Wonderland.).
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I am in the process of writing one...
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I recently had a long chat during meditation with a man who considered himself to be in charge of my immune system
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In this meditation session turned dream, I was given back my old job working at a hazardous waste incinerator, and I was told to only do what I felt comfortable doing. The funny part about this job was that I think the incinerator represented my body trying to heal itself, "burning" all the "hazardous waste".
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I find this a wonderful way to deal with this seemingly impossible situation.
It turns the very scary and unknown into something familiar we have dealt with before. Also gives us some sense of control. Children do this all the time. Grown-ups only do it under extreme circumstances, or need special techniques like meditation.
During my respiratory failure episodes (shortly before my pulmonologist realized the severity of my condition and gave me a respirator) I had similar discussions with the angel of death (probably, brought about by the effect of CO2 on my brain). I was truly hallucinating and actually saw him standing on the window sill. He promised me that my professional skills will help me, just like they have helped my patients. But, he also explained to me that, just like my patients, I do need another physician to take care of me and can not keep on fighting him on my own. He reminded me of a previous encounter a few years earlier (When I was hospitalized with a myasthenic crisis) and said that he can't keep on sparing my life, if I don't do my part as well.
He also made fun of me for being let down by some physicians not believing me. He reminded me of times I argued with arrogant colleagues who refused to do what I thought was required for my patients. He said I don't have to tell them I have met him (which would obviously make me appear crazy) but I do have to fight to receive proper care.
I think that under such extreme circumstances our mind recruits everything we have stored in our memory to help us transform it into something we can deal with. And also help us make practical decisions about what we should do, in an overwhelming situation.
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What you said does make sense...well, in the fact that it doesn't make sense to say MG is not severe just because a person hasn't had a crisis, which is basically what my neuro is saying.
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I think many neurologists find it hard to comprehend the extreme fluctuations of this disease. Not all of them are honest with themselves to admit that this is such a crazy disease they don't really understand. They do say it, but don't fully understand what it really means.
This, for instance, was written in my chart during one of my hospitalizations, after I had a severe and rapid deterioration when the dose of the steroids was increased, and the effect of plasmapheresis started to fade off:
“Having episodes of weakness. Unable to walk or swallow. Patient very scared. Has been on BIPAP once. VC=1.58. Dr. B informed who does not want to see patient. Dr. F. early thought weakness may be functional.”
"patient appeared to be sleeping when I went to give her the 23:00 dose of pyridostigmine. patient appeared very weak, not speaking very well and unable to raise her arms above the bed. unable to record VC. Bipap applied and patient observed over night."
This was how one of the physicians involved in my care interpreted it (in an e-mail she sent to a colleague, who wanted to receive information):
""When this patient was admitted here 2 years ago with SNMG, there was a general feeling that she had generalised MG plus some anxiety/depression?, which did not help much in her evaluation and treatment. It appeared to us clear that she responded to PEX, but she was possibly intolerant to steroids. "
When I asked my current neurologist if he has ever seen a patient like that, his answer was- yes, I have seen quite a few patients with myasthenic crisis. And it is not at all rare for patients with MG to go into crisis following treatment with steroids.
He didn't have any reasonable explanation (and neither do I) why those neurologists in a large MG center, couldn't just see the simple facts, and had to give such unreasonable explanations for what they could clearly see in front of their eyes-A patient who rapidly went into crisis following treatment with steroids.
I think neurology is one of the hardest and probably most fascinating fields of medicine, and only extraordinary people can truly deal with it. unfortunately, most neurologists are not extraordinary but very plain and superficial people. They don't have a deep understanding of the diseases they treat, the tests they use, not to speak of how those diseases truly effect the lives of real people.