Comments on: Where is the Medical Curiosity? http://takeusseriously.org/2009/04/where-is-the-medical-curiosity/ Resources for Undiagnosed & Misdiagnosed Patients Fri, 03 Feb 2012 00:25:22 -0700 hourly 1 http://wordpress.org/?v=3.1.4 By: bulletpointblogger http://takeusseriously.org/2009/04/where-is-the-medical-curiosity/comment-page-1/#comment-3 bulletpointblogger Mon, 27 Apr 2009 19:05:49 +0000 http://bulletpointblogger.wordpress.com/?p=14#comment-3 Miss Waxie - your comic is genius, saying it all in a unique and telling way! Your endocrinologist hit it on the nose, didn't he? I'm glad you found encouragement in our shared journey. Barbara at the Autoimmune Information Network should be able to help you find doctors who will take you seriously in your area, and is a font of knowledge about proper testing. Congratulations on surviving the medical system of yesterday and today and continuing to fight on! Please do share with us what you've learned works in the process so we can create a better experience for undiagnosed patients in the future. The Bullet Point Blogger Miss Waxie – your comic is genius, saying it all in a unique and telling way! Your endocrinologist hit it on the nose, didn’t he? I’m glad you found encouragement in our shared journey. Barbara at the Autoimmune Information Network should be able to help you find doctors who will take you seriously in your area, and is a font of knowledge about proper testing.

Congratulations on surviving the medical system of yesterday and today and continuing to fight on! Please do share with us what you’ve learned works in the process so we can create a better experience for undiagnosed patients in the future.

The Bullet Point Blogger

]]> By: misswaxie http://takeusseriously.org/2009/04/where-is-the-medical-curiosity/comment-page-1/#comment-2 misswaxie Mon, 27 Apr 2009 05:36:50 +0000 http://bulletpointblogger.wordpress.com/?p=14#comment-2 My god does my story sound like yours. And isn't that horrifying in and of itself? That there could be more than one of these horrible things floating around in the world? While I don't have a brain tumor, after 20 years of being sick, I finally got a doctor who looked past 20 year girl who weighed 20 more lbs than she should, and ran every blood test in the book. Literally, over 60 blood tests in 27 tubes of blood. The hospital made me lie down afterward. And what did he find? Celiac disease. hashimoto's disease. and with the help of emg's a varrient of cidp (though i'd had others before, no doctor ever read into my test results). I got BETTER under his care - though, i still developed lupus & ra, but that was inevitable, given how many years my system had suffered with undxed autoimmune things... ...but the part of my story that so sadly feels like yours is that upon moving back home (after i got too sick to live on my own), doctors in this city reviewed my case, my file, my test results and have determined "Nope. I just don't see a problem here. She just doesn't have those diseases as we know them." ...my endocrinologist in nyc once told me that doctors who weren't interested in my case weren't interested in medicine. And that's the bottom line, isn't it? The difference between interest in medicine (or medical curosity) and the interest in the *business* of medicine. Anyway. I hope the best for the both of us and I SINCERELY thank you for this empowerment. After being told my EMG isn't even indicitive of ANY problems this past week, I've felt crushed - this reminds me i have to KEEP FIGHTING! I know I'm right - and you are too!! I write a comic about my often comic adventures in the medical system called A Comic Life, Indeed - you can find it at http://acomiclifeindeed.wordpress.com - and I'd love for you to check it out if you're ever in need of a good medical related laugh or just to know that you're not alone in all this madness. Wishing you the sincere best, - Miss Waxie My god does my story sound like yours. And isn’t that horrifying in and of itself? That there could be more than one of these horrible things floating around in the world?

While I don’t have a brain tumor, after 20 years of being sick, I finally got a doctor who looked past 20 year girl who weighed 20 more lbs than she should, and ran every blood test in the book. Literally, over 60 blood tests in 27 tubes of blood. The hospital made me lie down afterward.

And what did he find? Celiac disease. hashimoto’s disease. and with the help of emg’s a varrient of cidp (though i’d had others before, no doctor ever read into my test results). I got BETTER under his care – though, i still developed lupus & ra, but that was inevitable, given how many years my system had suffered with undxed autoimmune things…

…but the part of my story that so sadly feels like yours is that upon moving back home (after i got too sick to live on my own), doctors in this city reviewed my case, my file, my test results and have determined “Nope. I just don’t see a problem here. She just doesn’t have those diseases as we know them.”

…my endocrinologist in nyc once told me that doctors who weren’t interested in my case weren’t interested in medicine. And that’s the bottom line, isn’t it? The difference between interest in medicine (or medical curosity) and the interest in the *business* of medicine.

Anyway. I hope the best for the both of us and I SINCERELY thank you for this empowerment. After being told my EMG isn’t even indicitive of ANY problems this past week, I’ve felt crushed – this reminds me i have to KEEP FIGHTING! I know I’m right – and you are too!!

I write a comic about my often comic adventures in the medical system called A Comic Life, Indeed – you can find it at http://acomiclifeindeed.wordpress.com – and I’d love for you to check it out if you’re ever in need of a good medical related laugh or just to know that you’re not alone in all this madness.

Wishing you the sincere best,

- Miss Waxie

]]>