Blood Test For FM

Discussion in 'Fibromyalgia Main Forum' started by brit_17759, Oct 8, 2006.

  1. brit_17759

    brit_17759 New Member

    Hello all

    I haven't posted on here for over a year....been having some serious issues healthwise.

    I have just got back from a trip to the UK, was there to attend my nephews wedding and to see a neurosurgeon for a second opinion on my neck. Well the doctors were wrong here in Canada and I do need surgery on my neck, and will be having it sometime in November in the UK. He also informed me that he thinks I may of been misdiagnosed 18 months ago, and that I may not have FM, because since I stopped the medication "Rosuvastatin" 3 months ago, the severe muscle aches and pains have decreased greatly. I had been on these meds for two years. He told me there was a blood test available to diagnose FM and wanted me to have it done, unfortunately I was unable to get the test done in the UK as I ran out of time and had to return to Canada.

    The test is called Anti-polymer Antibody Assay (APA Assay), it is still waiting FDA approval, but the test is available through a Lab in New Orleans and also in the UK. The cost is $140 US. Not sure how much in the UK. You just need your doctor or hospital to arrange to send the blood test to them.

    I am not sure if we are allowed to post links on here, but there is a web site with all the information about this test, including scientific data etc.

    If anyone has had the test or knows anything about it I would appreciate any info anyone can pass on to me. As I am hoping to get a lab here to arrange for the test to be sent to the US this week.

    Hugs,
    brit

  2. MsOnlyMe123

    MsOnlyMe123 New Member

    I never heard of one but would be than happy to have it done. I would like to read about it and discuss with my doctor.

    About posting links on the board. There are several that I see. It's for informational purposes only. I don't see any problem with it. I would love to know it.

    Eileen
  3. brit_17759

    brit_17759 New Member

    Hi all,

    For anyone who is interested in and learning more about the blood test available for FM the link is below.

    http://www.autoimmune.com/FibromTest.html

    hugs,
    brit
  4. homesheba

    homesheba New Member

    i am by n.o. and i sure hope i can get this done!! thank you!!
  5. fieldmouse

    fieldmouse New Member

    I just read the wesite and to me it sounds like any of us can have this test done. All we have to do is get our PCP's to be interested enough to order the test as a trial basis for a patient. I think those patients should be us. We should ALL take this info to our PCP's and see what can be done about getting this test. It will never make it to the US if we don't do something about it. Our government will never get it here if they think it might help us to get better. They like us to be sick....ok..ok...I am sorry...I just get irritated and it is early and I hurt. I hope I didn't offend anyone....~Hugs~Mick~~
  6. dani78xo

    dani78xo New Member

    i'm really curious about this, because it seems really helpful, and from what I read, it can even help decide what treatments best for you.

    Has anyone taken this test? If it really does work, I want to look into it.
  7. fieldmouse

    fieldmouse New Member

  8. jole

    jole Member

    Bumping for others. Have always been told there are no tests for FM........
  9. dani78xo

    dani78xo New Member

    bump for information.
  10. lenasvn

    lenasvn New Member

    This is AMAZING!!!! We should be cheering right now!! I wish everyone would read this, this is a giant leap forward in the recognition of this DD!!!!!!!!!


    Helloooo everyone, READ THIS!!

    Thanks so much for posting this, and excuse my wild cheers!! LOL!

  11. Goldyfm

    Goldyfm New Member

    Hi, I can't wait to discuss this with my rheumatologist. I wonder if it is relative to persons with multiple medication sensitivities as well. I have a referral to a neurologist for next week and I may mention it to them. I am for anything that will help me feel human again.
  12. lenasvn

    lenasvn New Member

    I wonder if it will also be found to detect CFS? It is sort of at the other end of the stick as far as I am concerned.

    It would be wonderful if so!
  13. Mikie

    Mikie Moderator

    This has been such a well kept secret until now. Thank you so much for posting. Geez, I just got through telling someone here that there is no test for FMS. I'm very happy to be wrong!

    Love, Mikie
  14. MamaDove

    MamaDove New Member


    WHY IS THIS THE FIRST TIME WE ARE HEARING ABOUT HIS TEST???

    Yes, it's in caps because I AM screaming!!!!!!!!!!

    All of us have been going to docs all these years, this test was entered into trials in Sept.04 (expected)

    I was not surprised to see on that site was the other testing for antibodies for Gulf War Syndrome and Anthrax...Sounds like what some of us have always suspected, someone has known all along what we have...

    (%^%#%$&^^(*)(&*&%^%#%#@%$&^(*)(*)&*%^#$@#$#^&%*&)(*)(*)(*

    I am more than pissed on one hand and so relieved on the other...

    Please someone let us know how to approach this issue of getting tested...Do I call my rheumy? Do I tell others with FM and then bombard the rheumy demanding we all be tested...Ya know, strength in numbers...

    Thank you BRIT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I knew one day we would get some real ansers from someone on this board, I just knew it!!!!!

    Peaceful days may just be ahead~Alicia
  15. sleepyinlalaland

    sleepyinlalaland New Member

    was brought up on Pro Health some time ago. I thought (and STILL think) it is a very interesting developement.

