Comments for Take Us Seriously http://takeusseriously.org Resource Center for Undiagnosed & Misdiagnosed Patients Sat, 28 Aug 2010 17:05:50 -0700 hourly 1 http://wordpress.org/?v=3.0.1 Comment on "You Can't Have That or You'd Be Dead By Now" by Donna http://takeusseriously.org/2009/10/you-cant-have-that-or-youd-be-dead-by-now/comment-page-1/#comment-602 Donna Sat, 28 Aug 2010 17:05:50 +0000 http://www.eruditebyte.com/bulletpointblog/?p=76#comment-602 I was referred to a cardiologist for SOB, Ekg show abnormal heart rhythm he wrote in his note no need for treatment she is asymptomatic. I was referred to a cardiologist for SOB, Ekg show abnormal heart rhythm he wrote in his note no need for treatment she is asymptomatic.

]]> Comment on "You Can't Have That or You'd Be Dead By Now" by Donna http://takeusseriously.org/2009/10/you-cant-have-that-or-youd-be-dead-by-now/comment-page-1/#comment-601 Donna Sat, 28 Aug 2010 16:43:21 +0000 http://www.eruditebyte.com/bulletpointblog/?p=76#comment-601 When I told the endocrinologist that I had memory loss and I had to program my GPS to get me to where I was going or I'd forget, she stated she gets lost without her GPS. Not a doctor I wanted to see again. When I told the endocrinologist that I had memory loss and I had to program my GPS to get me to where I was going or I’d forget, she stated she gets lost without her GPS. Not a doctor I wanted to see again.

]]> Comment on "You Can't Have That or You'd Be Dead By Now" by Donna http://takeusseriously.org/2009/10/you-cant-have-that-or-youd-be-dead-by-now/comment-page-1/#comment-600 Donna Sat, 28 Aug 2010 16:40:00 +0000 http://www.eruditebyte.com/bulletpointblog/?p=76#comment-600 I went to the surgeon to have a second biopsy of a new lipoma done as the allergist thought I one might be a sterile abcess. He refused to biopsy it stated it was just another lipoma and he did not want to make a patchwork quilt out of me. ( wow he must be pretty crafty) I went to the surgeon to have a second biopsy of a new lipoma done as the allergist thought I one might be a sterile abcess. He refused to biopsy it stated it was just another lipoma and he did not want to make a patchwork quilt out of me. ( wow he must be pretty crafty)

]]> Comment on "You Can't Have That or You'd Be Dead By Now" by Donna http://takeusseriously.org/2009/10/you-cant-have-that-or-youd-be-dead-by-now/comment-page-1/#comment-599 Donna Sat, 28 Aug 2010 16:36:24 +0000 http://www.eruditebyte.com/bulletpointblog/?p=76#comment-599 When I asked the rheumatologist' PA to look at how purple my feet had turned in just the short time sitting on the exam table talking to her she looked down at her feet and responded mine too. (they were as white as a ghost) When I asked the rheumatologist’ PA to look at how purple my feet had turned in just the short time sitting on the exam table talking to her she looked down at her feet and responded mine too. (they were as white as a ghost)

]]> Comment on Personal Medical Coach Wanted by Pamela http://takeusseriously.org/2009/04/personal-medical-coach-wanted/comment-page-1/#comment-598 Pamela Wed, 25 Aug 2010 03:18:15 +0000 http://bulletpointblogger.wordpress.com/?p=27#comment-598 I am Board Certified in Integrative Medicine, an acupuncturist, and a member of Harvard's Post Graduate Association. I try to have a very balanced approach to healthcare. I love a challenge!! I do have a virtual office, with a network of several physician's. This was created exactly for this purpose. We are able to consult each other, and You, the patient. If You would like more information, email me at pmckimie@gmail.com. Hope to here from you soon!! I am Board Certified in Integrative Medicine, an acupuncturist, and a member of Harvard’s Post Graduate Association. I try to have a very balanced approach to healthcare. I love a challenge!! I do have a virtual office, with a network of several physician’s. This was created exactly for this purpose. We are able to consult each other, and You, the patient.
If You would like more information, email me at pmckimie@gmail.com.

Hope to here from you soon!!

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-397 Ellen Mon, 02 Aug 2010 07:39:11 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-397 Sage advice, Adrienne - especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment! Sage advice, Adrienne – especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment!

