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    Old 04-22-2007, 12:08 PM   #1
    Willow Star
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    Question Would you please give me your opinion?

    Hi...I'm so sorry, I know this is long and I do apolgoze.....I just needed to see what you all thought about the test results I had...The rheumatologist said Mixed Connective Tissue Disease...possibly Lupus based on tests run by my Dermatolgist. She then sent me off to do more blood tests and the results are below. I was so shocked by all this as it came about totally unexpectedly. Every time I mentioned any symptoms to my doctors over the last few years I was basically told it was all in my head or due to stress or getting older so just figured it was all normal....please let me know what you think, I would appreciate it so much...(by the way, I do have mild ulcerative colitis which is very much under control and has been for about 8 months or so)

    These were performed first, dermatologist ordered based on questions she asked me (was seeing her for a rash I have)
    ANA - Positive - 1:320 Speckled
    Rheumatoid Factor - Positive 63 (<20 IU/ml)
    Anti - SSA (Ro) - Positive
    Anti - SSB (La) - Positive
    Anti - RNP - Negative
    Anti - Scl - 70 - Negative
    Anti - Jo - 1 - Negative

    These were ordered by the rheumatologist:
    Serum Protein Electrophoresis - Abnormal (my GP did this test at request of a haemotologist oncologist, did not give me any actual numbers, only said that unsurprisingly it was abnormal)
    Leukocytes (Urine) - High 25 (<10 leuk/uL)
    ESR - High 31 (<20 mm/HR)
    CRP - Acute Phase Reactant - High 14 (0-5mg/L)
    GGT - High 84 (0-50 IU/L)
    AST - High 74 (<31 IU/L)
    ALT - High 71 (<31 UI/L)

    Didn't say positive but had an X under "Cmt"...comment perhaps? There may be comments by the lab that I didn't receive?
    Anti DNA Antibodies
    Anti LKM
    Anti-Sm Muscle AB (had the word "note" in the column where it says results but no comments received with tests)
    - I'm assuming there must have been something of note about all of these tests...I only wish I knew what.

    Negative:
    C3 - 1.76 (0.8-1.80g/L)
    C4 - .22 (0.1-0.5 g/L)
    Anti-Cardiolipin AB
    ACA - IGG - 9 (0-18GPL units)
    ACA - IGM - 3 (0-10 MPL units)
    AC - IGA - 1 (0-15 APL units)

    There were many other tests run that were in the normal range.

    Symptoms I have or have had:
    - Sun sensitivity (rashes, feels like it is burning me within seconds, started about 10 years ago)
    - eyes very sensitive to light
    - have had what might be a malar rash...like a sunburn across my cheeks, nose and bit of my forehead, has happened many times
    - losing hair so bad...and everywhere!
    - fatigue
    - so hot! I break out in sweats many times during the day
    - never sleep well
    - headaches
    - blood pressure is high, have always had too low blood pressure
    - liver numbers have been elevated for quite some time now
    - dry eyes (cannot wear contacts anymore)
    - shortness of breath
    - dizziness, off balance
    - I swear I have no brains left, hard time remembering the simplest words, names of people I've known for years, names for objects
    - have / have had joint pain in knees, ankles, feet, wrists, hands & fingers off and on
    - multiple enlarged lymph nodes (painless, all approximately 2 cm in length) under both armpits - have been this way for a few years but no one seemed to care until now
    - extreme reaction to mosquito bites

    Please let me know your opinion of what you think is going on...I would really appreciate hearing everyone's thoughts. I'm quite nervous about it all really but would love to have an answer about what's going on.

    Thank you
    Wilow

    Last edited by Willow Star; 04-22-2007 at 12:18 PM.

     
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    Old 04-22-2007, 03:33 PM   #2
    VeeJ
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    Re: Would you please give me your opinion?

    Hi, Willow. I can't interpret professionally, because I'm NOT a professional, just a patient. But I noticed right off that your anti-Ro & anti-La are both positive. I found out the hard way that these antibodies may appear in lupus.

