I am in the process of writing one...

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.

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.

I wish you well with your book.

I have decided this is the best way to deal with MG and my stress issues, too. I consider this an extreme situation. From all I know, and all my neuro has told me MG is a permanent problem. My neuro says that the Mestinon only helps with the symptoms and that I will need treatments the rest of my life. End of story with neuro. As long as I am not approaching a crisis, he considers his job done. I want more than that.

This is the reason why I decided it was time to try experimental solutions, the ones that are relatively safe, things such as herbs, food, vitamins, and even meditation.

If my Inner Healer tells me that MG can be turned off when I am rested and healed, then I am going to trust him, and believe it with everything I have. Believing is necessary for the mind to help in the healing process, that I do know. What have I got to lose? Nothing. If none of this works, I am back where I started most likely, and I'm willing to take a few minor risks with a few herbs (these risks seem almost like nothing compared to steroids and immunosuppressants). I suspect that there is very little harm I can do with common herbs, meditation, vitamins and a change of diet.

Interesting to hear that your inner mind had similar messages.

To heal, if it is possible, I think we need it all, every memory, every instinct, and the help of our inner mind...this is a neurological problem after all...the wires must be connected somewhere so that the mind could actually make changes in the body's reaction.

I like the idea of a book...a symbolic book about MG or another chronic health condition. I'd like to read yours when you are done.

Thanks for the support and confirmation.

Hmm...

I think our mind can do a lot, but don't think it can do the impossible.

I think you need your inner strength to deal with your illness and the way it affects your life. and its great that you don't let it take over your life.

But, you also need a physician who will be your true partner in doing so.

I think it is fine to try herbs and anything else that can help, for a while.

But, if it doesn't work, you need to receive proper medical treatment.

The way you describe your symptoms and the way it affects your life, I don't think you have a mild illness.

MG is a chronic illness, but for many patients it can be under good control, with relatively low doses of medications and relatively minor side-effects.

I agree that sometimes the treatment may be worse than the illness itself. That is why you need someone who will be your true partner in thinking about the potential risks vs. the possible benefits.

Hope you do better soon,

Alice