May 15, 2025
Humour helps me more than healthcare system #EDS #EhlersDanlosSyndrome #AutonomicDysfunction #POTS #Fibromyalgia #nephroptosis #MastCellActivationDisorder #Autism #PeripheralNeuropathy #Gastroparesis #ADHDInGirls #audhd
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Hi, my name is nic_bridgetoalchemy. I'm here because of my own chronic illnesses, but also due to having just started my own business as an Integrative Health Coach. Now when I'm learning about resources and support, it is for me and my clients! Looking forward to learning alongside this wonderful community.
#MightyTogether #PTSD #Grief #EDS #POTS #MastCellActivationDisorder #ChronicFatigue #SjogrensSyndrome
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Hi, my name is AssertiveHummingbird. I'm here because im struggling with being stuck at home. My friends dont really get it and I feel misunderstood.
#MightyTogether #Depression #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Migraine
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Is this group still active? I am newly diagnosed with iMCAS. Anyone else out there? #MastCellActivationDisorder #MCAS #iMCAS
1 reaction Is this group still active? I am newly diagnosed with iMCAS. Anyone else out there? #MastCellActivationDisorder #MCAS #iMCAS
1 reaction Hi, my name is ShelbyN. I'm here because I was just diagnosed with HEDS and fibromyalgia after 20+ years. Most likely I also have MCAS but that appointment is a few months out.
#MightyTogether #Fibromyalgia #Anxiety #Depression #EatingDisorder
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Hi, my name is Spiritbapho. I'm here because
#MightyTogether #AutismSpectrumDisorder #ADHD #PTSD #EhlersDanlosSyndrome #PosturalHypotension #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder
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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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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.
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