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  • New and undiagnosed ... Labs!

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    Old 10-22-2015, 09:38 PM   #1
    alove1018
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    New and undiagnosed ... Labs!

    Hello all! I am new here and have been reading over the threads, it seems that my story is much like everyone else's. Joint pain, fatigue, chest pain and bizarre rashes going on a decade now. I've been to many small town doctors and have been told some laughable and sometimes offensive things. About a year ago I was talking to a health-conscious family member about a weird symptom I was having and she yelled at me that I needed to get serious and pursue a better doctor, she referred me to hers. I have now had my first appointment with my second rheumy and just got my labs back via a health portal. My ANA result was last in and I am looking for some help deciphering it. My follow- up appointment isn't until January so my rheumy said he'd call me to talk about my results. I have always seen ANA results written in a x:xxx format, so these results confuse me a bit.

    Component Standard Range Your Value
    Homogeneous Pattern 0 - 49 1/dil <50
    Speckled Pattern 0 - 49 1/dil 50
    Peripheral Pattern 0 - 49 1/dil <50
    ANA,Nucleolar pattern 0 - 49 1/dil <50


    Any input would be greatly appreciated. For a little background, other results that came in indicated some inflammation (raised sed rate, high CRP). My AB specificity panel came back with a smattering of numbers, the highest being RNP, but what are 'normal' values for those (SSA, SSB, Smith, JO-1, RNP, SCL-70...etc)? Should any number of those AB's be present in a 'normal' person? I have been told that I had a positive ANA and RNP in the past, although I was not told what the values/ patterns were. I'd like to be as prepared and educated as possible on my situation before my rheumy calls. He is a little hard to communicate with because he has a very heavy accent, I want to make sure I am asking the right questions. Also, at my first appointment with him last week, he didn't even have me change into a gown to give me a physical-he just sat at his computer and asked me a few questions. Is that normal? He is very busy and I'm told he is very good, but I have had some bad experiences and I guess I'm skeptical.

    Thanks- I'm glad to be here to receive support and to give it! :-)

     
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    Old 10-23-2015, 04:23 AM   #2
    VeeJ
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    Re: New and undiagnosed...Labs!

    Hi & welcome. I'm sorry you're struggling. We get that , so I'm glad you found us. Anyway... in the pattern section, I think labs often don't post an actual # if result is "in-range"; but if not, you'll see a #. Only place I see a # is speckled, where your value seems to be 50 (just above normal range of 0-49).

    I believe speckled pattern can be seen in multiple conditions, like lupus, Sjogren's, scleroderma, polymyositis, and rheumatoid arthritis, and mixed connective tissue disease (MCTD). But neither ANA level nor ANA pattern diagnose. Although they point to AI conditions (and some other conditions, too), those conditions have their own unique & separate diagnostic criteria.

    As for subtype ranges, labs vary & the tests themselves vary. So when ranges aren't listed, I honestly don't know how high values are flagged. Do you see any stars beside any of the subtypes, or a footnote, or the letter "H" for high? (My lab shows actual values in the main body with ranges in a footnote.)

    When anti-RNP is the ONLY positive subtype, I think that can suggest MCTD (Mixed Connective Tissue Disease) as a candidate, *if* symptoms fit. (But I don't think you can tell what's what without the darn ranges.)

    In what you wrote, I'm especially curious about "bizarre rashes". What do they look & feel like (color, itchiness, shape, do they scar, etc.)? Where are they? Have you figured out any possible triggers? (I ask b/c I had bizarre lesions for years that turned out to be a less-common form of lupus-specific rash, one my suburban GP's, rheums, and derms didn't know. I ended up at a teaching hospital, where rheum & skin specialist both knew IMMEDIATELY.)

    Re physical exam, I think specialists often don't do one until they decide one is really needed---may poke a few joints but not make you strip down if your initial labs don't have any crazy values. Then if further labs come back wildly off, that could change. (I'm skeptical about doctors, too, but I wouldn't worry about this, yet.) Looking forward to hearing more. Warm wishes, Vee

     
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    Old 10-23-2015, 11:13 AM   #3
    alove1018
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    Re: New and undiagnosed ... Labs!

    Veej,
    To start with I am a 30yo female...I'm blonde haired/ blue eyed and fair so I've always had sensitive skin and taken good care of it. I *mostly* stay out of the sun, and I use fragrance-free natural products on my hair and skin.
    The first rash I remember having was the summer I turned 17--my cousin's family invited me to their lake house, and I caved to peer pressure and stepped into a tanning bed. For less than 5 minutes. As soon as I got in, I started to feel itchy, and it got so bad in a matter of a few minutes I jumped out of the tanning bed like my skin was on fire and ran to the doctor. I developed a huge raised red rash across the trunk of my body and onto my arms and legs, it itched so bad that i drew blood in many places. They put me on steroids and it resolved in about two weeks.

