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  • Test negative, symptom positive, diagnosis brushed off.

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    Old 05-27-2008, 01:58 PM   #1
    moonkatz's Avatar
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    Test negative, symptom positive, diagnosis brushed off.

    Hi I'm new to the boards. You'll have to forgive me if I ramble, I seriously need to dump all this and get some guidance and feedback.
    I *have* read the stickies. I've also read through several other recent high traffic posts.

    Bit about me: 34 y/o, female, Caucasian with mixed European heritage, generally good health, healthy weight, mild allergic/reactive asthma (dust, smoke, and high atmospheric molds set me off, as does heavy physical exertion- prolonged regular exposure to second hand smoke as a child), three kids but with some fetal losses (in order: miscarriage in second trimester '96, twins after fertility in 98, miscarriage (bad egg?) 2000, single baby 2002, and then miscarriage x 2 2003/2005). I've since put a stop to the whole fertility problems by abstinence and birth control measures (noted below)- never my intent to be a baby factory (LOL! no really, three boys, was only hoping the 4th would be a girl). Not currently employed (stay at home mommy/homemaker, and did hospice for my dad who passed away in March). Recently divorced, (15 year abusive situation, I left in early '06) and dating a wonderful man now since November. (Not much dating otherwise, generally I'm a nerd and a geek and a bit of a shy violet.) I stay active and fit by volunteering with a local fire department as an EMT-B/firefighter when I'm available (read as: NOT with kids in tow or while I'm feeling compromised.) My personal call volume is roughly 10 emergency calls a month, though I try to make as many as possible (I'm not overly stressed by physical or emotional strain.) I chase my kids about endlessly- they also keep me fit and entertained. No regular medication use save for as needed albuterol rescue inhaler, daily birth control pills and occasional over the counter pain and allergy remedies, I hate medication and try to avoid it if at all possible. Chicken pox as a child, moderate case. No other notable past health history. Usually try to meditate for pain therapy. Beadwork, crochet, photography and photo editing, etc. Great for a while till my hands cramp up .
    So that's basically me. Helps to know I'm sure.

    For the past 10+ years I've had symptoms which are consistent with lupus. I have a first cousin who is 25 years my elder, who started with the same symptoms around the same age as me. She was first diagnosed with Fibro, then Lupus, now has a dx of Mixed Connective Tissue Disease. Other family history of arthritis, rheumatoid arthritis, other rheumatic issues.

    My more notable symptoms became more prevalent after child birth, but I can trace them back to my first miscarriage. Have had asthma and allergies all my life. Major emotional traumas at age 4 and 8, won't go into it here, but could be considered a trigger? Allergies became considerably more severe during twin pregnancy (1997)- had an anaphylactic reaction to banana, something I'd never been "allergic" to before (really ripe bananas caused mild oral itching before that point, but I never thought much of it). Now I can't even peel a banana for my kids without gloves (non-latex preferred these days). Even the smell of an overripe banana in the house gives me headaches.

    Went through testing (when I was still insured)- tests were around 2004 through 2006 (mostly military doctors, and finally saw a rheumy who did NOT do blood work.) Any blood work they did (all which was sent away to another military base for testing) did not prompt any diagnosis, and I was offered antidepressants which I declined. I have a feeling their unspoken diagnosis was 'crazy woman wanting attention' which I'm sure you've all heard. The Rheumy I saw last finally gave a dx of 'Chronic Pain Syndrome' and wouldn't hear of doing blood work after she found out I'd had a back injury in 1995 which went untreated (slipped disc, chronic sciatica since then sporadically). I'm unsatisfied with her dx, and feel deep down something more is going on. NOT insured now or I'd be pursuing another doctor's opinion.

