Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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MCAS and vascular issues

Discussion in 'Mast Cell Disorders/Mastocytosis' started by ebethc, Mar 11, 2017.

  1. ebethc

    ebethc Senior Member

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    what kind of vascular issues does MCAS cause? I feel like I"m walking through molasses when it's humid... My sinuses swell up, I feel like I'm holding on to so much water... my joints kill me, I feel bloated.. my eyes are itchy.. I've noticed this other times, too, but humidity is a biggie...
     
  2. keenly

    keenly

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    My blood vessels swell in legs. I get fluid around knees. It is very visible. I am sure this is due to mast cell issues, causing a chemically induced allergic vascullitis.

    It is like my vessels are chronically dilated, which I believe histamine can do.

    Mast cells are an area that needs more research, I am sure they play a HUGE part in ME/CFS/POTS.
     
  3. btdt

    btdt Senior Member

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    @ebethc
    @keenly
    I don't have a mcas diagnosis it was suggested to me by another person on this site... i have not read the suggested book or bought it yet. I am trying to work my way thru a lot of information to sort out what my next best step is... and it may take some time considering the amount of varied information I need to sort and my lack of cognitive resources.
    All that said I cannot function in humid weather I can't. Migraines cognitive funk reactions to chemicals had me locked in one room most of last summer. I had an mri years ago at the bottom of the page it was suggested vasculitis could account for the findings and further testing was recommended...no further testing was done.

    I am curious if previous posted have had similar results on brain mri? have you found successful treatment diagnosis since your posts?

    I have a long history with me cfs fibro mcs so far.

    Are these prior dx part of your experience?
     
    ebethc likes this.
  4. btdt

    btdt Senior Member

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    My MRI testing was ordered by a neurologist google suggests a different specialist
    "
    Management[10]
    This is concerned mainly with symptom control, as there is currently no cure. Systemic mastocytosis is usually managed by haematologists."
    https://patient.info/doctor/mastocytosis-and-mast-cell-disorders

    I am not sure if this sort of doctor would be best to dx mcas or not?

    Who here has been dx and what type of doctor manages your illness.
     
  5. ebethc

    ebethc Senior Member

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    What is vasculitis?

    Humidity and particulate matter are the bane of my life
     

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