    I was Dx'ed with the SCLE subset (SCLE = "subacute cutaneous lupus erythematosus") of SLE. I had a lot of the symptoms you list, e.g., hair loss, fatigue, photosensitive rashes (mine were on arms & torso), headaches, GI problems (mine was deemed irritable bowel & it was my #1 problem for 20+ years), joint & long bone pain (shins & arms), elevated sed rate, wild reactions to stings/bites, low-grade fevers, stones, UTI's, tingling & mild neuro problems, etc.

    After 8+ years of rashes (they were almost my last problem to appear), I went to a metro teaching hospital rheumie who took less than a month to arrive at answers, through lifelong medical history, physical exam, new bloodwork, and one last skin biopsy (incl. fluorescent stain tests that detected results seen ONLY in lupus).

    Yet I was ANA-negative all along. I found out that in the SCLE "subset", ANA is negative maybe 1/3 of the time.

    I only know one other woman who was Dx'ed with SCLE based on positive anti-Ro & anti-La. She had the same targetlike rashes I did & many of the same problems, including a long history of very severe GI issues. However, unlike me, her ANA finally turned positive & she also tested positive for antiphospholipid syndrome.

    Anti-Ro is also associated with Sjogren's syndrome, not just lupus... But in answer to your question, is it possibly lupus?---my sense is that it could be, but I'm definitely not a professional... I have to say, though, that I take my hat off to your rheumie, for knowing there are antibodies seen in lupus OTHER than anti-ds-DNA & anti-Sm. My local drs. didn't understand this, didn't know about the SCLE "subset", and had no idea what to do with me, except to raise their voices & to recommend psychiatric help.

    I hope you can get the answers you need soon & treatment. And I hope you post more when you can. Best wishes, from Vee (P.S. I have done MUCH better on Plaquenil & sun avoidance. So whatever it turns out to be, you just hang in there, OK?!)

     
    Old 04-22-2007, 05:11 PM   #3
    jenilee70
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    Re: Would you please give me your opinion?

    Quote:
    Originally Posted by Willow Star View Post
    Hi...I'm so sorry, I know this is long and I do apolgoze.....I just needed to see what you all thought about the test results I had...The rheumatologist said Mixed Connective Tissue Disease...possibly Lupus based on tests run by my Dermatolgist. She then sent me off to do more blood tests and the results are below. I was so shocked by all this as it came about totally unexpectedly. Every time I mentioned any symptoms to my doctors over the last few years I was basically told it was all in my head or due to stress or getting older so just figured it was all normal....please let me know what you think, I would appreciate it so much...(by the way, I do have mild ulcerative colitis which is very much under control and has been for about 8 months or so)

    These were performed first, dermatologist ordered based on questions she asked me (was seeing her for a rash I have)
    ANA - Positive - 1:320 Speckled
    Rheumatoid Factor - Positive 63 (<20 IU/ml)
    Anti - SSA (Ro) - Positive
    Anti - SSB (La) - Positive
    Anti - RNP - Negative
    Anti - Scl - 70 - Negative
    Anti - Jo - 1 - Negative
    Hi Willow Star,

    I don't really have an answer for you, since I'm sort of in the same boat. I've been told by my rheumatologist that I likely have some kind of autoimmune disorder and/or arthritis, but I haven't gotten a more specific diagnosis. He has ruled out RA, though, and I'm not sure why.

    I too have positive ANA and positive Anti SSA and SSB. The rest were negative.

    With three family members with lupus, that was the first thing I suspected, but it seemed unlikely since I have negative anti-ds DNA and anti Sm.

    So I find it very interesting to hear from VeeJ that it can be lupus without the most typical antibodies, and that anti-SSA and SSB can also mean lupus. Do you know about any research or articles that confirm this?

    My doctor seems to have never heard of that, and he doesn't seem to have heard of mixed connective tissue disease either, since he has never mentioned it as a possibility (and he has mentioned most everything else).

    At any rate, I don't know what I have exactly, but I have had a lot of relief from both fatigue and anemia by taking Plaquenil. Too bad it hasn't helped as much with the joint pain.