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Adrienne C. http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-396 Adrienne C. Mon, 02 Aug 2010 07:34:00 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-396 As a medical professional myself, it is important for the patient to relay all necessary information. However, not to sound condescending, we don't have much time or room on the history intake form to put EVERYTHING down. We don't need nor want to hear a patient's life history but rather the succinct and to-the-point info. Basically, it's how long have you had symptoms, where does it hurt, past trauma?, etc. It's difficult for the medical professional to condense a big sob story into pertinent information necessary for the doctor or whomever to diagnose and treat the patient. Remember that doctors are not God. Medicine is still a mystery and can be sometimes perplexing even for the most well-seasoned and experienced physician. (Maybe that's why the call it a 'practice'.) I DO most definitely agree with getting all and every single copy of results, records, etc., even if it costs you for "extra copies". It's NOT to make your OWN diagnosis but to have it for proof, in case there's a discrepancy in billing or need it for legal purposes. Like it was said before, it's a patient's right to see and have one's medical records. Just be very careful that you don't get in over your head. As a medical professional myself, it is important for the patient to relay all necessary information. However, not to sound condescending, we don’t have much time or room on the history intake form to put EVERYTHING down. We don’t need nor want to hear a patient’s life history but rather the succinct and to-the-point info. Basically, it’s how long have you had symptoms, where does it hurt, past trauma?, etc. It’s difficult for the medical professional to condense a big sob story into pertinent information necessary for the doctor or whomever to diagnose and treat the patient.
Remember that doctors are not God. Medicine is still a mystery and can be sometimes perplexing even for the most well-seasoned and experienced physician. (Maybe that’s why the call it a ‘practice’.)
I DO most definitely agree with getting all and every single copy of results, records, etc., even if it costs you for “extra copies”. It’s NOT to make your OWN diagnosis but to have it for proof, in case there’s a discrepancy in billing or need it for legal purposes. Like it was said before, it’s a patient’s right to see and have one’s medical records. Just be very careful that you don’t get in over your head.

]]> Comment on An Undiagnosed Patient’s Journey to Diagnosis by Celeste http://takeusseriously.org/2010/07/undiagnosed-patient-journey-to-diagnosis/comment-page-1/#comment-395 Celeste Mon, 02 Aug 2010 02:33:16 +0000 http://takeusseriously.org/?p=196#comment-395 Ellen, I am so glad that you also received a diagnosis after so many years of searching. I want to thank you so much for sharing your story. I am hoping that the more we all talk about Dercum's disease, the more other people will finally get their diagnosies and the more the medical community will be educated in Dercum's disease. Spreding the word about Dercum's disease is the only way that more research will be done on Dercum's disease. Ellen, I am so glad that you also received a diagnosis after so many years of searching. I want to thank you so much for sharing your story. I am hoping that the more we all talk about Dercum’s disease, the more other people will finally get their diagnosies and the more the medical community will be educated in Dercum’s disease. Spreding the word about Dercum’s disease is the only way that more research will be done on Dercum’s disease.

]]> Comment on An Undiagnosed Patient’s Journey to Diagnosis by Ellen http://takeusseriously.org/2010/07/undiagnosed-patient-journey-to-diagnosis/comment-page-1/#comment-389 Ellen Sat, 31 Jul 2010 23:22:59 +0000 http://takeusseriously.org/?p=196#comment-389 Celeste, I'm sorry to hear your journey was difficult like mine. I definitely had my share of psych referrals! My favorite quote from a psychiatrist's notes: "Likes to collect diagnoses." I'm glad you finally found your diagnosis, and I hope you've found some easement through effective management of pain and other symptoms. Celeste, I’m sorry to hear your journey was difficult like mine. I definitely had my share of psych referrals! My favorite quote from a psychiatrist’s notes: “Likes to collect diagnoses.” I’m glad you finally found your diagnosis, and I hope you’ve found some easement through effective management of pain and other symptoms.