    When I have a 'flare' up of symptoms, I get the following symptoms. Usually most of these symptoms occur concurrently, but some of them linger or occur on their own without a major flare up:
    oral ulcers
    intestinal inconsistences (very loose bowel intermittent with constipation, gut cramping, upset stomach, lots of gas and belching- not very attractive at all)
    facial rash- redness in a butterfly pattern either side of my nose, from just below eye area to below crease of my mouth, scaly flakes, deep scarring from the flaking which for all I can tell resembles scalp dandruff
    flaking rash around opening of my ears and around lobes of my ears
    cystic acne (only occurs with flare ups, usually is my marker to tell me I'm about to go through a few weeks of hell)
    joint pain all over
    muscular pain
    bone pain? (I can't even begin to tell where it comes from, it just hurts deep)
    sinus trouble
    increased asthma issues
    chest pain and tightening
    pleuritic pain
    joints popping with normal movement
    ribs and sternum popping (this is MOST disconcerting!!! first time it happened, my chest got very tight for a few hours before it popped giving relief, I thought for all the world that I was having a cardiac issue!)
    food sensitivity (things I can normally eat, ie: carrots suddenly cause allergic itching and swelling or intestinal upset - note I have been through several rounds of allergy testing and do not test "allergic" to everything I have reactions to... the list of allergens I have tested positive to is extensive, basically if I breathe or eat, I'm toast )
    memory loss
    spacey behavior (I go absolutely loopy, can't concentrate)
    numbness in extremities
    loss of muscle control (dropping things, can't feel the pedals of my car very well, bumping into door frames walking through the house)
    random bruising without sufficient trauma that I can recall
    nerve pain
    loss of appetite
    narcoleptic moments? (simply must nap NOW, I get a few moments warning but I do have to sleep immediately- usually pull over to the side of the road if driving, or go find a place to sit with my hat pulled down if I'm not home. I've passed out at my desk a few times.)
    bouts of sheer exhaustion- I sit down, within a few moments I fall asleep. I call my derrière my 'snooze button' when this occurs. I resort to standing most any place I go or have to wait, in order to avoid this embarrassment.
    dry eyes
    dry mouth
    sore throat (consistent with sinus drainage)
    sun sensitivity
    restless legs (uncontrollable urge to bounce my leg/legs while sitting)
    twitching muscles (jerking arms, neck, legs) during sleep- enough to wake me

    I think I can wrap the list up there (I'm not transferring them off a symptom list, I really do get this messed up, it's maddening!). I've been keeping track of the symptoms since around 2002 or so when my cousin called my attention to the similarities of her progression and my mysterious malaise that I was dealing with. Most notably she referenced the joint pain, ulcers, face rash, migraines, food sensitivities, fatigue and painful periods. Hearing her experience gave me hope. It wasn't all in my head!

    I noticed SOME migraine relief when I went on hormone birth control without a placebo week (stabilizing my hormones?). Didn't get the periods either (grin). Had to discontinue the BC patch due to allergic/sensitivity reaction to the adhesive- broke out in massive hives in thigh and lower abdominal area (patch was on arm, and I did discover it was the patch and not something else.) Constant use of 'the pill' has kept the worst of the hormonal migraines at bay but I still get tension headaches, sinus headaches, stress headaches, migraines of a different sort, and cluster headaches. Before the pill, I would get the above flare up symptoms monthly but not in the same pattern as my period which was very sporadic, long and very painful. Three years of taking the pill daily with no placebo seems to be helpful for at least the migraines (I have had three or four very light and relatively painless periods during/despite this course of therapy. My doctor recommends three months of pills with a week of placebo, I have ignored her advice on this as the migraines when I'm off it are tremendous, unpredictable, and disabling.)

    My worst flare up was before my separation, the most stressful time of my life I lost 40 pounds in 3 months, had long term weight loss trouble (couldn't keep the weight ON without supplementing my diet with extra calories, now I regularly drink a diet-shake just as a snack between big meals and am able to maintain a steady healthy weight.) I hurt so badly during that period of time that I questioned going on. Duty to my children was stronger than the illness. Doctors sided with my ex: I was crazy, needed mood altering drugs, the rest would fall into place. (docs: you hurt because you're sad. me: I'm sad because I hurt and no one will listen- fix the problem, no sad. Um, yeah... Perfectly sane here, not stressed out at all now and I'm still flaring up at random.) Midway through this, my ex attempted to drown me- so in addition to all the malaise and weight loss I then had to fight off walking pneumonia without help, move household 2000 miles without help, and try to keep my wits about me. My only thought: it was my kids that kept me going- seriously how does a sick woman lift a washing machine into a moving truck otherwise?

    So... big question: How can doctors discount the symptoms and only rely on a simple and unreliable blood test for diagnosis? I tested as not having lupus according to the ANA work, even during a flare. I could not get the military docs to do further testing due to their silly rules regarding efficient cost management (apparently- they never would do an MRI on my back either even though it was clear I had a disc issue, reasoning that they could take 100 symptomless people, test them, and 80% would show back issues. Point is, I had symptoms. I warranted the tests!) The rheumy they sent me to in private sector listened to my symptoms and history and jumped straight to the least innocuous diagnosis without doing any blood work at all. At that point, I gave up on doctors. No MRI's at all. CT scan in 2003 showed abnormalities (eventually ruled to be my 9 earrings, which the tech failed to have me remove) and two more CT scans in 2006 showed nothing significant. It did, however, prove that I do indeed HAVE A BRAIN! It's in there, all wrinkled and gray and lovely.

    Is it lupus?

    I'd believed my doc in 2006. Now I'm questioning again.

