Moral to story: NEVER GIVE UP!

Discussion in 'Fibromyalgia Main Forum' started by victoria, Oct 7, 2009.

  1. victoria

    victoria New Member

    I think I posted here, somewhere, a while back about a friend, 53 yo, who was steadily going downhill for the past 4 years, especially with fatigue the past 4-6 months to where she could barely get out of bed. Her symptoms will sound very familiar to many here in many ways:
    --hitting the 'wall' with extreme overall fatigue after anywhere from 5 minutes to a couple of hours of mild activity,
    --uncontrolled hypertension,
    --mental fogginess,
    --achiness all over,
    --strange bowels,
    --anxiety that she described as 'physical' tho doctors weren't listening
    --and a few other symptoms I can't think of right now.

    After seeing many doctors, and many blind avenues, she figured out she almost certainly had a pheochromocytoma (abbreviated as "pheo") - it's a tumor normally on the adrenal gland that produces its own catecholamines, and surgery can be risky as a result. (She had medical training btw, tho not an MD.)

    Pheos are very rare, but she did have a positive definitive urine test for it - the catecholamines are tested -- her levels were about 3-4X normal levels and the info about pheos explained all her symptoms,

    Well, after that positive urinalysis for the pheo, she was referred to the top endocrinologist in Mexico City. He and his staff wanted to repeat the urinalysis as they felt the hypertension drugs she'd had to take could produce the abnormal urine test, despite the info to the contrary she'd read on AMA type sites; in the meantime they put her through a whole bunch of tests and scanned her whole body.

    Unexpectedly they found a liver tumor. While they were waiting for the return of the urine test (takes 2 weeks) and others, they removed the tumor - luckily it was small and on the edge, & easily removed.

    Wait there's more...

    All results of her tests came back negative except one, which was weird... The liver tumor was benign, but, it turned out to be of all things...

    ... Tuberculosis!!!!!!

    They didn't find it anywhere else in her body, nobody had ever suspected it, and she was negative on the scratch test and any other TB test they performed. Go figure.

    Her urine test also now came back normal (no excess catecholamines like the first time), it apparently was actually due to the hypertension meds she was taking even tho the info online at the 'regular' medical sites said they wouldn't interfere with results! I guess there are always exceptions to the 'rules'.

    So, now she is not one in a million with a pheo but about 1 in.... 1,000,000,000,000,000,000,000 -??
    -- as they could not find any case write-up about anyone else ever having TB on (in?) the liver! In fact, they're going to write up her case and submit it to a journal(!)

    The other good news is that since it wasn't in her lungs, she's never been infectious, TG! Altho she will of course be on abx for the next 1-2 months.

    MORAL: To me, I think the bottom line here as far as lesson-learning is, NEVER GIVE UP!!!! So many of us have found answers, at least partially, by pursuing whatever leads are presented, like mycoplasma, lyme, hypercoagulation, etc.

    all the best,

    PS: I honestly think that if she'd been in the states where she herself would not have been able to order and pay (a lot less) for lab tests, it would never have been found and she would've continued to be written off as a 'mental' case, hypochondriac, etc. or even given the dx of FM.

    All the doctors before she took that 1st urinalysis, faulty as it ended up being (tho no test is 100% and there are often other factors), were patting her on the shoulder and saying things like, "Well, you know, you're getting older..." etc and that she would just have to live with it.

    [This Message was Edited on 10/07/2009]

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