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-388 Ellen Sat, 31 Jul 2010 23:12:36 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-388 Thank you for this important guidance, Nicole! You're right - it's <em>so</em> important to get copies of all medical orders and records and review them! <a href="http://www.labtestsonline.org" target="_blank" rel="nofollow">Lab Tests Online</a> is a great website for understanding lab tests, and <a href="http://www.auntminnie.com" target="_blank" rel="nofollow">Aunt Minnie</a> provides helpful information for understanding imaging tests. Thank you for this important guidance, Nicole! You’re right – it’s so important to get copies of all medical orders and records and review them! Lab Tests Online is a great website for understanding lab tests, and Aunt Minnie provides helpful information for understanding imaging tests.

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-387 Ellen Sat, 31 Jul 2010 23:06:47 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-387 How unfortunate that the doctor saw your comments about your health as "tangential" and not "thorough"! Great advice, Nicole - thank you! How unfortunate that the doctor saw your comments about your health as “tangential” and not “thorough”! Great advice, Nicole – thank you!

]]> Comment on "You Can't Have That or You'd Be Dead By Now" by Celeste Burckhardt http://takeusseriously.org/2009/10/you-cant-have-that-or-youd-be-dead-by-now/comment-page-1/#comment-386 Celeste Burckhardt Sat, 31 Jul 2010 21:47:32 +0000 http://www.eruditebyte.com/bulletpointblog/?p=76#comment-386 "You just can't come in for a test everytime you find a list of symtoms for a disease that matches your symptoms" then at the end of the visit he says, "let me know if you find any other disease that has your symptoms". “You just can’t come in for a test everytime you find a list of symtoms for a disease that matches your symptoms” then at the end of the visit he says, “let me know if you find any other disease that has your symptoms”.

]]> Comment on An Undiagnosed Patient’s Journey to Diagnosis by Celeste Burckhardt http://takeusseriously.org/2010/07/undiagnosed-patient-journey-to-diagnosis/comment-page-1/#comment-385 Celeste Burckhardt Sat, 31 Jul 2010 21:40:05 +0000 http://takeusseriously.org/?p=196#comment-385 Your story of your constant quest for answers and a proper diagnosis for your medical ailments sounds so familiar to my own. I also have Dercum's disease and was finally diagnosed after 27 years. I have been called a "kook" and told it was "all in my head" from several people who were suppose to be professional doctors. I also found the answers to my medical quest first by searching "painful lypomas" on the web. Then I contacted the famed Mayo Clinic to find a Dr. who could give the diagnosis. The only thing I worry about now is what all of these "unbelieving" and "under educated" Dr.s have written about me in my records just because they couldn't find the answers and brushed me off as a nutty person who didn't know what I was talking about. Your story of your constant quest for answers and a proper diagnosis for your medical ailments sounds so familiar to my own. I also have Dercum’s disease and was finally diagnosed after 27 years. I have been called a “kook” and told it was “all in my head” from several people who were suppose to be professional doctors. I also found the answers to my medical quest first by searching “painful lypomas” on the web. Then I contacted the famed Mayo Clinic to find a Dr. who could give the diagnosis. The only thing I worry about now is what all of these “unbelieving” and “under educated” Dr.s have written about me in my records just because they couldn’t find the answers and brushed me off as a nutty person who didn’t know what I was talking about.

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Nicole S http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-382 Nicole S Sat, 31 Jul 2010 15:46:56 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-382 I was surprised to find that notes in an intake at an urgent pain clinic revealed that "The patient speaks tangentially" which hurt my feelings because I was only trying to be forthcoming, trying to give information that I thought would help. Instead I was seen as a talkative fool. I have learned that doctors and other medical personnel do not want voluntary information. It is better just to wait for them to ask precise questons and answer their in brief, concise and as if I don't know anything at all about my body. How disappointing. The more I know the less I should reveal has been the unfortunate lesson learned by me. All of this information went into my medical records which the disability judge looked at and denied me benefits, in a large part because incorrect information had been recorded. I had a problem with my left knee, a torn meniscus, and it was recorded as my having twisted my right knee. Make sure the information is accurate and ask to see what has been recorded. Medical personnel make mistakes. Doctor's handwriting is often difficult to decipher and when done so by another person it is often recorded incorrectly. get your records and have mistakes addressed at your next appointment. If corrected it can make a difference in your treatment outcome. I was surprised to find that notes in an intake at an urgent pain clinic revealed that “The patient speaks tangentially” which hurt my feelings because I was only trying to be forthcoming, trying to give information that I thought would help. Instead I was seen as a talkative fool. I have learned that doctors and other medical personnel do not want voluntary information. It is better just to wait for them to ask precise questons and answer their in brief, concise and as if I don’t know anything at all about my body. How disappointing. The more I know the less I should reveal has been the unfortunate lesson learned by me. All of this information went into my medical records which the disability judge looked at and denied me benefits, in a large part because incorrect information had been recorded. I had a problem with my left knee, a torn meniscus, and it was recorded as my having twisted my right knee. Make sure the information is accurate and ask to see what has been recorded. Medical personnel make mistakes. Doctor’s handwriting is often difficult to decipher and when done so by another person it is often recorded incorrectly. get your records and have mistakes addressed at your next appointment. If corrected it can make a difference in your treatment outcome.

