Quote:
Originally Posted by AnnieB3
Alice, This is probably the sticking point with MG, at least between me and some neurologists. This is something I wrote when I was ticked off at them for ignoring the obvious.
"I still think it’s funny when neuros say that your MG is mild; like it’s an inert gas. Of course it’s going to be mild just sitting there – inert – in a doctor’s office. Add heat or movement and you have an MG explosion!"
And I think MG is not unlike earthquakes. The higher the quake is on the Richter Scale, the more exponentially worse it gets. The more you do with MG, the worse it gets.
And doctors often say how "scientific" and "objective" they are (no offense meant) but then they ignore the obvious or don't validate tests like pulmonary function tests that are objective. They often say, I believe out of ignorance, that PFT's often appear worse due to a "lack of effort." Or if you have hyperventilation on an arterial blood gas that you must be anxious. Or (sorry, Rach, I HAVE TO use this one) that you are holding your breath when your O2 stats tank.
There's nothing easy about this disease, from diagnosis to treatment, that's for sure. And quite often, neurologists do not make it any easier. As if we are all "faking it" or want to be sick. Poppycock.
I'm sorry you are in a wheelchair but thank goodness you can afford one.
Annie
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Annie,
you are right, I am really fortunate, that apart from this illness, I pretty much have anything a person could wish for.
I not only can afford a wheelchair, but many other tools and aids, without which I would be pretty much bed-ridden and not able to do much a significant part of the time.
I also have enormous support from friends, family and colleagues.
and I agree with you that physicians are many times not more objective then their patients, and although there are many scientific aspects to medicine, it is not of much use without the art of it, as well.
and I too have heard that I am not "putting enough effort" into my respiratory tests. (when my pulmonologist said if I would put a bit more effort, he would have to "scrape" me from the floor). and that I was "hyperventilating", and that I was "not breathing" (as if I didn't notice it myself).
why did they think that (forgive me for using this word-BS)? I wish I knew.
cause' if I could figure out why they think that way, I could probably find the way to explain to them why they are wrong.
as you have said, I am very fortunate in many ways, and that is why I manged to get out of this, with out too much irreversible physical or emotional damage. ( although you can never know what would happen if.. and I don't want to think about that too much, as what good will it do anyhow).
and that is why I want to do everything that I can, using my professional and personal experience, to change the way this illness is managed so that there will not be many more patients in the world that will have to go through this.
does that make sense?
alice