I'm reading through "The B12 Deficiency Survival Handbook." Lots of information! Well done, overall.
But in "Chapter 4: The Diagnosis (...)", on page 70 of my copy it states, "Step 3: Ask your patient to grade his/her symptoms in the questionnaire (you can download here, print it and give to your patients whenever it's needed). It's a physical book, so I can't click on the link! Does anyone know which fatigue questionnaire this refers to?
Thanks in advance for any insight into this.
Marcia
(CFS for many decades)
Written by
protolawn
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i haven't read the book and really should. Because my hope is that the book explains that CFS can be but not always be an undiagnosed issue.
My experience with CFS is that I was diagnosed but really had a severe yet unusual problem insulin resistance all these years. Eliminating sugar solved it. My neighbor also diagnosed with CFS ended up in the end having MD. I'm not saying this is the case with all CFS; but my idea of a diagnosis that didn't actually scientifically nail down the cause led me to believe I was not yet diagnosed. I had to wait 20+ years to figure out what the real cause was (insulin resistance). So I say, those with CFS should learn all they can about it from good sources like this book, but don't stop there. Keep looking for an answer. And... I. found the answer... no doc did. so people should get the help of docs to rule things out when they can, but do what can be done in addition to that to get to the root of the issue. Strive for an answer. Until I found the answer, it was a lot of just coping with it, it took a lot of just patiently coping, then investigating when I could. I believe I got lucky enough to be able to pinpoint it. I think in my friends case, his condition had to progress to a state where the MD could be diagnosed. CFS is real, but don't just rely on that one diagnosis.
All in all, everyone's CFS journey is different so I empathize still with those who struggle and am glad to see that there is research around it. I hope they continue to do more and more research on CFS. It was not fun to get told I was nuts for having it by docs and others. Hey, but when I got told that, I just said, then what do I have???? lol. Throw it back at them. Of course, then they just say, well, it's just all in your head. That's when I started looking for answers myself.
yes. so in my case I felt like it was a way for them to close the doors on an expensive endeavor to close my case.
I'm in IT and believe that IT could be used to help diagnose. There are efforts to do this but they are doing it ALL wrong. I believe it could be done and it could help cases like this... a missed b12 deficiency or what not. For now, it's left to the overwhelmed and burned out docs or the docs who are just in the unmotivating systems to solve the answer. This system could give them a list of things to test instead of leaving it up to the human brain to remember or research (which no doc has time for). It could also consolidate resources like all the articles posted by PAS, sleepybunny, NIH and so on, then vet and summarize the info to provide a concise guide on diagnosis and treatment as well as identify what remains on the list of things that need to be researched and uncovered. these apps that docs use such as Uptime, and merc are all too narrow in scope. funny thing is my aunt that is a PA (physicians assistant) bragged about getting the right tests the first time and threw it at me like I was an idiot. But she said the high MMA was due to b12 yet folate was not tested. Cracks me up. This demonstrates the limits of the human diagnostics and the ego, emotions, time and all the other constraints that limit this. I don't believe it should be just software alone, but I believe the software could be used to help the docs. We would still have the problem of docs not willing to do tests because of the expense (due to limits put on them by admin/insurance). But at least it would give them a better tool.
Now there are dang good diagnosticians out there. but they are few and hard to find and typically don't know how to build a practice that would foster the best use of their talents. I wish I could have the time to start a business to start a functional medicine clinic that ACTUALLY focused on nutrition for many issues, not just b12 and just darn good diagnostics. I know there are docs just as frustrated by the system as us and they would flourish.
and now i'm ranting... I guess dreaming about what could be and should just make it happen instead of whining about it.
All in all, my comments about CFS/Fibro are to encourage people to keep looking for answers. There is hope but it may take time.
I am *so* with you on most of your rant, B12life! *** You mentioned the term diagnostician, and for some reason it made me think of this book: "Hospital Station" by James White. It's from 1962, and is about a hospital in space, where the patients are from all sorts of different alien races. If you like science fiction, you'd love this one.
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