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Nicole S http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-381 Nicole S Sat, 31 Jul 2010 15:09:39 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-381 Something I learned recently may be helpful when trying to find a doctor who will actually listen to their patient. I recently had the opportunity to look at my physiatrist's notes in my chart. I was shocked, very upset actually, to see that he had not heard what I said, he had written things that were absolutely not true, written that he had spent most of the appointment "counseling" me. he had ignored the reasons I had been referred to him. In fact he had written that I had no complaint of lower limb pain or weakness, which was one of the main reasons I went to see him. There was so much more that was incorrect I won't bother with describing it here. My point is that we have the right to see our doctor's medical notes about us and we should do so. We cannot establish a good relationship if we do not know what the doctor is actually transcribing in our records about us. It is so very important to have a doctor who is paying attention, annotating the appointment properly and we as patients cannot acquire good medical care if the doctor is not paying attention to us and hearing us. Furthermore, this type of medical notes in my record had a negative impact on my disability hearing. It was incorrect information that the judge had to look at and if the information is wrong, the outcome will be a denial of benefits. Get your records! You have a right to have them. The distress this has caused me has been terrible, which of course exacerbates pain. Not only do I not get treatment for the problem, I have been given an additional problem made for me by the doctor whom I was supposed to be able to trust. Get copies of your doctor's notes of your office visits. It is your right and your responsibility to know what is being recorded in your medical records that get seen by many people, other doctors and even judges. It can save time and help determine whether or not a doctor is suitable for you. Something I learned recently may be helpful when trying to find a doctor who will actually listen to their patient. I recently had the opportunity to look at my physiatrist’s notes in my chart. I was shocked, very upset actually, to see that he had not heard what I said, he had written things that were absolutely not true, written that he had spent most of the appointment “counseling” me. he had ignored the reasons I had been referred to him. In fact he had written that I had no complaint of lower limb pain or weakness, which was one of the main reasons I went to see him. There was so much more that was incorrect I won’t bother with describing it here. My point is that we have the right to see our doctor’s medical notes about us and we should do so. We cannot establish a good relationship if we do not know what the doctor is actually transcribing in our records about us. It is so very important to have a doctor who is paying attention, annotating the appointment properly and we as patients cannot acquire good medical care if the doctor is not paying attention to us and hearing us. Furthermore, this type of medical notes in my record had a negative impact on my disability hearing. It was incorrect information that the judge had to look at and if the information is wrong, the outcome will be a denial of benefits. Get your records! You have a right to have them. The distress this has caused me has been terrible, which of course exacerbates pain. Not only do I not get treatment for the problem, I have been given an additional problem made for me by the doctor whom I was supposed to be able to trust. Get copies of your doctor’s notes of your office visits. It is your right and your responsibility to know what is being recorded in your medical records that get seen by many people, other doctors and even judges. It can save time and help determine whether or not a doctor is suitable for you.

]]> Comment on About Take Us Seriously by Ellen http://takeusseriously.org/about-take-us-seriously/comment-page-1/#comment-380 Ellen Sat, 31 Jul 2010 13:10:51 +0000 http://takeusseriously.org/?page_id=266#comment-380 Thank you very much, Susan! I'm glad you posted a comment, as I hadn't seen your site yet -- as I read through it, I learned more about the symptoms of Dercum's than I had previously. Thank you for such a nicely organized and informative site, and I wish you all the best. Thank you very much, Susan! I’m glad you posted a comment, as I hadn’t seen your site yet — as I read through it, I learned more about the symptoms of Dercum’s than I had previously. Thank you for such a nicely organized and informative site, and I wish you all the best.