    It is not something I think about constantly. I don't read about it online (except at the moment.) It's only a bother when it's flaring up with everything at once. Then, I feel totally useless. I'm afraid to even apply for jobs, know I'd get fired or laid off for bad performance when I do get a flare. Per the Chronic (Myofascial) Pain Syndrome diagnosis, I became more active to try and limit the formation of new trigger points, even though I hurt like heck afterward sometimes (simply directing traffic for an hour can be very taxing, and cause a flare up.) I try to ignore it, but when I start dropping things and falling asleep standing up, it's hard to ignore. Try to explain to your family and friends that you're not lazy, you're sick, and that doctors won't listen and there's nothing you can do about it- I'm lucky to have an understanding family, and hopefully my current (wonderful) boyfriend can accept that I'll have my moments without worrying that it'll be an issue in our relationship. But how can I obtain and retain a job if I can't get a proper diagnosis?

    I don't know what to do. I don't want to go on disability. I want a job, a life, I like being a productive member of society. I've accepted that I've got limitations and that I'll probably deal with this (whatever this is) for the rest of my life. I ignore the little nagging issues and push myself ever forward. I can't control when it flares, or how badly it will flare, but when I'm normal I'm NORMAL, I feel great and fine and like tackling the world (or at least North Texas.) I've minimal pain on a regular basis, it's there but I've learned to meditate (not medicate) past it. Sure my hands get stiff and I have to keep my sugars up (tend to be a little hypoglycemic, though never diagnosed) but I can and do fight fire and work hard with the big boys. I just can't do it every day. I don't want a diagnosis to go waving around like it's a trophy. I just want to know what 'it' is so I can tell people when they ask, instead of having to say 'well I get sick sometimes, blahblahblah, no really I'm not lazy or crazy'.

    This week I'm hit heavy. Facial scaling and rash. Popping sternum and ribs. Leg jitters. Dropping things. Allergies a mess. Eyes dry (contacts are sticking like mad!) Chest tightness/pleuritic pain. Numbness my limbs (pins and needles, icy cold feeling spreading from core to extremities). And of course, digestive troubles. The rest falls into place either days ago or possibly in the next few days. No oral ulcers yet but they're bound to happen, I can feel the precursory bumps of them forming now. I'm ticked off at myself for 'being weak'. Would love to go cut a few dead trees in the yard but afraid to handle the chain saw right now (sigh) maybe next week I'll resume normalcy?

    Am I nuts? Does this sound like lupus? I don't know whether to insist on more tests or just wait and see what happens. I can't really afford anything more at this point anyway. Am I doing myself a disservice to try and ignore it and work around it without treatment? From my reading, it looks as though there's no cure or real treatment available anyway, although one can lessen the chances of later organ damage with early interventions. I don't want a retrospective diagnosis when it's too late to fix or prevent. But I don't want a label now that defines how I'll be treated by society (disabled). Thoughts, advice, input, grumps, taunts, and feedback of any sort is welcome.

    If you read through the mess this far, thanks a million.
    I've kept it bottled in for too long.

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    andiemoose (05-04-2012)
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    Old 05-27-2008, 03:06 PM   #2
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    Re: Test negative, symptom positive, diagnosis brushed off.

    You definitely have something autoimmune going on. First of all, you can't dismiss lupus, simply because your ANA was negative. There is such a thing as ANA negative lupus. That being said, many of your symptoms are synonymous with lupus, so you should ask to have an anti DS-DNA blood test run. It doesn't always show positive, but it is a good indicator. Second, your multiple miscarriages are screaming out for you to be tested for antiphospholipid antibody syndrome (APLS). That would be the Lupus Anticoagulant test(LA) and the anticardiolipin antibodies test (ACA). APLS does overlap symptoms with lupus. I happen to have both APLS and systemic lupus, so I'm speaking from personal experience.

    I don't know what to tell you if you feel that you can't ask for more testing. Do you think they'd give you a hard time if you'd just want to ask for these three different bloodtests to be run? Worst case scenario...what if you had to pay for the these two tests out of pocket? At least you'd have your answer.

    What's most important is that you'd finally have the proper diagnosis/medication so you can then move forward. What do you think?

    Last edited by life_is_good; 05-27-2008 at 03:11 PM.

    Old 05-27-2008, 04:10 PM   #3
    moonkatz's Avatar
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    Re: Test negative, symptom positive, diagnosis brushed off.

    I'm no longer on any sort of medical insurance coverage since my divorce- everything is out of pocket at this point, and my pockets are turned out with moth-holes and lint as the only features discernible (and the collectors would be happy to get the lint!). Kids are covered but I'm not. I'm kinda trying to wing it on my own, as far as managing my own health matters (not advisable, just necessary right now.) If I could afford a coke or snicker's bar once a week, maybe I wouldn't be stressed and flaring....