    Wishing you all the best!

    Last edited by jenilee70; 04-22-2007 at 05:13 PM.

     
    Old 04-22-2007, 08:47 PM   #4
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    Re: Would you please give me your opinion?

    Jenilee & Willow Star, I read Jenilee's post & decided to add more. Here goes! (But, once again, I'm only a patient.)

    Have you read the "sticky post" with the ACR criteria for diagnosing systemic lupus (SLE)? As explained to me by my city drs. (rheumatologist & dermatopathologist), you need to meet at least 4 (or more) of the 11, at some time---but not necessarily all at once---to be diagnosed with systemic lupus (SLE).

    However, you do NOT have to test positive for anti-ds-DNA or anti-Sm to have lupus. Yes, these are considered "diagnostic" of lupus, because they simply don't occur in any other disease. The thing is, there are OTHER autoantibodies & complement problems possible in lupus. In fact, Dr. Daniel Wallace lists 16 (!) in his hardcover, of varying "specificity" to lupus.

    Now here's how the "subsets" come in: they fall within the "4 of 11". For example, you could have "discoid lupus" (DLE) and meet, say, just 2 of the 11.

    And in the SCLE subset, people often actually meet 4 or more criteria. (I met 4.) But it's believed that the odds of kidney & CNS involvement are lower than in SLE.

    Anti-Ro doesn't automatically mean that someone has SCLE. For one thing, perhaps such a person has "only" Sjogren's. Or perhaps this person ALSO is positive for anti-DNA, in which case it's probably likely that the Dx would be SLE, as opposed to SCLE.

    Conversely, some people (a minority) are Dx'ed with SCLE without testing positive for anti-Ro.

    Why I think I was Dx'ed with SCLE, not SLE: well, one biggie is that I had one of the two rashes of the "subacute cutaneous LE" type. Mine was the annular form of SCLE rash (targetlike with clear center). There's also another SCLE rash that's called papulosquamous (or psoriasiform), which looks entirely different. But I did NOT have the symptoms heavily associated (or 100% associated) with SLE (systemic lupus), such as malar rash, positive anti-ds-DNA, etc. Nor did I have truly acute problems like kidney or major CNS.

    SCLE favors women of western European heritage. (This fits me: I'm of English background on both sides.)

    I never had any signs of Sjogren's, in which anti-Ro is common, but I *think* it's possible to have both Sjogren's & SCLE.

    Also interesting: as many as 1/3 of people with SCLE test positive for RF. And some people with SCLE have erosive joint damage; and some eventually end up with RA also.

    Hardcover info---Dr. Daniel Wallace & Dr. Robert Lahita are two well-known US rheumie/authors; Dr. Wallace describes SCLE, but I'm not sure what Dr. Lahita covers (loaned my copy & never got it back). In the UK, I know Dr. Graham Hughes has hardcovers out, but I'm not sure to what extent he covers anti-Ro & SCLE.

    Look-ups---You could try looking up SCLE (subacute cutaneous lupus erythematosus), or anti-Ro, or Ro-lupus. Or just "lupus variants". Also, I *think* the dr. who did the groundwork on SCLE in the late 70's, and gave it a unique name to distinguish it from SLE, was Dr. James Gilliam.

    It's hard to find the right words, so just give a yell if this doesn't make enough sense, OK? With my best wishes to you both, from Vee

    P.S. Jenilee, Plaquenil has helped me a lot, but I still need OTC's for pain. I tried both Celebrex & Vioxx but found that plain old ibuprofen helped more. FYI, my many local drs. had never heard of SCLE either, apparently. I saw 4 or 5 dermies locally, rheumies, urologists, gastroenterologists---you name it. Had multiple skin biopsies. Then the city rheumie took, oh, all of 10 seconds to come up with a plan of action for new tests, etc. He worked so quickly & with such assurance that I didn't know whether to laugh or cry.

     
    Old 04-23-2007, 06:57 AM   #5
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    Re: Would you please give me your opinion?

