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Some examples would be:

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Returns the domain name your application is running on:

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Tracy, Thanks for the info. Will definitely check out.

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Tracy,

Thank you for the info. Will check these out.

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Jeanne, have you read the book by Sally Pacholok and Jeffrey Stuart, “Could It Be B12? An Epidemic of Misdiagnosis”? They are health professionals (RN and DO), Sally discovered she had pernicious anemia quite by accident while in nursing school. Perhaps you could join forces with them as they have made it their mission to educate doctors and the public. You may be able to get in touch with them by contacting the publisher of the book, the info is in one of the inside cover pages.

Early this year a movie was released about Sally’s life (titled “Sally Pacholok”, IMDb shows 4 stars for it), but I don’t think it is in wide distribution. If that movie got the level of attention that Erin Brockovich did, it would make a huge difference in the level of awareness of this devastating problem.

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Tracy,

No, I haven’t read the book, but will. I’m afraid I’ve gotten side-tracked by quite a few of those comorbid disorders I mentioned, after my B12D was finally diagnosed and treated. But I continue to feel very much alone with the management of my B12D. I’ve lived with the illness and studied my own course long enough to know that I function best with a serum B12 level in the high normal range. Only one of my care providers has had the experience and knowledge to understand why that is the case, while others have consistently sought to debate the issue with me. It’s quite tiresome. I also have Vitamin D Deficiency, and under-treatment was, again, an issue. I have Celiac Disease, and still have to be ever-vigilant with my oral medications in order to maintain the necessary strict gluten free diet. I’ve accumulated a number of entirely unexpected diagnoses over recent years. I have been fortunate, so far, in that all my medical problems are fairly easily managed. I have not been fortunate, in that signs and symptoms of each medical problem presented and worsened, just to be ignored until an acute event occurred. I trained under Preventive Medicine and Continuing Care models. Acute medical events are best avoided. Current standards encourage them.

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Jeanne,

Good to hear you are managing your medical problems, you are fortunate. I am disabled as a result of my very late B12D diagnosis. And I’m covered by the largest HMO in the western US, you’d think they’d know better! Just two years ago I was a very active and athletic 56 year old woman. Now I must use crutches or wheelchair outside the house and feel unwell all of the time. I have not been able to find or get a referral to a doctor within that HMO system who knows anything about B12D or PA. The doctors I’ve seen just want to hand out powerful scary drugs for my pain. Most meds I have been unable to tolerate as the PA has made my body hypersensitive. Why couldn’t they have figured out what was wrong before all this happened? I had a number of visits with several different doctors, I kept telling them something was wrong and my symptoms, but none of them figured it out. The state in which I live has such a low cap on medical malpractice awards it isn’t even worth pursuing a lawsuit, it’s even difficult to find lawyers who will touch it. A multi-million dollar lawsuit might have grabbed the HMO’s attention (and the headlines) and perhaps resulted in process improvements and more doctor awareness.

I agree, current medical practice is to wait for something catastrophic to happen rather than being proactive and figure out what is starting to go wrong. I think doctors in the 1950s were much more aware of B12D than the doctors today. To top it off, there are drugs often prescribed or available OTC that cause depletion of B12 resulting in increasing numbers of people at risk for serious, permanent neurological damage. Meanwhile, doctors continue to hand out antidepressants like candy.

Other issues with the current situation is B12 is not normally tested by traditional doctors, and the currently accepted normal cutoff is far too low. I think that a B12 test ought to become a standard part of the CBC test as we cannot rely on an elevated MCV to flag a potential deficiency (folic acid enrichment of flour masks this symptom). And as Sally mentions in her book, a B12 level of 200 – 450 pg/mL is the gray area where neurological damage is known to occur, so the lower cutoff needs to be raised to at least 400 pg/mL, at my HMO it is currently 200 pg/mL. When my B12 was finally tested it was 196, barely below the minimum, and I was in terrible shape neurologically by then. There does seem to be a wide variation in symptoms vs. B12 level among people so improvements in analytic test procedures as well as allowing physicians to treat by symptoms not just the numbers are also sorely needed.

Hope to see you on the FB or the PAS message boards!

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