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Where to from here?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Cohen2, Dec 9, 2016.

  1. Cohen2

    Cohen2 Senior Member

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    Ive just had results from Anti nuclear antibody testing back and it is positive and the titre is 1:80 in a nucleolar pattern. I know that slighlty high ANA is somewhat common in ME/CFS. But I still feel its worth to chase the auto immune disease angle given my symptoms. Also at the start of my illness my immune system didnt create the normal anti bodies against EBV.
    Can anyone explain what a nucleolar pattern might indicate? (I have loooked online but cant find much info) and what Auto antibodies I should get tested for? I will be seeing a doctor in a week so any help will be appreciated.
    I will list symptoms later if anyone shows interest in this, although they are probably non specific. tagging @Jonathan Edwards
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    no idea, one of my ANAs came back speckled and Ive heard several others here mention speckled ANA.
     
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  3. SuzieSam

    SuzieSam Senior Member

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    They'll probably test you for all the usual auto antibodies for Autoimmune diseases - Lupus, rheumatoid arthritis, sjogren's syndrome etc. There's a whole auto immune panel that should be done with a positive ana. I seem to get tested for them every year or so. I have borderline positive results for Anti-Phospholid Syndrome. I guess they're wondering if I'll tip over into full blown positive and require treatment.

    Worth pushing for a full panel.
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Your symptoms would be relevant. In general terms a 1/80 titre of anti-nuclear antibodies with fatigue would indicate to me an autoimmune disease within the lupus spectrum but more likely a more subtle form that can be called 'undifferentiated connective tissue disease'. I personally believe that anti-nucleolar antibodies can cause severe fatigue. A good rheumatologist should be able to assess the situation (such as Dr Fiona McQueen in Aukland). This sort of illness may never show much more in the way of specific symptoms but should certainly be checked out carefully.
     
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  5. daisybell

    daisybell Senior Member

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    @Cohen2 it looks like Prof McQueen is now in Southland, so perhaps you can g4t to see her?
     
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  6. Cohen2

    Cohen2 Senior Member

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    Thanks for your reply. Would 'undifferentiated connective tissue disease' be possible without having much joint pain? I only get joint pain occassionally, more often I have stiffness or weakness in joints same with my knees. As for other symptoms the list is long and has varied over the years. Some of my current symptoms are severe fatigue, muslce weakness, Orthostatic Intolerence, blurry and slightly shaky vision, brain fog, upper abdominal pain and IBS, short term memory problems, a degree of numbness in my hands and feet with tingling or pins and needles sometimes, constant irritated feeling in my throat, occasional neck and armpit lymph node swelling, slight dizzy feeling, faint rash on stomach with raised red and sometimes white bumps here and there, broken capillaries, pin point flat red dots on feet and elswhere, persistent fungal infection of toes which has now spread to the nails.

    Things that have shown up on the limited testing Ive had are: Hypometric Saccades, Brisk upper limb reflexes, Raised level of Calprotectin, Negative VCA IgM, VCA IgG or EBNA IgG for at least a year after getting Epstein Barr Virus, High LDL chlolesterol.

    I think I will skip a GP visit and instead book to see Dr Fiona McQueen. Do you know how long she is in Southland @daisybell? Can you please give a link to where you saw that?
     
  7. daisybell

    daisybell Senior Member

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  8. rosamary

    rosamary Senior Member

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  9. Cohen2

    Cohen2 Senior Member

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    Cheers and actually Southern DHB which means she could be in Dunedin, although it is public so getting in to see her could be difficult. I will probably try get a referal from my GP. Theres one private Rheumatologist here, havent heard anything about her though

    Thanks, I checked that out, I dont think I have enough of the skin problems for it to be likely though
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Undifferentiated CT does not necessarily include joint symptoms. Probably the single most specific feature would be change in small blood vessels - what are known as telangiectasia. An experienced rheumatologist would be able to make the relevant assessment.
     
  11. Cohen2

    Cohen2 Senior Member

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    Ok, seems like I do have telangiectasia. I'll be seeing a rheumy soon
     
  12. Cohen2

    Cohen2 Senior Member

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    I have been turned down by the Rheumatologist after having to convince my doctor to refer me. The private Rheumatologist in my city isn't taking new patients. The only other option I can think of is asking my Gp for auto antibody tests.
     
