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immune related tests i should order for bilateral paresthesias...gloves?

Discussion in 'Immunological' started by waif, Oct 14, 2017.

  1. waif

    waif

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    i'm so overwhelmed
    i don't even know, do i go to anohter rheum?
    i want like my immune system thoroughly checked for viruses and the ydon't do that??
     
  2. waif

    waif

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    eeep, you have a lot of good information in your post.. i'm so frazzled i can barely read

    i had the "with reflex" test and it was negative but i didn't understand what that meant, good to know. i was actually wondering that in an earlier post, like what if you just started taking plaquenil to see what happens...though it does take months to kick in. nose pain to me seems like a rp symptom? i never hear people complain about their noses. my nose would ache but i had a deviated septum.

    this random info seems useful

    • Antibodies to DNA (the protein that makes up the body's genetic code) are found primarily in SLE.
    • Antibodies to histones (DNA packaging proteins) are usually found in people with drug-induced lupus (DIL), but may also be found in those with SLE.
    • Antibodies to the Sm antigen are found almost exclusively in lupus, and often help to confirm the diagnosis of SLE.
    • Antibodies to RNP (ribonucleoprotein) are found in a number of connective tissue diseases. When present in very high levels, RNP antibodies are suggestive of mixed connective tissue disease (MCTD), a condition with symptoms like those of SLE, polymyositis, and scleroderma.
    • Antibodies to Ro/SS-A are found in people with either lupus or Sjogren's syndrome, and are almost always found in babies who are born with neonatal lupus.
    • Antibodies to Jo-1 are associated with polymyositis.
    • Antibodies to PM-Scl are associated with certain cases of polymyositis that also have features of scleroderma.
    • Antibodies to Scl-70 are found in people with a generalized form of scleroderma.
    • Antibodies to the centromere (a structure involved in cell division) are found in people with a limited form of scleroderma which tends to have a chronic course.
    going to try to go to "bed" now..whatever that means
     
  3. TrixieStix

    TrixieStix Senior Member

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    @waif Sorry your feeling so overwhelmed and frazzled. I get it. It looks as if your complement levels are normal after all. That's good news. But I do know how frustrating it can be to think perhaps you've found a possible clue or abnormality only to find out that it really is not abnormal or a clue after all. I've experienced my own share of them.

    In terms of SS-A and SS-B do be aware that at least 30% of people with Sjogren's are seronegative which is why being negative for those tests does NOT rule Sjogren's out. Lip biopsy would be the next step. Lip biopsy is considered the gold standard for Sjogren's diagnosis.

    As for your immune system that would not be something a rheumatologist deals with. That would be an immunologist. Perhaps you can get a referral to see an immunologist.

    Yeah an "ANA with reflex" tests for specific antibodies that are not checked if you ANA comes back negative. Mine have always been negative (except for one i guess that was borderline positive) so those other tests have never been run.
     
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  4. TrixieStix

    TrixieStix Senior Member

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    @waif I am on day 4 of the steroids. I've definitely seen improvement in some of my RP-like symptoms, but now that I am tapering down off of them I'm noticing the symptoms going back to their baseline again. My response to the steroids is another check in the column for it being RP. If I indeed have RP (I'm feeling 90% sure I have it at this point) then steroids are about to become a part of my life forever most likely :( Along with drugs like Methotrexate, etc. And it means likely my life will be shortened by the disease as it considered a severe, progressive disease. Just less than 10 years ago 5 year survival rate was 75% and the 10 year survival rate was only 55%. This has improved some though in recent years due to better drugs for treating it.

    Even though the steroids improved my symptoms some and likely mean I need to keep taking them I want to hold off on continuing them until after I've been seen by the ENT, have dynamic CT scan done of my trachea/throat, and have completed the pulmonary function testing, and any other tests that need to be done. 50% of those with RP have trachea/throat involvement (this is biggest risk for death from RP) and I have the symptoms of RP trachea/throat involvement so I want to make sure it's evaluated thoroughly and soon. I have not heard from the ENT scheduler so I will call tomorrow to make the appointment.

    So far I'm finding great support and information in the Facebook RP groups. A few seasoned RP'ers are convinced 100% that I have RP based on my photos and symptoms. My presentation is very classic RP they say.
     
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  5. TrixieStix

    TrixieStix Senior Member

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    @waif hope your able to get some sleep. thinking of you.
     
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  6. waif

    waif

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    They're at the bottom of the range, literally

    They aren't normal
     
  7. waif

    waif

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    i had no idea that rp was so serious! steroids terrify me but it does sound like taking drugs is actually the best way to figure out what the problem is...like if i took steroids i doubt i'd feel any better, tbh.

    i'm looking up pictures of it. red ear disease.

    i'm glad i looked into the ana test again
    http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19946

    it tests for rnp=mixed connective tissue disease

    i'm leaning towards sjogren's, bacteria/viral...or both/all three blaaaah

    another thought i had, my neuropathy mostly manifested in my brachial plexus. so maybe i don't have TOS at all and it's brachial neuritis from whatever else is wrong
     
  8. waif

    waif

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    part of why steroids scare me is because i have insulin resistance, despite being painfully thin,
    hopefully you don't have that too!
     
