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-   -   When is it fibro? (https://www.neurotalk.org/fibromyalgia-and-chronic-fatigue/75773-fibro.html)

cyclelops 01-31-2009 08:32 PM

When is it fibro?
 
I am going to post this because I am alarmed at the number of people 'diagnosed' with Fibro. If I endure wrath, fine. I did my part. First, let me say, I am a retired medical professional. Let me also say, I had the diagnosis of Fibro.

Then several things happened.

I got a case of Lyme Disease and it was caught acutely, undertreated and shoved under the rug. End of this issue. However, remember, I had 'fibro' first.

Then I had a minor salivary gland biopsy done, on my own, by an oral surgeon and Mayo read it and it was consistent with Sjogren's.

Then many years later, I had an autonomic nervous system battery run and flunked it. That lead to skin biopsies to measure nerve fiber density. That came back abnormal, leading to a diagnosis of small fiber neuropathy, idiopathic.

High ANA here and there. Low C4 once. Abnormal PET scan, abnormal CT scan. A few bone fractures and torn ligaments, abnormal EGD and manometry.

Then recently, an abnormal CD4+/CD8+ ratio, with excessive T helper cells. This will likely yield some more info, which could be lymphoma or sarcoidosis.

Until a lot of tests are done, usually over a period of years, a diagnosis of fibro is incomplete. The trigger points are insertions of ligaments into bone....they are sore in a lot of people, especially in people with seronegative spondyloarthropathies.

Please for your own health, research, research, research and ask for tests that appear to be indicated.

I believe you have illness and pain and that this illness and pain could possibly one of a hundred or more entities that simply were NOT looked for due to laziness, cheapness of the system, or some other bias.

Doody 02-01-2009 03:04 PM

Thank you.

I'm afraid I wouldn't know what tests to ask for!

I was reading just a bit about seronegative spondyloarthropathies. Very interesting. I was surprised to see the involvement of the eyes. I can't remember what's wrong with mine, but I have to use 2 different eye drops.

Jaspar 02-01-2009 06:52 PM

That's the problem with all kinds of illnesses from chronic fatigue to schizophrenia that are diagnosed based on a set of symptoms rather than on what is causing the set of symptoms. A very good book on the topic is which includes tests for ruling things out when diagnosed with fibromyalgia, and chronic fatigue are "Your Symptoms are Real" by Benjamin Natelson.

I agree about the testing.

The diagnosis is a step in the right direction from just a few years ago... after all, the same set of symptoms used be called "in your head", hypochondria, laziness, mental illness, etc. At least now they call it something medical and treat it as "it's real, and medical, but we don't yet know what it is". Of course, if they ran tests they might figure out what is causing at least some of the cases.

Peter B 02-05-2009 01:56 AM

Quote:

Originally Posted by cyclelops (Post 457777)


Please for your own health, research, research, research and ask for tests that appear to be indicated.

I believe you have illness and pain and that this illness and pain could possibly one of a hundred or more entities that simply were NOT looked for due to laziness, cheapness of the system, or some other bias.

For some of the reasons that tests and proper diagnosis may not be done, primarily to avoid huge costs, have a read of this article by my daughter.
http://www.ahummingbirdsguide.com/wh...itsfromcfs.htm


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