Grand Magnate
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Join Date: Feb 2009
Posts: 3,306
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Grand Magnate
Join Date: Feb 2009
Posts: 3,306
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Rach, You've probably gone to bed by now but I had to add a few things.
First, Make sure he knows that you respect him - in spite of probably disagreeing with him. You don't want to make a doctor your enemy, even though he's already acting like one.
Second, Go through very methodically, without any drama, the "facts" that show you have what looks like MG. Do NOT make the declaration that you have MG because, if you are dealing with an arrogant person/doctor, they will see that declaration as "you knowing more than they do." Nothing ticks off doctors more.
Three, You can politely tell him that you looked up "cognitive plasticity" and found it to not be a disease but a state of the brain that is good to have. Or make him define what he means by that.
You could always go the emotional route and ask him if he has a daughter and how would he like her to be treated if she had all the symptoms and test results pointing to MG?
I know it's hard not to make snide comments or be sarcastic with a doctor who is being such an idiot. Remember that no doctor likes to be proven wrong and what you are telling him is basically doing that. You could say "remember when you said I was clinically weak?" or "what do you think of those oxygen stats going so low?"
If the appt. is going nowhere, you could always ask if he would like to be responsible for your death, when you die in your sleep of anoxia (no oxygen).
I'm not telling you what to say - that's totally up to you. Just giving you some more ideas from all my experiences. You are in a tough situation and it personally makes me insane how doctors treat patients in your country. You have very objective evidence, that cannot be "faked," like the O2 stats and the response to Tensilon.
And you may want to bring up testing for congenital myasthenic syndromes, which can be done with blood tests (Oxford does those). They are very specialized tests which only a handful of places around the world do. Or ask to have the antibodies for MG redone.
I hope the appointment goes well. I know how hard this is and I wish nothing but the best for you.
Annie
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