  9. waif

    waif

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    @TrixieStix do you know if there's a difference between sjogren's patients who have a positive ANA/RF vs. ones who don't, maybe they just have a positive lip biopsy and match the symptoms, in terms of the progression of the disease? i wonder if in a few years my ANA will be positive? my neuropathy is so severe though, idk.

    i'm still worried i floxed myself. and i'll never be able to figure that out. it's depressing.
     
  10. waif

    waif

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    http://pubmedcentralcanada.ca/pmcc/articles/PMC1010603/pdf/annrheumd00245-0092.pdf

    this fascinates me bc my immunoglobulin levels are normal...actually i don't trust that lab, i need to get them checked again. i might order it myself online.

    Considerable elevation of IgG levels in SLE has been previously reported (Cass, Mongan, Jacox, and Vaughan, 1968), with little elevation of IgA or IgM. Compared with SLE, Sjogren's syndrome is a chronic and relatively benign disease. In autoimmune diseases with initially raised IgG, Hobbs (1970b) has observed subsequent elevation of IgM.

    Summary Marked elevation of IgG and IgM levels were found in fifty patients with Sj6gren's syndrome, and a lesser increase in IgA levels. There was little difference between patients with sicca components alone and those with rheumatoid arthritis, but in a smaller group with systemic sclerosis levels of all three immunoglobulins were very elevated. By comparison immunoglobulin levels were only modestly raised in patients with uncomplicated rheumatoid arthritis.
     
    Last edited: Nov 11, 2017
  11. waif

    waif

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    I know this is extremely unlikely but another thought I had was I've been very quick to lump together my C3 and C4 results. But it's possible I have two separate things going on... Like I had Giardia for 2 years, and my stomach is still completely jacked up. I would think that would affect C3. And it's naive of me to think I only had Giardia during that time. I can't wait to order my stool sample.

    Experienced a bizarre flare up a month ago with my stomach burning and then it sent pins and needles all over my body, made my hands more gloved. It started in my stomach which makes noooooooo sense to me

    It's funny how ehlers-danlos syndrome now seems so easy to manage compared to whatever I'm experiencing. I'm extremely cautious about keeping my joints in the right place. This is Out of my control
     
    Last edited: Nov 11, 2017
  12. waif

    waif

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    someone at work got me sick too
    like i'm so mad, she said it wasn't contagious but i've had this wheezy feeling in my throat for 2 weeks
     
  13. waif

    waif

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    so next week i'm going to an infectious diseases doctor and he'll probably laugh at me

    i have 2 rheum appointments at the beginning of next year and i can't wait

    i'm going to ask for (based on this guide https://sites.google.com/site/cfstestingandtreatmentroadmap/):


    Epstein-Barr Viral Capsid Antigen (VCA) Antibody (IgA), IFA OR Epstein-Barr Virus Early Antigen D Antibody (IgG)
    herpes virus six HHV-6 IgM Antibody OR HHV-6, IgG Antibodies
    Cytomegalovirus CMV IgG Antibodies

    because i get cold sores so easily, at the peak of my giardia i had 2 that lasted for a month and valtrex didn't get rid of them....if anything it delayed things.

    i think the girl at work gave me strep

    i retested my iggs
    igG 1026.00 700.00-1600.00 36.2%
    which is fine by me..on the last test they were at 41%

    i'm only pursuing the subclasses if all of my other labs are completely normal
    https://shop.personalabs.com/product/immunoglobulin-g-subclasses-1-4/

    another problem, i've had too much labwork lately. my ferritin must be so low and i can't tolerate iron.

    here's igE
    https://shop.personalabs.com/immunoglobulin-e-ige/
     
    Last edited: Nov 15, 2017
  14. waif

    waif

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    i don't think i have staph but this is interesting regardless
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1536978/

    Serum levels of complement components C3, C4 and factor B were measured in twenty-five patients with Staphylococcus aureus bacteraemia. The levels of C3 were depressed in nine patients, five of whom also had low C4 levels, indicating activation of complement via the classical pathway. Two patients with low C3 levels also had low factor B levels, one of these being in association with a low C4 level, which indicates activation of both the classical and alternative pathways, the latter being via the C3b feedback cycle. The protein A content of the S. aureus cultures, as shown by the indirect haemagglutination titre, was high in nine patients with C3 hypocomplementaemia. There was some correlation between the presence of a high protein A content of the S. aureus culture and a low serum C3 level in the patient. Some clinical evidence of immune complex disease was found in three patients. Complement activation in S. aureus bacteraemia is most likely due to complex formation resulting from the interaction between the Fc portion of IgG and staphylococcal protein A. These complexes may also result in clinical symptoms of immune complex disease.
     
  15. waif

    waif

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