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Originally Posted by AnnieB3
You should see that ONE photo of an MG patient on that TWO page spread in their medical books. It's an exaggerated photo.
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I figured as much. Earlier edits of my post indicated a similar conclusion.
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Students are taught in medical school that what they are being given are the "right" answers. Period. If they were taught all of the variables of pathophysiology, diseases, presentation and treatments, they'd be in school for 20 years. That's why there are specialists. 
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It comes back to that concept "curiosity of spirit". I work with cancer patients, and when I encounter a rare cancer, I get intellectually excited by its uniqueness and try to learn more about the cancer. I'd think these doctors SHOULD be excited to see me! It should make their month!
I want a complete role-reversal where the doctors are going all out to schedule an appointment with us! Given MG's rarity, doctors should be climbing over each other, begging for a chance to stake their claim at diagnosing this & being involved first hand. It'll be like one of those reality show spinoffs,.. "Who's deserving of the rose? Who's shown me the most respect, heard me, demonstrated a willingness to stick out their neck, do research & ask questions? Who recognizes nose ptosis when they see it? Okay, You! Third from the left! Step forward! You win 'Beee Myyy Doctorrrr!!'"
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If one of those four doctors who said mild ptosis is not indicative of MG is a neurologist, they need to go back to school.
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He needs to go back to school. 'Nuff said, I can't talk about that man.
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Have you seen a neuro-ophthalmologist?
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Thank you, I'd not heard of this. I've made a note in my MG bible to revisit it.
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What excuse would all of your doctors give for my nose to droop? Humidity?
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Hahaahahaaaaa!!!!
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This is all so incredibly stupid I feel like taking another shot at enacting new legislation. This behavior by doctors is ABUSIVE. Workers are protected from abuse. Children are too. Why aren't patients protected from abusive doctors?!!
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We're in mind-meld agreement. The fact you're already such an advocate for us on the board, and with your wealth of knowledge,.. that would be beautiful to see.
I haven't contacted this group yet, but I hope they can do something to help: Advocacy for Patients with Chronic Illness
http://www.advocacyforpatients.org/
Also, a friend has directed me to ADAPT. In the 80's, they chained themselves together during rallies fighting for the passage of the Americans with Disabilities Act (ADA). They are also very active in Medicaid reform.
www.adapt.org
MG'ers would make the perfect protestors for reform. The Powers would have a heck of a time dragging away our limp bodies....
01-24-2013, 05:04 AM
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