Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Positive Cryofibrinogen and Monoclonal 1 tests

Discussion in 'General ME/CFS Discussion' started by Old Bones, Jun 8, 2016.

  1. Old Bones

    Old Bones Senior Member

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    Here's an example of "be careful what you wish for" -- in my case, a diagnostic test that proves something is wrong. A month ago, my GP said I'm only the second patient she's seen with a positive Cryofibrinogen test. As a result, I was sent for a Serum Protein Electrophoresis test which identified a protein band (Monoclonal #1) that most people don't have. Apparently, a positive result for these tests is most frequently associated with multiple myeloma, although there are other explanations (eg. connective tissue disease). Next week, I continue the investigation, with a specialist appointment and likely more testing.

    In the meantime, is anyone aware of these two tests ever having been linked to ME?
     
    cfs6691, Hutan, rosie26 and 2 others like this.
  2. TigerLilea

    TigerLilea Senior Member

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    Was your doctor testing for a specific reason, or were they just running more tests because of ME?
     
  3. Old Bones

    Old Bones Senior Member

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    @TigerLilea The Cryofibrinogen test was included on a list I took to my doctor to look for a treatable cause of Small Fiber Neuropathy and icy cold hands and feet. The Serum Protein Electrophoresis test was recommended by the laboratory, after my Cryo test was positive, as the first step towards ruling out multiple myeloma and other nasty possible diagnoses (fingers crossed). Didn't work out the way we'd hoped. Based on my GP's referral letter, the appointment with the internal medicine specialist is intended to determine the cause of these two abnormal test results, plus a few kidney abnormalities recently discovered. My GP has made the specialist aware of my medical history, but the discussion isn't supposed to include any re-evaluation of my ME diagnosis.
     
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  4. Kati

    Kati Patient in training

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    Sending best wishes @Old Bones, hopefully things turn out easy to treat and most favorable prognosis.
     
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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Jeezus, it it ain't one thing its another - sending you healing and de-stressing vibes @Old Bones
     
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  6. TigerLilea

    TigerLilea Senior Member

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    Good luck, @Old Bones . Hopefully you'll get a good diagnosis that isn't serious. It's always worrying any time we have to go through testing.
     
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  7. Justin30

    Justin30 Senior Member

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    Bring out the Stem Cells we need to regenerate.....i heard something about fibinogen in ME/CFS larely not sure if its the same thing but from what i can remember is that a dr in the states was finding high levels of fibrinogen in both ME patients and some FM patients
     
  8. TigerLilea

    TigerLilea Senior Member

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    I don't think that fibrinogen is the same as cryofibrinogen. Ken Lassesen believes that there is a connection between fibrinogen and CFS/ME.
     
    Justin30 likes this.
  9. Mij

    Mij Senior Member

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    I was tested through HEMEX and mine was normal.
     
    Justin30 likes this.
  10. Mij

    Mij Senior Member

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    @Old Bones I hope everything goes well. Best wishes your way.
     
    rosie26, Justin30 and Old Bones like this.
  11. knackers323

    knackers323 Senior Member

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    hi @Mij when did you get tested with hemex? seems they are no longer. you know who does these tests now? thanks
     
  12. Mij

    Mij Senior Member

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  13. Sushi

    Sushi Moderation Resource Albuquerque

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    Hemex was bought by LabCorp. The ISAC panel is now offered by Esoterix, Inc.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    @Old Bones I was curious what happened with these tests and hoping you can post an update when you feel up to it. Hoping you are doing okay.
     
  15. knackers323

    knackers323 Senior Member

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    @Sushi thanks. do you know if they are available to those outside the US? havent been able to contact them with the time differences
     
  16. Sushi

    Sushi Moderation Resource Albuquerque

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    I'm afraid I don't. I haven't been in contact with them since LabCorp bought them. There is probably an email address on their site.
     
  17. knackers323

    knackers323 Senior Member

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    that would make it easy but they don't seem to have one. ill work it out. thanks
     

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