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    Old 08-24-2016, 12:58 PM   #1
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    Rheum Appointment In A Month But I Have Results ...

    Hi! In limbo land with a possible autoimmune disorder. I've received test results but haven't spoken to my rheum about them.

    I was just in the hospital for 3 days due to having difficulty walking and weakness in my legs. Let me give you the rundown of my symptoms.

    - Extreme pain in upper back and neck.
    - Joint pain and popping/cracking.
    - Swollen fingers on and off.
    - Tingling from the hips to feet when exposed to heat and/or standing and walking.
    - Left sided tingling that starts in my left face and travels into left arm and left leg when putting head in certain positions.
    - Heat sensitivity.
    - Extreme fatigue
    - Flu like feeling 3-4x a week. No fevers.
    - Stabbing pain behind left eye and eyelid twitches.
    - Weakness in legs when walking and climbing stairs.
    - Rashes on chest that are red, flat, and itch.
    - 1:640 (test says PATTERN: SPECKLED
    - Low C3 and C4 (compliment proteins)
    - Stuttering, foggy memory.
    - Foot Drop (?), nurses and doctors commented on how flat my feet are when they rest.
    - Balance issues.

    It's been like this every day for a year and a half. Clear MRI's of cranial, cervical, thoracic, and lumbar. Going in for a lumbar puncture on 8/30. Doctors in the hospital kept throwing around possible MS or Lupus, but right now I'm only diagnosed with fibromyalgia.

    I know no one here can diagnose me, but does it seem like I am leaning towards lupus? I just want to either stop worrying or prepare myself. Diagnosis stories would also be wonderful.

    Last edited by bc733; 08-24-2016 at 02:57 PM. Reason: Forgot some symptoms

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    Old 08-24-2016, 04:56 PM   #2
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    Re: Rheum Appointment In A Month But I Have Results...

    Hi and welcome. Glad you found us. I've read articles about the challenges of differentiating APS lupus (lupus with antiphospholipid syndrome), CNS lupus (lupus with central nervous system involvement), and MS. To be honest, I'd never known that MS can cause, at least early on, a positive ANA in 1/4 or more of MS patients. Researchers may have studied whether ANA in MS stays positive or eventually fades (you could ask that). I'd also never realized that a "crossover" called "lupoid sclerosis" exists.

    Have you read the "sticky posts" (permanent info posts) located above the user threads? There's one on lupus-specific rashes. How large are the flat, red, itchy things on your chest---or is it almost like one large-ish reddened area?

    There's also a sticky with the criteria used to diagnose lupus. While ANA is positive in most systemic lupus (95% to 98%), an *additional* finding of any of the "ANA subtype(s)" common in lupus could add a lot of weight, I think, such as anti-ds-DNA, anti-SM, etc. Do you know if any of those more specific antibody tests were run yet? Also, there's a sticky on antiphospholipid syndrome (APS).

    I was an uncommon dx. Problems from age 13: low WBC, widespread pain. New things over time (GI misery, migraines, hair loss). Last to arrive: weird targetlike non-itchy non-scarring lesions on back and upper arms, that I finally correlated to sun exposure. Because ANA stayed negative, local doctors didn't consider lupus, but large metro teaching hospital rheum did immediately. Turned out to be positive for anti-Ro only yet I didn't really have Sjogren's symptoms. A dermatopathologist confirmed rash was lupus-specific by performing a Lupus Band Test (LBT); rash name is SCLE (subacute cutaneous lupus erythematosus, annular form). The biggest thing I learned: my local doctors should have known about more lupus rashes; they only seemed to know malar (butterfly) or discoid (the ones that scar), but there are more.

    Good luck with 8/30 lumbar puncture. Please let us know how it goes. I'd love to hear more about your chest rash, to see if I might recall anything my doctors rattled off on the subject of less-common lupus-specific rashes, that you could then ask your rheum to speak to. I hope that clarity arrives soon. Hugs!

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    Old 08-24-2016, 06:13 PM   #3
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    Re: Rheum Appointment In A Month But I Have Results...

    Hi and thanks so much!!

    My rash can get pretty big, and sometimes it's just patches. I don't know what causes them, but I know for sure its not due to clothing or lotions or anything like that.

    Some test results:

    WBC: 8.7
    Platelet Count: PLATELET CLUMPS
    Rheumatoid Factor: <20
    Anti-Double Stranded DNA Antibody/ Negative
    C3: 74
    C4: 14

    Last edited by Administrator; 09-01-2016 at 10:00 AM.

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    Old 08-25-2016, 03:18 AM   #4
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    Re: Rheum Appointment In A Month But I Have Results...

    "bc", I'm only a patient, but I'm wondering about the rash named Tumid Lupus Erythematosus. You could see if pics/descriptions resemble what you get; and if yes, definitely ask rheum. Several other thoughts:
    • The lupus criteria currently used don't name the rash, but a proposed set of new criteria do. In the 2012 SLICC SLE Criteria, tumid lupus is named.
    • The LBT (that special skin biopsy I mentioned earlier that looks for immune deposits) may or may not perform well with tumid lupus. It's a specialty test that requires special skills to perform. Mine was done by a dermatopathologist (degreed in pathology and dermatology). I assume anyone LBT-capable would know whether the test is worth doing.