    At 18 I started to develop what seemed like seasonal dandruff. Over the years it has come and gone, unresponsive to every dandruff product on the market, including prescriptions. My scalp develops these plaques of dry skin, mostly on the top/front part of my scalp, if I scratch them off, they bleed. My hair in this area has permanently thinned by half. When it gets really bad, it creeps down onto my forehead with these red blotches at the edge. It is really embarrassing.

    I also have a rash on my forearms that gets worse in the sun. It is blotchy and bumpy and it seems like the bumps are where the hair can't come through my skin. They are dry but not necessarily itchy. When this rash heals it leaves sheets of dry skin behind.

    This year, I've started to develop a weird reaction to heat. We have a wood burning fireplace and I can't get near it (to tend the fire) without the tops of my hands (only on the parts between knuckles and the back of my hand, where the hair grows) puffing up and turning red and it HURTS. Really, really bad. The only way to relieve the pain was to cover my hands in hydrocortisone cream and take ibuprofen. This also happened to the backs of my legs one day when i was standing in front of the fire to warm up.

    I also have a splotchy rash under the skin across my cheeks. This is new and it's worse after I get out of the shower or on days I feel so bad that I mostly stay in bed. I showed a picture of this rash to my first rheumy and she told me that i just have ruddy skin! Which of course, is not true. My skin is normally so even and pale that my parents used to pinch my cheeks to give me color, haha.

    I've also had many recurrent fungal? infections. They come-on fast, itch intensely and are painful. Over the years I've had dr.'s throw all kind of creams at me, some have shrugged their shoulders and said 'i don't know' and one has said fungal. Ive had them in my underarms, under breasts, on the back of one of my calves and on the hairline across the back of my head.

    I am really hoping that this rheumy takes action and puts me on something. I am not one for drugs, but my life is at a stand still and I turned 30 this year. I've tried overcoming this with nutrition and other lifestyle changes to no avail. I keep getting more sick every year and I just want my life back so badly.

    Do any of these skin issues sound familiar to you, Veej, or anyone else?

    :-/

     
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    Old 10-25-2015, 03:37 AM   #4
    VeeJ
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    Re: New and undiagnosed ... Labs!

    Good morning. I've had 3 different lupus-specific rashes, and one was key to my dx, so I'm always curious about rashes. I saw some interesting info about rashes in MCTD. (Not saying that's where you're headed, I couldn't know, but I was curious about lupus & possible lupus overlaps.) Some, which I marked with asterisks, seem the same, or very close, to what we read about the lupus rashes. Here's a quick rundown:
    • MCTD seems less well-documented than, say, lupus is. Further, most MCTD articles cite generic "skin problems" (not useful), some cite "lupus-like skin problems" (more helpful but still too fuzzy), and just a very few cite actual names/descriptions (the most helpful).
    • In MCTD, skin problems are most often the first symptoms to appear.
    • The most specific names & descriptions I saw: Raynaud's, swollen digits, alopecia (hair loss), red/brown patches over the knuckles, malar rash*, hyper-pigmentation with patches of hypo too, discoid lupus-like lesions* esp. on scalp, photosensitive rashes*, generalized erythema-like rashes, abnormal capillaries in nail folds, facial redness, painful nodules on elbows and hands.
    When you think about what MCTD is, an overlap syndrome, it's not really that surprising that there could be overlap with lupus skin problems.

    Also, there's a form of lupus called Discoid Lupus Erythematosus (DLE) that's considered "cutaneous", meaning it affects mainly skin with perhaps some fatigue & joint pain. In DLE, patients don't have the circulating autoantibodies seen in the more serious "systemic" forms. DLE lesions can scar, depigment, and cause permanent hair loss, so the cosmetic ramifications can be big.

    In the 10+ years you've had skin issues, have you seen a top-notch dermatologist or dermatopathologist? I'd look for one who works with AI's (as opposed to ones who specialize in cosmetic procedures), meaning you need someone PURELY MEDICAL. You could ask your rheum for names. (My rheum hand-picked my 9th derm. Superstar, way beyond the many suburban derms I'd seen.) A teaching hospital would be a great place to start, imo.

    Something else I learned: you can have a skin biopsy & naturally assume that it was done *properly*. During a 4-year span, I had two deep-punch biopsies locally that didn't yield answers. Well, dumb me. I later learned that step 2, immune stain tests, had been omitted. In lupus, that second step is essential as it can reveal linear bands of fluorescence that are considered virtually diagnostic. This test is called the Lupus Band Test (LBT), but I think there's a version that can similarly uncover certain MCTD rashes, based on finding *different* immunoglobulins pooled between the dermal and epidermal skin layers. The punch is deep & requires a few stiches, but the payoff can be huge.