]]> Comment on About Take Us Seriously by Susan Grimshaw http://takeusseriously.org/about-take-us-seriously/comment-page-1/#comment-379 Susan Grimshaw Sat, 31 Jul 2010 11:50:38 +0000 http://takeusseriously.org/?page_id=266#comment-379 Wonderful site! So glad you were able to finally get a validating diagnosis....I totally understand your journey to a diagnosis. Wonderful site! So glad you were able to finally get a validating diagnosis….I totally understand your journey to a diagnosis.

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-305 Ellen Tue, 04 May 2010 20:34:33 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-305 Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients. Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients.

]]> Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-304 Ellen Tue, 04 May 2010 20:31:39 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-304 Hello Ellen! Your article about Why doctors don't take those who are undiagnosed seriously and how to change that situation are wonderful. May we have your permission to put them on the "In Need Of Diagnosis, Inc. (INOD) website? INOD is a 501(c)(3) nonprofit. Thank you, ---Marianne Hello Ellen! Your article about Why doctors don’t take those who are undiagnosed seriously and how to change that situation are wonderful. May we have your permission to put them on the “In Need Of Diagnosis, Inc. (INOD) website? INOD is a 501(c)(3) nonprofit.

Thank you,

—Marianne

]]> Comment on Share Your Stories by David Friedman http://takeusseriously.org/share-your-stories/comment-page-1/#comment-208 David Friedman Tue, 30 Mar 2010 16:23:50 +0000 http://takeusseriously.org/?page_id=264#comment-208 I have a 9 year long undiagnosed progressive illness and am very interested in sharing my story and seeing if there's a way of getting help that I have not thought of. I can email you my story if you send me your email address. My email is (removed for privacy). Thank you and I look forward to hearing from you. David Friedman I have a 9 year long undiagnosed progressive illness and am very interested in sharing my story and seeing if there’s a way of getting help that I have not thought of. I can email you my story if you send me your email address. My email is (removed for privacy).

Thank you and I look forward to hearing from you.

David Friedman

]]> Comment on Personal Medical Coach Wanted by Simone http://takeusseriously.org/2009/04/personal-medical-coach-wanted/comment-page-1/#comment-81 Simone Tue, 02 Feb 2010 20:09:23 +0000 http://bulletpointblogger.wordpress.com/?p=27#comment-81 I am in the process of starting a home based service such as this. An overall patient advocate and diagnosis consultant/coach. I would like to speak with you. I am in the process of starting a home based service such as this. An overall patient advocate and diagnosis consultant/coach. I would like to speak with you.

]]> Comment on "You Can't Have That or You'd Be Dead By Now" by Sharon http://takeusseriously.org/2009/10/you-cant-have-that-or-youd-be-dead-by-now/comment-page-1/#comment-73 Sharon Fri, 27 Nov 2009 15:25:26 +0000 http://www.eruditebyte.com/bulletpointblog/?p=76#comment-73 Before a colonoscopy the DR. says to you "Oh great, they always give me the hardest patients to do." Before a colonoscopy the DR. says to you “Oh great, they always give me the hardest patients to do.”

]]> Comment on Personal Medical Coach Wanted by Dr. Joseph http://takeusseriously.org/2009/04/personal-medical-coach-wanted/comment-page-1/#comment-69 Dr. Joseph Wed, 04 Nov 2009 23:09:01 +0000 http://bulletpointblogger.wordpress.com/?p=27#comment-69 I would be interested to hear what has happened to you and see if I can help. Dr. Joseph Family Practice I would be interested to hear what has happened to you and see if I can help.

Dr. Joseph
Family Practice

]]> Comment on 10 Reasons Doctors Don’t Take Undiagnosed Patients Seriously by X Endurance http://takeusseriously.org/2009/05/10-reasons-doctors-dont-take-undiagnosed-patients-seriously/comment-page-1/#comment-27 X Endurance Thu, 24 Sep 2009 17:37:24 +0000 http://bulletpointblog.com/?p=41#comment-27 I think #8 is the most prevalent reason. Malpractice suits based on a doctor's performance, or lack thereof, are too common these days. I think #8 is the most prevalent reason. Malpractice suits based on a doctor’s performance, or lack thereof, are too common these days.

]]> Comment on Where is the Medical Curiosity? 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

]]> Comment on Where is the Medical Curiosity? 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

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