    I think the subdued excitement is becuse it cannot detect ALL cases. That is, even the makers of test say that just because one does not test positive..it does not mean you don't have it. I think the more acute your case is, the more markers will be found. I may be wrong (duh), but my belief is that as time goes on, whatever activated the condition in the first place is less active, and may even go away....but what we are left with is...the DAMAGE (neurological).

    I wish more people WOULD get this test. It may not be THE answer for many of us, but it could be a solid start.
  16. brit_17759

    brit_17759 New Member

    Hi all,

    Bumping this for those who may not of seen it.

    Hopefully the more of us who ask for this test, the quicker it will get passed by the FDA.

    I am going to a clinic here in Canada tomorrow to see if they will take a blood sample and send it to the US for testing. The cost of the test is $140US, plus any lab expenses.

    Hugs,
    brit
  17. brit_17759

    brit_17759 New Member

    bumping.........
  18. lenasvn

    lenasvn New Member

    Oh, no, is this the case? I hope you're wrong, but suspect you're not. Is there any info on the www about what you just mentioned? I would like to read up on it before I bother my doc about a test that may not detect my anctient health problems.
  19. MamaDove

    MamaDove New Member


    Hi again brit,

    Since I saw this post this morning, I have been reading more and more and I have to say that I have more questions about this test...Nothing new with us fibromites, we tend to research til we drop, right?

    I printed off the press release from the Corgenix site and read through the material, over and over...Something kept sounding familiar to me...In the 5th paragraph, Russell P. Wilson says "The APA Elisa Test detected IgG anti-polymer antibodies in human serum"...It also goes to state that these antibodies are detected in the MAJORITY of fibro patients tested and the titers also correlate with the severity of symptoms...Hmmmmmmmmmmmmmmmmmm...

    Does this simply mean that by having the test ImmunoglobulinG, we can determine once and for all IF we HAVE FMS??????

    I have my lab results in which I was tested for these and have always 'thought' that these results MEANT something...I even posted for others to share their thoughts, but got zero responses...

    My results went like this:
    IgG 1516 mg/dL
    IgA 330 mg'dL
    IgM 301 mg/dL

    Also had a positive ANA of 1:1024, always been high on this test at different levels...



    The lab goes on to explain the following~The study displays modest generalized HYPER immunoglobulinemia, indicating chronic immune stimulation in a pattern often seen in the early OR active phase of a rheumatic disease. An elevated polyclonal IgM level is very unusual in SLE and may indicate coincident active viral infection or simply be related to the rheumatic process...

    My rheumy conducted all the other tests to determine that I indeed have FMS...

    My curiousity is also peeked by the Corgenix OTC stock information...The more I read, again, the more confused I become...This company produces the tests for autoimmune diseases and happens to have a way getting FDA approval quicker than others...Things that make you go HMMMMMMM...

    I also posted earlier and relayed that I noticed that other test kits were being 'tested' for Gulf War and Anthrax studying...Who is making these antibody markers available to this company??? I'm sorry, but I get very suspicious when I see FMS, Gulf War and Anthrax on the same page of a study...Call me crazy (or paranoid) but this has got my attention and should have EVERYONE else's as well...

    Let's keep this bumped for others to see and somehow we will get some answers...As for the blood test, I am now wondering if the IgG I have had done in the past was the actual diagnostic tool in determining my FMS...My test was done in March of 04, only months before this press release..

    I am praying you get some answers very soon and hope you will share what you find...It's things like this that give me hope that there will be one test for us and then we can fight for the cure...I am sure now that it is auto-immune in nature and I will keep my focus there...For me, the shoe fits and I am going to wear it...tehe

    Keep fighting brit, you are doing this for all of us, together we will find the reason for all our suffering...

    I hope I can sleep tonite, my mind is racing thinking we are onto something...

    Peace~Alicia
  20. brit_17759

    brit_17759 New Member

    Hi mamadove and all,

    Like you I have read and re-read the data I printed off from the Corgenix site many times and wondered if all the blood tests the majority of us have had at some time could be telling the doctors something they are not seeing. And of course asked myself how accurate the test is. As they do say in some people with FM the markers didn't show. But it could be the start of something good for all of us FM suffers.

    My last blood test results I had three months ago also showed raised IgG, IgA and IgM levels, but as yet the doctor hasn't linked these to be the factor in dianosing FM, although he could be missing something and not reading much into them! But you have raised a very interesting point in asking if these results could be the deciding factor in diagnosing FM. It would be interesting to hear from other people on here if their blood tests were also similar.

    Also I was at a support group meeting a few months ago, and the speaker did say that there is now medical evidence that FM is linked to the Auto-immune system.

    I hold hope that this APA Assay test is accurate in its findings, because if that were the case once they know the cause of FM, we could possibly be looking at further research being done for a cure for this DD.

    I will keep everyone posted if I hear or read anything else about this test or anything to do with Antipolymer Antibodies being a possible cause of FM. And if anyone has any info on the test or the APA being a factor in FM, then please share it with us, as this is a group fight for recognition and a cure.

    Hugs,
    brit