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Quick Summary of diagnosis and treatment for Mast Cell Disorders -Have I got this right?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by redrachel76, Nov 15, 2012.

  1. redrachel76

    redrachel76 Senior Member

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    I find it difficult to trawl through the forum to find a simple list of diagnosis and treatment list for Mast Cells disorders.
    So I have made my own.
    Please correct any mistakes I’ve done

    Diagnosis: check list of symptoms:
    CFS is a mast cell disorder.
    http://forums.phoenixrising.me/index.php?threads/me-cfs-is-a-mast-cell-disorder-hypothesis.18437/

    Skin biopsy Serum Tryptase blood test Bone Marrow biopsy for presence of mast cells and to test tryptase 24 Hour N-Methylhistamine Urine test
    Allergy tests
    Source: http://www.mastocytosis.ca/diagnosis.htm
    There is also the thread
    "Four M.E/CFS Tests almost no one has ever done."
    http://forums.phoenixrising.me/index.php?threads/the-four-me-cfs-tests-almost-no-one-has-ever-done.19624/
    Are these Four ME/CFS tests also related to Mast cell disorders????
    Treatments
    http://www.mastocytosis.ca/treatment.htm

    Is the www.mastocytosis.ca link I've used accurate?
    If anyone knows anything, please correct any mistakes so that I can figure out if this can help me or not. It will be great to have a simple summary for those of us who don't know if it relates to them.
  2. camas

    camas Senior Member

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    It is a bit confusing the way things are scattered about. For Mast Cell Activation Syndrome (MCAS) these are probably the two best sources:

    Mast Cell Activation Disease: A Concise Practical Guide for Diagnostic Workup and Therapeutic Options (2011) by Gerhard J. Molderings, Stefan Brettner, Jürgen Homann, and Lawrence B. Afrin

    MCAS Primer for Physicians (2012) by Lawrence B. Afrin, M.D., Division of Hematology/Oncology, Medical University of South Carolina

    The links I have in my signature to the Canadian Mastocytosis Society cover both MCAS and Mastocytosis. If an overabundance of mast cells show up in a biopsy of say the colon, stomach, skin, bone marrow, etc. it's considered frank Mastocytosis.

    Also helpful is this video from the U.S. Mastocytosis Society which covers both MCAS and Mastocytosis.





    Please note that one study (see table 3) showed that only 17% of those with Mastocytosis experience recurrent anaphylaxis. So while this symptom is often emphasized, for obvious reasons, it's not a problem for the majority of patients.

    The Mastocytosis Patient Experience is also worth reading to see the commonality between ME/CFS and MCAS/Mastocytosis.

    From what I've read, the treatment for MCAS and Mastocytosis is the same.
    EMilo, Questus and nanonug like this.
  3. nanonug

    nanonug Senior Member

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    There are essentially three "basic" tests for mast cells disorders: serum tryptase, 24-hour urinary N-methylhistamine and 24-hour urinary Prostaglandin D2. There is more stuff that can be done, all the way to bone marrow biopsy if mastocytosis is suspected. However, these three tests are, in my opinion, a good start. If you want to "help" a doctor help you, you may take this with you: MCAS Primer for Physicians. It was put together by one of the leading researchers in the field (Dr. Afrin).

    Good luck and let me know if you have any questions.
    merylg likes this.
  4. redrachel76

    redrachel76 Senior Member

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    Thanks Nanonog.
    Just having it summed up in 3 "basic" tests really helps.

    The videos are also helpful Camas.

    I should rename this thread "beginners" except my first post is such a garbled peice of waffle, and I don't know how to rename titles.
    Thanks for the explanations
    camas likes this.
  5. camas

    camas Senior Member

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    Yeah, the videos are what really caught my attention particularly when they showed and described the behavior of my odd skin lesions.
  6. nanonug

    nanonug Senior Member

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    Yeap, the videos were the thing that first alerted me to the possibility that ME/CFS is just a lack of a proper diagnosis!
  7. MR AIDAN G WALSH

    MR AIDAN G WALSH

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    let me know please if 'all' your test results come back please...keep in touch, also they do not know cause which could be possible ionization radiation...would be nice to atleast get a proper diagnosis...MR AIDAN G WALSH SOUTHAMPTON, U.K. 'FACEBOOK AIDAN WALSH 'GOLDEN ANGEL AS PROFILE PIC'
  8. redrachel76

    redrachel76 Senior Member

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    I did not do the tests and have no test results.
    I found it too hard to get my doctors to run the tests so I decided to try the treatments for mast cell disorder and see if they work.
    I tried Ketotifin and Allegra because they were easy to get from docs as I suffer allergies a lot. They did not help me, made me more brain fogged.

    I am also permanently on clonex. It's supposed to stabilize mast cells but didn't help me.
    So I don't think I have Mast cell disorder.

    Do you think ionizing radiation could cause mast cell disorder or bad test results?
  9. Aquila

    Aquila

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    Does anyone know where you can get the 24-hour urinary N-methylhistamine and 24-hour urinary Prostaglandin D2 privately in the UK?
  10. camas

    camas Senior Member

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    Maybe someone at the UK Mastocytosis Society would know where you could have this done?
  11. Aquila

    Aquila

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    Thankyou! I'm looking at all your links in your footer it looks really helpful.
    camas likes this.

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