Hi, I look forward to connecting with other MCAS patients. Would love to support each other, help each other learn, and be a friend.

Mast cell activation syndrome

Visual Disturbances


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  • AzzieRivers


    Hi, I also have MCAS. I was diagnosed in 2013. I think I've had mild symptoms most of my life but I started with anaphylaxis & other more severe symptoms in 2003 and wasn't diagnosed until 2013. I'm on a slew of meds. Along with the mast cell component I have true allergies as well. It's horrible dealing with all these things. Have you gotten any control over your symptoms?

  • konijntje


    I have had symptoms since childhood, though didn't get anaphylaxis until my 30s. I'm on multiple IV meds as well as lots of other oral meds that are compounded, because I'm severely reactive to corn and anything derived from corn. IV meds have mostly kept me out of the hospital, but I'm still very symptomatic and have malnutrition/failure to thrive now due to so many food reactions. Due to my corn reactions, finding a feeding tube formula that is safe for me has been a challenge.

  • psw


    I started symptoms age 8. Major rashing, gi, head pain, vision changes. I was diagnosed in 2021 at age 52. I have had periods of time where I needed epi injections multiple times a week. Dealing with dismissive drs is the worst of it. I can't tell how many times I've been told it's all in your head. Ya, the rashing on 90% of my body for months, no food staying in me, needing intubation...all in my head.

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