    Blood labs.
    • You said C3 and C4 are low; those findings can be seen in lupus. Do you know the reference ranges for the others? For example, if WBC is low, when it's really low, there's a point at which it's called "leukopenia" (also common in lupus). This can happen in lupus due to the inflammatory process using up WBC's at a fast clip, or to antibodies targeting white blood cells.
    • As for "Platelet Clumps", I assume they shouldn't... I'd ask if that result suggests the need for full-blown APS testing, also for antibodies directed at platelets.
    • Anti-ds-DNA being negative doesn't disprove lupus. There are a raft of other "anti's" possible.

    I have to pause, but I'll leave you with another thought. Go to your library and look for some of those resources mentioned in the stickies. One for sure has a full page on the LBT skin test, charts with all the antibodies seen in SLE, a whole chapter on how lupus is differentiated from other conditions, etc. (I stumbled across "my" rash in that hardcover, and that's what propelled me to a new set of doctors and finally a diagnosis, after years of trying.) Bye for now.
    P.S. Also look in those books for which joints etc. lupus can affect. The short answer is, any joint with synovium. One book I keep says upper cervical spine is the ONLY part of the spine with enough synovium to produce inflammation.

    Last edited by VeeJ; 08-25-2016 at 03:37 AM. Reason: fixed formatting & added P.S.

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    Old 08-31-2016, 07:11 PM   #5
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    Re: Rheum Appointment In A Month But I Have Results...

    Originally Posted by dove062476 View Post
    Your symptoms mirror mine.I dont have the flu feeling for 3-4 times a week or the stabbing behind my eye. The body aches last for days though. Or the chest rash. The rashes are a new thing to me. Very small. I posted them on the ms board and here. The pain in my legs is so bad my legs turn inward. Almost like I am severely pigeon toed. Hubby got a pic of me last week and when I saw it, I realized that it was the day before I had another episode. The tingling, numbness and pain can last for days. All on my left side. Rarely my right side. Although both sides are happening together more frequently. Rarely just one side anymore. My migraines start at the base of my skull and move to my forehead. All the way down to my feet. So much pain and pressure in my skull. My ana was negative as well. And this has been going on for almost 13 years. My RA was 23 or 24, I still need to look in my folder.Please update us. I am so curious now.
    The platelet clumps should definitely be checked out further with Anti phospholipid antibodies. With your symptoms and labs I would suspect lupus more than ms. Rash biopsy could be diagnostic if lupus band test is positive. Other antibodies can be tested to help confirm and the results of lumbar puncture should be helpful at least. I hope it went well for you. It's important to note whether the chest rash is brought on or worsened by sun exposure, typical of lupus rashes.

    Last edited by ladybud; 08-31-2016 at 07:16 PM.

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    Old 08-31-2016, 09:33 PM   #6
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    Re: Rheum Appointment In A Month But I Have Results...

    Where would the platelet clumps be on my blood test? I have some of the tests. The more recent ones.
    I woke up with a sore in my mouth and one is beginning in my nose. Ugh! I can feel another episode coming on.

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    Old 09-01-2016, 03:58 AM   #7
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    Re: Rheum Appointment In A Month But I Have Results ...

    "bc" and "dove", following are some general info and tests for antiphospholipid syndrome (aka APS, sticky blood syndrome, and Hughes syndrome):
    • Most, not all, people with APS also have lupus. About 1/3 of people with lupus have APS antibodies BUT only about 1/3 of those actually have clotting problems. i.e., the presence of APS AB's alone doesn't warrant treatment.
    • When and on whom are the tests run? New lupus patients. People with symptoms of APS (refer to the "sticky post" on APS.) People who have abnormal clotting times and thus are deemed "hypercoagulable". (Alas there are MANY reasons for hypercoaguability, such as inherited and acquired "clotting factor mutations", heart irregularities, obesity, high cholesterol, ETC., so doctors must work thru a long list.)
    • For a diagnosis of APS, doctors must find (at least) one lab criteria plus one clinical criteria.
    Lab criteria for APS
    • Oddly, a false-positive syphilis test result occurs in people with APS, because of an AB called anticardiolipin; this is why a false-positive syphilis test is cited in the lupus criteria. Further, the particular anticardiolipin "subtypes" most implicated in clots are IgG and IgM isotype anticardiolipn AB's. For those, doctors look for two sets of positives at least 12 weeks apart.
    • Doctors also look for AB's to B2 Glycoprotein (IgG or IgM isotypes) to be positive twice, 12 weeks apart.
    • Doctors also look for another AB, Lupus anticoagulant, to be positive twice, at least 6 weeks apart.
    Clinical criteria for APS
    • Vascular thrombosis. 1 or 2 within 5 years.
    • Pregnancy morbidity. One or more unexplained loss of a normal fetus after 10 weeks gestation; or unexplained loss of a normal fetus before the 34th week, due to pre-eclampsia, eclampsia, or placental insufficiency; or three or more unexplained spontaneous abortions before the 10th week.
    These are really "layered", unfortunately, but reviewing the APS sticky post in conjunction with the above should help you form a mental picture. Hope this helps some. Sending my best to you both.

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