    This latest flare up has my knickers in a twist. BF is confused, he's never been around me during a flare up and I didn't (out of fear of judgment) explain all of this when we first started dating. I can't explain it, really, since there's no concrete diagnosis! Most of ex husband's abuse was a 'reaction' to my 'laziness' and berating me for faking. That's no excuse for how I was treated but it certainly didn't help the relationship or help me heal! BF is thankfully nothing like my ex.

    I tried while insured to get everything taken care of but kept getting stone-walled at every turn. Then, was symptom free for a good long while and just figured as long as I stayed active and minimized stress, I'd be ok. I guess I just had a lucky streak of good days. The past few months hasn't been easy on me and I've kind of let nutrition and activity levels drop, and am apparently suffering the consequences (?)

    I don't qualify for disability even if I could or wanted to claim it or utilize a claim to it to get tested - not enough work history for SSI (son is on it for his disabilities, so I've done my research). Kind of leery of even attempting that route due to my volunteer work (can just see someone screaming 'fraud!' even with the variable nature of the symptoms.) But I'll keep those tests in mind for when I do finally get insurance again. Fingers crossed I won't need anything medical while I'm scrambling to get a job and coverage (that's like which came first, the chicken or the egg... need coverage to be well enough to work, need work for the coverage, ack!!)

    Thanks again so much for the feedback and for reading. It's good to know I'm not imagining the similarities or unfounded in my concerns.

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    andiemoose (05-04-2012)
    Old 05-27-2008, 04:57 PM   #4
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    Re: Test negative, symptom positive, diagnosis brushed off.

    Moonkatz, welcome! Obviously, I'm just a patient, but just as "Life" wrote, your multiple miscarriages made antiphospholipid syndrome (APS) come to my mind, too. Is there ANYONE, say your Ob/GYN, who you can discuss APS with? I hope so.

    And your very dry eyes & mouth make Sjogren's syndrome come to my (untrained) mind. It can occur "standalone" or in conjunction with lupus. Anyway, the autoantibody seen the most often in Sjogren's is anti-Ro. FYI, anti-Ro is also seen in systemic lupus (SLE) and in the subacute cutaneous lupus (SCLE) variant. Thus if anti-Ro is found in bloodwork, further nuanced thinking & testing is needed, to sort thru SLE, SCLE & Sjogren's.

    Eye doctors can also Dx Sjogren's, using a variety of tests: Schirmer's (tests for dryness) & the Rose Bengal stain (looks for corneal pitting & scarring). But the one considered the most definitive is lip biopsy.

    Another pitfall in the anti-Ro group is that ANA results in people with anti-Ro can be misleading. It's thought that 30% or more of people with anti-Ro have a negative ANA, because anti-Ro seems to "mask" the ANA results in some people. Some doctors call for *only* the ANA test, then quit without ordering more specific autoantibody tests, causing them to miss the boat on their Ro-positive/ANA-negative patients.

    I'm aware of this because I fell into the SCLE subgroup that's positive for anti-Ro but negative for ANA. I baffled all my doctors for decades. Had horrendous GI problems, much like you describe, for 20+ years; urinary problems; anemia; weight & hair loss; fatigue; pain in joints & along long bones (shins & arms); sciatica; migraines; bizarre tingling; fogginess; etc.

    Then I started getting torso/arm rashes, nonscarring circular lesions with clear centers. My dermies (6 or so) stepped up to the plate & also failed on something considered basic by better doctors. They failed to call for the "best" tests = immune stain tests on deep punch skin samples.

    I finally went to a big-city teaching hospital rheumie & also a dermatopathologist. Then, finally, after many years, very quickly a Dx: SCLE, positive anti-Ro, negative ANA, no major organ involvement, met more than 4 of the ACR criteria. But luckily, Plaquenil has helped me tremendously, as has sun avoidance.

    I regale you with this () to alert you to the level of doctoring that's sometimes needed to get answers. Symptoms rise & fall in many people, which can make all manner of test results "iffy". But if you fall into one of the subgroups, it can be even harder to get answers.

    Another thing I realized, way late: in this area of medicine, your lifetime medical history can speak volumes to a savvy rheumie. So many of the things listed in the "sticky post" that contains "alternative criteria" were familiar to me---but only to my last (and currrent) rheumie. Right away, he saw my history as connectable dots.

    I hope you can get some help quickly, maybe via an OB/GYN or eye dr. Better yet, a rheumie who would agree to some sort of reduced & prolonged payment plan. Maybe you could get some names from a local support group, of doctors who will work out special plans with people.

    If anything here catches your eye, just you give a yell, OK? Meanwhile, I send my best wishes, Vee

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