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Hurt All Over - New York Times

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Hurt All Over

New York Times

The list includes hepatitis B and C; Lyme disease; Sjogren's syndrome (which affects the glands that produce tears and saliva); lupus and other diseases of the connective tissues; HIV; thyroid disease; celiac disease (which affects the digestive system ...

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"After the positive test two years earlier, she gave up pasta and bread for a month or so. But she didn

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We don't know what really transpired between her and the first set of doctors. We don't know if they recommended a biopsy or not, did she follow thru with it or bag it, and what would the doctors have said if the biopsy was negative though the blood tests positive - which we do see people here in the comment threads talking about. There was a poster who wrote up her attendance at a doctor's seminar this year, where they said the biopsies can be done wrong because they don't take up enough samples. And doctors here in the U.S. are just not going to do anything Out of Sequence because they claim the insurance industry will not reimburse them unless they find out certain things to rationalize the next test. We don't know if and what she was given or told for dietary advice, nor how she mentally approaches her own research on how to seek information.

The internet has changed how information about gluten free and cross contamination is more than just giving up bread and pasta for a month.

However, given her symptoms, appearance, history, AND the positive blood test(s), it is pretty gobsmacking.

It points to a lack of follow- up we have here in this country. Plus, once you are put in the "it's just fibromyalgia" category, which is doctorese for "head case," (notice how you never see a man diagnosed with fibro) you are always looked upon as some sort of attention seeking or drug seeking time waster as a patient.

I have had no doctor acknowledge that I could be a celiac, I'm not "officially" gluten intolerant, either, and I'm actually lucky to have a current PCP who humors me on the stated fact that I do not and will not be ever eating gluten again, irregardless of any negative test results. Of course, he's seen all my tests that showed the damage, including the one with the brain scan and the "bright spots", and seen the dramatic improvement in neurological symptoms that happened when I went on a gluten free diet.

I didn't really have a choice, I could continue dying slowly while 'waiting for Godot,' or I could just eat as I had to do to feel better.

From the old HMO's standpoint, this was a statistical win because they got rid of a patient with health problems (that they wouldn't diagnose) and they can claim their current patients/customers are living healthy lifestyles and are "healthier"(aka cheaper to maintain) because of it. Those idiots tried to put me on steroids for chronic asthma, while denying, to my face, that I had my other auto immune diseases that were causing the arthritis. This is what is wrong with American "medicine," it's a constant shuffle as these insurance companies keep shuffling patients around.

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We don't know what really transpired between her and the first set of doctors. We don't know if they recommended a biopsy or not, did she follow thru with it or bag it, and what would the doctors have said if the biopsy was negative though the blood tests positive - which we do see people here in the comment threads talking about. There was a poster who wrote up her attendance at a doctor's seminar this year, where they said the biopsies can be done wrong because they don't take up enough samples. And doctors here in the U.S. are just not going to do anything Out of Sequence because they claim the insurance industry will not reimburse them unless they find out certain things to rationalize the next test. We don't know if and what she was given or told for dietary advice, nor how she mentally approaches her own research on how to seek information.

The internet has changed how information about gluten free and cross contamination is more than just giving up bread and pasta for a month.

However, given her symptoms, appearance, history, AND the positive blood test(s), it is pretty gobsmacking.

It points to a lack of follow- up we have here in this country. Plus, once you are put in the "it's just fibromyalgia" category, which is doctorese for "head case," (notice how you never see a man diagnosed with fibro) you are always looked upon as some sort of attention seeking or drug seeking time waster as a patient.

I have had no doctor acknowledge that I could be a celiac, I'm not "officially" gluten intolerant, either, and I'm actually lucky to have a current PCP who humors me on the stated fact that I do not and will not be ever eating gluten again, irregardless of any negative test results. Of course, he's seen all my tests that showed the damage, including the one with the brain scan and the "bright spots", and seen the dramatic improvement in neurological symptoms that happened when I went on a gluten free diet.

I didn't really have a choice, I could continue dying slowly while 'waiting for Godot,' or I could just eat as I had to do to feel better.

From the old HMO's standpoint, this was a statistical win because they got rid of a patient with health problems (that they wouldn't diagnose) and they can claim their current patients/customers are living healthy lifestyles and are "healthier"(aka cheaper to maintain) because of it. Those idiots tried to put me on steroids for chronic asthma, while denying, to my face, that I had my other auto immune diseases that were causing the arthritis. This is what is wrong with American "medicine," it's a constant shuffle as these insurance companies keep shuffling patients around.

I cannot add much except: hear ! hear!

What a fiasco it was for me to get DXed...YEARS of misdiagnoses and going from one doctor to the next with no answers. I figured it out myself !! and then, the doctor said "OH, yes........." :blink:

My husband read this article in the Times last month and said "Babe, this is YOU!"

I complained of hurting all over ---even my clothes hurt to wear them. My skin feels like it is on fire. My bones, joints, tendons, tissues HURT. I live in agonizing pain. Since 2008 I have been "burning", but the pain, along with the "IBS" --(another wastebasket DX)--started in the 90's.

Fibromyalgia, my as$. <_< I had DOZENS of horrible symptoms, and losing 90 lbs. and developing anemias, a loss of major muscle mass, insomnia, miscarriages, migraine, etc...still did not give even my (former) GI a clue?? I was given dozens of DRUGS to appease me (I did not take them) and was looked upon as being "stressed" and "anxious" and "menopausal". If I had not fought for my life, I do not know what would have become of me! My new GI doctor is just appalled at what happened to me.

I was stunned to read that two positive blood tests were done and "false positives are not unusual"...since when??? Not according to the people on here.... :unsure:

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