  13. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Really, really sorry to hear this. I've had referrals declined too, so I understand what a slap in the face it is.

    Edit: If you think your skin symptoms might help with getting a diagnosis, you could see a dermatologist privately. Sometimes you can do this without a GP referral, depending on where you are.
     
    Last edited: Jan 13, 2017
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  14. Cohen2

    Cohen2 Senior Member

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    Thanks. Yeah that is a good idea. I can see a dermatologist without referal.
     
  15. Cohen2

    Cohen2 Senior Member

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    I had to be pushy to get the Dr to order autoantibodies and even then he only ordered a few.

    Anti dsdna is positive. From my reading it looks like anti dsdna is very uncommon in healthy people. High levels are specific for Systemic Lupus. Lower levels are almost always associated with disease, usually autoimmune diseases.

    Does that sound correct @Jonathan Edwards?
     
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  16. Cohen2

    Cohen2 Senior Member

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    Also have presence of thyroid and coeliac auto abs. Doctors are fighting me at every step so any input is greatly appreciated.

    My lymphocyte count has also been falling for three years.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I was curious about this statement b/c I have heard mixed opinions. I have a positive ANA of 1:160, speckled pattern. @Jonathan Edwards, from your research, is a high ANA usually indicative of ME/CFS or of a different autoimmune disease (even if that disease does not fit a known category like lupus)? This continues to confuse me.

    I am curious if anyone can explain what the different patterns mean in general (like nucleolar vs. speckled pattern, etc).

    @Jonathan Edwards Could 1:160 titer, speckled pattern, also indicate undifferentiated tissue disease?

    That is interesting b/c I also do not have any joint pain but I do have a change in blood vessels and for the last few months have had a "livedo reticularis" type pattern on my legs. I just Googled pics of "telangiectasia" and it does not match vs. LR.

    The Rheumy I saw early in 2016 was useless but I guess if you see a good one, they can be helpful. He said that my antibodies (at that time N-type CA+ channel and GAD65) could not be causing my symptoms but then admitted that he had zero familiarity with them.

    Thanks @Cohen2 for your post on this topic and I am hoping that you will find the answers and help that you need. I think there are many autoimmune diseases out there that have yet to be given an official name.
     
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  18. Cohen2

    Cohen2 Senior Member

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    @Gingergrrl I remember seeing research that showed low level ANA titres being common in M E. Can't remember where I saw though

     
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  19. TrixieStix

    TrixieStix Senior Member

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    I've just learned that my Complement Component C3 and C4 are below normal range (C3 is more than 50% lower than the lowest end of normal range). My NK Cell Function has also come back extremely low at 4, but not sure if the 2 systems have any direct relation. Also just to be clear I am NOT referring to Complement C3a and C4a which people online seem to often confuse with C3 and C4. It is my doctor at OMI who ordered the tests, but I don't have another appt for over a month. We are trying to make sure nothing has been missed before we settle on ME/CFS as my definite dx. From what I've found online I gather that being low in both C3 and C4 is mostly associated with Lupus.

    I saw a rheumatologist last year, but she never ran any specific tests like "Anti-dsDNA", "APLs", "Anti-sm", etc since my ANA was negative, and she just blamedit on Fibromyalgia even though I am severely debilitated/disabled/in constant pain/housebound. I've just sent the rheumatologist a message asking if she thinks my abnormal C3 and C4 results warrant returning to see her again to investigate further. Does that seem rational in your opinion?

    It might also be worth noting that in the past 3 years I have had 3 serious post-surgical bacterial infections...staph, pseudomonas, and a life threatening C. Difficile Colitis infection that put me in the ICU for 10 days. I also was very sick with Salmonella in 2004. I see Lupus is associated with increased risk of bacterial infections.
     
    Last edited: Mar 19, 2017
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Your plan sounds sensible but if the ANA is negative lupus is unlikely. Low C3 and C4 go with lupus but in the absence of ANA they would be harder to interpret. Abnormal complement levels would certainly be a reason to re-investigate through a rheumatologist. ANA might turn out to have switched to positive.
     
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