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What is the test in USA for Antiphospholipid Syndrome (Hughes)?

Discussion in 'General ME/CFS Discussion' started by Peyt, Apr 4, 2017.

  1. Peyt

    Peyt Senior Member

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    Hi,
    Does anyone know the name of the test used in USA to detect Hughes Syndrome (Antiphospholipid Syndrome)?
    Would a ANA (Antinuclear Antibody) be a good test for diagnosing this disorder?
    I know in UK they have better tests but I am not seeing much testing info
    in requestatest.com for antiphospholipid antibodies. Requestatest usually has all the available tests on LabCorp and Questdiagnostics in USA.

    Thanks
    Peyt
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    @Peyt I had this panel done prior to IVIG (just to make sure I was not a blood clot risk) and I believe it was actually called the Anti-phospholipid or Hughes Panel just as you stated. An ANA titer would not give you this information. The Panel I had was comprised of multiple different tests and in my case I was negative on all of them which didn't surprise me b/c with MCAS, your blood is often thinner and you bruise easily vs. having clotting issues. Are you doing it b/c you suspect a blood clot?
     
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  3. Peyt

    Peyt Senior Member

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    I have been getting headaches for over 20 years and it's getting worst... The interesting part is that when I take a blood vessel dilating drug or supplement the headache gets better where as if I take a blood vessel constricting drug such as Excedrin(which is suppose to be for headaches) it gets even worst... Also, my mother had 3 miss-carriages before she was able to have me (thinking the gene may have been passed on to me) and ever since I was born I had nose bleeds and blood in the mucus.
     
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  4. ryan31337

    ryan31337 Senior Member

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    Hi @Peyt,

    This may be useful to you, results from an antiphospholipid syndrome screen:

    upload_2017-4-4_23-29-56.png

    Ryan
     
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  5. Peyt

    Peyt Senior Member

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    Gingergrrl likes this.
  6. ryan31337

    ryan31337 Senior Member

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    No problem.

    Would assume so, looks just as comprehensive, if not more so.
     
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  7. Peyt

    Peyt Senior Member

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    Does anyone know what kind of Doctor would usually specialize in this matter? Would that be an immunologist?
     
  8. ryan31337

    ryan31337 Senior Member

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    It's an autoimmune disease, so would assume rheumatologist?

    I foolishly played armchair doctor & rolled the dice on a blood screen for this. Strong family history of blood clots, miscarriage, migraine etc. I had read the account of the guy from Microsoft that had discovered APS as the cause of his 'CFS' and thought, hmm maybe! Sadly not.
     
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  9. Peyt

    Peyt Senior Member

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    How are you feeling now? Are you getting any treatment?
    I have heard that a simple baby asprin can heelp this issue... does that sound right?
     
  10. kangaSue

    kangaSue Senior Member

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    Factor V Leiden is another genetic handed down blood clotting disorder known to cause miscarriage.
     
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  11. ryan31337

    ryan31337 Senior Member

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    I'm doing much better now thanks @Peyt.

    At the time I tried baby aspirin, no effect. The breakthrough for me was having a doctor recognise unstable blood glucose and reactive hypoglycemia. This explained away many of the typical low-grade APS symptoms of migraine, memory/cognition, fatigue etc. I also had POTS confirmed which explains away other potential APS stuff like dizziness & blotchy skin (livedo reticularis). Treatment for those has reduced these symptoms massively. Additionally I discovered that much of my family (and myself) are positive for Factor V Leiden.

    It was a good lesson for me to appreciate that many symptoms are non-specific. Even if you appear to match the list perfectly it still doesn't equate to much! Its difficult when you are desperate, especially when overly enthusiastic doctors/researchers claim that their condition is mega under-diagnosed and the root of all evil etc. etc.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @Peyt Do you think you will be able to have this test done? I hope you can find the answers that you are looking for and best wishes.
     
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  13. Peyt

    Peyt Senior Member

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    thanks for your good wishes Gingerrl,
    requestatest responded back saying they are not going to offer this test... I guess I will wait until May to see my Doctor
    and ask him to order this for me... meanwhile, I don't want to jinx myself but it's been 4 days that I have not had any headaches... The only thing I have been doing differently is I am taking some Cod Liver Oil everyday... I started taking it for a complete different reason but it is actually helping my headaches! I looked it up and besides the Retinal and Vit A , Cod Liver Oil is considered to be a natural anticoagulant(same applies to Evening Primrose Oil). I don't want to get too happy too fast but if I don't get a headache for another 3 days, it would be a record! :)
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    :thumbsup::thumbsup::thumbsup:
     

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