    Other thoughts. To me, some of your skin problems sound photosensitive, common in lupus & lupus-like rashes. Also, has thyroid function been tested? (Rashes, pain, and fatigue can be seen in thyroid disorders, too.) Has psoriasis been considered? Primary alopecia? Finally, there's probably a chance that at least some of your skin problems are more ordinary, everyday things.

    In summary, skin diagnoses are an art. I've had GP's toss out "diagnoses" with great assurance, all totally wrong. In contrast, my 2nd rheum just turned my skin issues over to a skin specialist rather than pretending to know. That's what you want: division of labor! If this isn't what you're after, we'll just try again, OK? Meanwhile, sending warm wishes, sympathetically, Vee

     
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    Old 10-26-2015, 07:42 PM   #5
    alove1018
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    Re: New and undiagnosed ... Labs!

    Thanks for all the great info on your skin experiences, VeeJ! I am definitely going to seek out a skilled dermatologist that is well versed in AI's thanks to your great advice.

    My Rheumy called me this weekend and told me that the combination of my documented symptoms and my BW have him sure that I have something. He says possibly SLE that hasn't progressed to classic organ involvement yet (namely my kidneys, bc it's already affecting my lungs) so for now he's calling it UCTD and starting me on Plaquenil. He also said that I have Raynauds and Sjogrens.

    Is it common for people to be diagnosed with UCTD as a precursor to a 'final' diagnosis? Or is UCTD where the buck stops for most? Just curious about other people's experiences with this, as I've not heard much about it!

    I am feeling a strange mix of emotions after this diagnosis. I've been in pain, had 'weird' symptoms for years and have seen many GP's who seemed confused but not concerned. I've dealt with family members that have called me a hypochondriac and the loss of my job and hobbies, with no tangible explanation for it, no name. I feel relieved that I've found a dr that sees what I'm feeling and isn't brushing off abnormal labs, but I also feel overwhelmingly anxious. I don't know why, I've known I was sick for years, even some others didn't. It's just real now, I guess. The monster has a name, at least, a temporary one.

    But I am looking forward to starting my Plaquenil tomorrow and hopefully feeling better! I know it takes time to work, but if it helps even a little, I will be overjoyed! Especially with my brain "fogginess" (as the rheumy calls it) - so frustrating!

    Thanks again for the support, it is much needed and dearly appreciated. <3

     
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    Old 10-27-2015, 06:35 AM   #6
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    Re: New and undiagnosed ... Labs!

    Gee, great news that you got far enough along to qualify for treatment! I recommend that you head to your library & borrow lupus books written by rheumatologists. Why? Because one author in particular covers everything under the sun, with loads of info on all the "close cousins" too (MCTD, Sjogren's, RA, UCTD, etc.), plus all the meds, the tests, etc. Anyhow, he also discusses UCTD at some length. In a 5-year study he describes in detail, some patients resolved into specific AI's (he names all), others had no disease at all (interesting, huh?), and yet others were *still* classified as UCTD.

    Yes, UCTD is a legitimate dx, absolutely. Personally I've wondered if just the savvier rheums use it? Knowing how it fits into the broad picture means that your rheum knows a LOT about ALL the candidates, which I'd find reassuring.

    Not sure how your rheum phrased his comments about lupus, but patients don't "necessarily" ever have kidney involvement. Many don't, luckily. The lupus patients without major organ involvement (heart, lungs, kidney, brain) are classified as subacute. Of course, subacute can feel downright nasty and life-altering, but it sure beats having major organ issues. And that's another thing that those hardcovers will help you see: that you likely have only a small percent of the symptoms possible in these conditions, which is a valuable perspective to gain.

    Question: did your rheum counsel against sun? If he didn't say either way, I think you should ask point-blank.

    To protect my scalp, I wear hats of dense material with broad rims. I wear a good UV block under my makeup. (It took some experimenting to find one to which my foundation adheres.) Also, long sleeves & leggings. And I limit time in midday sun (10-4). I hate all this, but I do it, because the anti-Ro subgroup is believed to be the most photosensitive. (I'm an anti-Ro, too.)

    Also, you might ask your rheum to recommend a dermatologist. (My first eight derms were a waste of time. But the 9th, the one chosen by my 2nd rheum, was wonderful.)

    Like you wrote, I too felt anxious but very relieved to have answers and help. Then reading assuaged my biggest concerns, so I really can't recommend reading strongly enough. So we'll look forward to more updates, OK? Sending you my best wishes with hugs, too.

     
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