Mast Cell Activation Disorder

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I have MCAS

Yesterday I was officially diagnosed with mast cell activation syndrome (MCAS) a disorder in which my mast cells produce histamine when there is no threat (allergy) identified in the body, causing allergic reactions for no reason. We’ve known for a while that I’ve had MCAS but it hadn’t been officially diagnosed until yesterday. I often have flair ups and have had to epi pen myself 3 times in the past 6 years. There’s no cure for MCAS but there are ways to manage symptoms. I feel lucky to be alive and grateful to live in a day and age where modern medicine exists. Just as I don’t let bipolar define who I am, I won’t let MCAS run my entire life. I will manage symptoms as they come up and will conquer this disorder. I will not let it defeat me. #MastCellActivationDisorder #Bipolar1 #MentalHealth #MightyTogether

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Diagnosis

Does a diagnosis of MCAS make much difference? If there is no real treatment, only managing symptoms, is it worth the fight to get a diagnosis? I'm in Australia.

I spoke with my GP yesterday and suggested I might have MCAS as it is the only thing I can find to explain my anaphylaxis reaction to the fat content of soy. His first step was to send me for a blood test to check if I am Celiac. Given I don't react to wheat I can already tell him the answer to that. (The same doctor sent a friend for a blood test and then confirmed she wasn't post-menopausal after she went to see him about heavy periods 🙄🤦)

I have severe anxiety and agoraphobia so if a diagnosis is not going to make a difference I would rather continue on as I have been for the past 6-7 years and just avoid my triggers where possible, otherwise I think I need a new doctor.

#MastCellActivationDisorder

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The Things You Really Want In Life .. You Have To Plan For

“So what are your plans for the future “

My old councilor once asked me .

“ Hope I have one “ I responded with a witty chuckle .

He busted up laughing then said “ No really .. what are your plans for the future “.

I had to be honest and tell him I stopped planning for the future long ago .

Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .

Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “

Sorrow filled his eyes as he told me .

“ The things you really really want . You have to plan for .

I want you to do one thing that will go towards your future “

And the thought of that terrified me .

( Yep I am THAT big of a commit-a - phobic )

But here I am 3 years later .
And Today I went to the bank and finally took that advice .

And it felt so good .

Most people in my life viewed this act as something super small

Heck it probably is

But it gave me a bit more hope in the big beautiful “ maybes” the future might bring

And in the season of life I am in . That little step meant everything

I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain

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The Things You Really Want In Life .. You Have To Plan For

“So what are your plans for the future “

My old councilor once asked me .

“ Hope I have one “ I responded with a witty chuckle .

He busted up laughing then said “ No really .. what are your plans for the future “.

I had to be honest and tell him I stopped planning for the future long ago .

Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .

Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “

Sorrow filled his eyes as he told me .

“ The things you really really want . You have to plan for .

I want you to do one thing that will go towards your future “

And the thought of that terrified me .

( Yep I am THAT big of a commit-a - phobic )

But here I am 3 years later .
And Today I went to the bank and finally took that advice .

And it felt so good .

Most people in my life viewed this act as something super small

Heck it probably is

But it gave me a bit more hope in the big beautiful “ maybes” the future might bring

And in the season of life I am in . That little step meant everything

I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain

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Live Each Day Like Your Waiting For A Package From Amazon

Years ago when I was heavily dealing with some of “side effects “ of life threatening chronic illness
My councilor gave me probably the best advice I’ve ever head .

“ Live every day like your waiting for an exciting package from Amazon “

And explained to me that often the joy and excitement we get , is not really from the item itself . But it comes in the waiting , the planning and the prepping for something great to arrive.

( I think I can low key blame my shopping addiction on him 😂😉)

But with the chaos I know is coming
I’ve found myself

Re learning the importance of that statement

Though illness has turned me into a realist .

Most of the time being a realist is vastly overrated.

Sometimes you have to mentally plan that interior design room makeover
( that may take a year or more to actually get done )

Step by step plan the dream garden
( that your probably to sick to actually do )

Dream of moving to sea level ( to help your crap lungs ) to an equestrian community
and start from scratch

( You all live in this economy and have seen the housing market.. you know this is the biggest day dream of them all 😂)

But gotta dream of vacations your going to take , places your going to see , things your going to do .

Even if it’s just for the fact that , dreaming about a brighter tomorrow
Makes getting out of bed today a bit easier .

Sure there is a GIANT chance the things you dream of won’t happen .

But even the most harsh of realist , can’t deny that there is a chance that they might .

I say , believe in the good that’s to come ❤️

#smileon🐷 #ChronicPain #ChronicIllness #raredisease #hope #MightyTogether #pcos #CommonVariableImmuneDeficiency #autommunedisease #MastCellActivationDisorder #MightyTogether

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I'm new here!

Hi, my name is sophplus5. I'm here because I have EDS, POTS, MCAS, Lyme disease and have been in extreme constant pain for 2 1/2 years. Withdrew from high school because of the pain, nausea and dizziness. Finding support / friends would help the isolation

#MightyTogether #EhlersDanlosSyndrome #ChronicPain

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I'm new here!

Hi, my name is Thankfuldaughter3462. I'm here because I am looking for information on EDS/POTS and MCAS. I am also looking for a community to share information and support.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia

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