Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to ...Treatment: A Case Series, 2023, Weinstock et al

Discussion in 'Immune: Autoimmune and Mast Cell Disorders' started by rachel76, Nov 20, 2023.

  1. rachel76

    rachel76 Established Member

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    https://www.mdpi.com/2075-4426/13/11/1562
    Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to Mast-Cell-Directed Treatment: A Case Series


    MCAS paper mentioned by Dr Kaufman. It is amazing.
    One case talks about MCAS causing psychiatric illness then later developing into POTS and severe fatigue.
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Hi @rachel76,

    To me this is amazing only in that it is extraordinary that anyone should publish what is no more than pseudoscientific make-believe.

    They say that one person in 6 has MCAS and that it is due to a defect on a controller gene. This is plain nonsense.

    There is no indication how they chose the patients they describe or why they think their symptoms have anything to do with mast cells.

    I see nonsense of this sort as quite damaging to PWME because it encourages the idea that they are tied up with false beliefs about non-existent illnesses.
     
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  3. Trish

    Trish Moderator Staff Member

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    https://www.mdpi.com/2075-4426/13/11/1562

    Abstract

    Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various neurologic and psychiatric disorders, including headache, dysautonomia, depression, generalized anxiety disorder, and many others. Although MCAS is common, it is rarely recognized, and thus, patients can suffer for decades. The syndrome is caused by aberrant mast cell reactivity due to the mutation of the controller gene.

    A case series is presented herein including eight patients with significant neuropsychiatric disorders that were often refractory to standard medical therapeutics. Five patients had depression, five had generalized anxiety disorder, and four had panic disorder. Other psychiatric disorders included attention-deficit hyperactivity disorder, obsessive compulsive disorder, phobias, and bipolar disorder. All eight patients were subsequently diagnosed with mast cell activation syndrome; six had comorbid autonomic disorders, the most common being postural orthostatic tachycardia syndrome; and four had hypermobile Ehlers-Danlos syndrome.

    All patients experienced significant improvements regarding neuropsychiatric and multisystemic symptoms after mast-cell-directed therapy. In neuropsychiatric patients who have systemic symptoms and syndromes, it is important to consider the presence of an underlying or comorbid MCAS.
     
  4. Trish

    Trish Moderator Staff Member

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    The article gives a huge list of symptoms for MCAS, and a prevalence of 17%. I assume this means they are calling all common allergies and sensitivities 'MCAS'.
    I looked at the treatment section, which starts with drugs such as antihistamines and goes on to include some less commonly used drugs. This is the beginning of the treatment section:

    The limitations section of the article pretty much wipes out any conclusions that can be drawn from this case series, so I don't think any definite conclusions can be drawn:
     
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  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Is there an explanation somewhere? Is this an inherited mutation or one acquired later in life? What is the controller gene?

    Edit: answering my own question here. The gene seems seems to be KIT. They are somatic mutations. This article says 5-10% prevalence of MCAS. https://www.sciencedirect.com/science/article/abs/pii/S1040842814001498
     
    Last edited: Nov 20, 2023
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  6. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yea, as per the above comments, it annoys me, when I read claims re MCAS on Twitter etc, since we need to focus on asking for research that could actually help e.g. for genetic studies like:
    • DecodeME; &
    • studies aimed at finding rare variants i.e. which identify genes & pathways to focus research on.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That paper says that there are lots of genes potentially involved as well as KIT and as far as I know there is no reason to think 10-17% of the population have any illness related to these genes - unless they are just referring to old-fashioned atopy.
     

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