    Hi Willow Star. I hope you can figure out more of what's going on soon. I'm only a patient but I was surprised your rheumatologist said MCTD. I did some reading on MCTD recently because I had a recent lab with a positive RNP which was new for me. The path report mentions MCTD and SLE as most likely causes of that. So I went reading up on MCTD and from what I have read so far (and I haven't found a whole lot), a positive RNP seems like a highlight of MCTD. I think I read one article that said it was almost always positive. I'm curious what other rheumatologists would say on this point.

     
    Old 04-23-2007, 07:57 AM   #6
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    Re: Would you please give me your opinion?

    Willow & ljs, I've read the same that ljs posted, that positive anti-RNP is considered a requirement for a Dx of MCTD. Also, that about 25% of people with SLE *also* meet the definition of MCTD. These are several of the points Dr. Daniel Wallace lays out in his hardcover, in his discussion of how to differentiate lupus from similar conditions.

    Best wishes to you all, from Vee

     
    Old 04-23-2007, 09:31 PM   #7
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    Re: Would you please give me your opinion?

    My first test to come back positive was Anti Ro SSA, the SSB was negative. my carduolpin (have no idea how this is spelled) was indeterminate but did eventually turn positive. I had alot of neuro problems which clouded the issue for quite sometime including bilateral optic neuritis which is very uncommon. They also suspected Transverse Myelitis since I was unable to walk for about 6 weeks. My ANA has now turned positive but that didn't happen untill this past year and I finally went from being tagged with UDMCT to SLE after pleurisy, myacardia ( I cant remember how this is spelled either, it was inflamation and fluid building around my heart. I also have pretty sever rashes on my face. The one now is a doozy. But the worst of it is on my chin. That one stays and stays. This has all been evolving over the last 3 years. My joints are actually deteriorating now so they think I might have RA as well and my RA factor has been pretty high. My liver tests are very irratic even when I was not on methotrexate and have now gone through the roof (ALT & AST 6X normal) so I am not sure what the next plan will be. I find out in 2 weeks what we will try next. Meanwhile I am on 70 mg a day of prednisone and still flaring away. My sister also has lupus but she is no where near as active as mine. I am just hoping that once I hit and go through menipause it will lighten up. I think I will make a thread on that. I wonder if it will help since it is a well known fact that the hormones do effect the lupus...sorry rambling on..

    All I can tell you is to stick with it. You know your body better than anyone else. Your test results are saying very plainly that your immune system is not working properly and the antibodies are out of whack. Just keep at it.

    Are you on any meds?

    Erin
    Dallas, TX

     
    Old 04-25-2007, 04:13 PM   #8
    Willow Star
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    Re: Would you please give me your opinion?

    Wow...thank you so much everyone for all the great info! You guys are amazing and I truly appreciate all your comments. As for the MCTD, I was quoting what the rheumatologist said to me and I don't really know what it was based on. I'm in the dark with all of this so that's why it helps so much to hear what you all have to say and think.

    After doing some reading I was wondering if it might actually lean more towards Sjogren's Syndrome. There were some test results that seemed to have comments or notes that I didn't have access to so I imagine that they could make a difference in what the rheumatologist thinks. I guess I will just have to wait and see as I go back in just over two weeks to discuss the test results with her. The only medication I take right now is for ulcerative colitis (Asacol).

    I do want to thank all of you so much for sharing your knowledge and thoughts with me. It's nice to know that there is such great support out there. For those of you struggling to get help or a diagnosis I hope that you find a caring doctor who is willing to go that extra mile and help.

    Willow

    Last edited by Willow Star; 04-25-2007 at 04:15 PM.

     
    Old 04-27-2007, 11:02 AM   #9
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    Re: Would you please give me your opinion?

    Willow Star, keep us updated on your next appointment. I was thinking Sjogren's too when reading your information but it sounds like there's more to find out. Also, from all I've read, Sjogren's seems to often be considered secondary as it often co-exists with another autoimmune disorder. Anyway, I hope your appointment is helpful and please let us know what you find out.

    Last edited by ljs; 04-27-2007 at 11:02 AM.

     
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