Mast Cell Activation Disorder

So way back in 04, I died. I came back in 05. I was in a coma for 3 months when I had a massive and regular stroke, lung failure and everything that could go wrong.. specialists were too scared to be of any help so I wound up researching everything and advocating for myself while undoing stroke damage, what I could, healing my gut, facing trauma, numerous surgeries, repeated pneumonia, etc. with abusive parents. As caregivers. They’ve spent over 20 years controlling me through narcissistic abuse. I can’t get my basic needs and food. I have MCAS, HEDS, POTS, Audhd, CPTSD, fibromyalgia, RA, Anemia, etc. I spent decades surviving while peers met people and found jobs, making lives for themselves and losing touch with everyone because fun me wasn’t alive. I was too much. I got COVID in 24, that activated mcas and it’s been downhill. All the work I did isn’t suitable for me now. I have to change it all. APS, DRP, CRI, etc., all failed me. I feel I’ve nothing in common with people. I don’t want to accept that this is how I am. I can’t get through to my parents, I don’t get to eat often. I never gave my words or thoughts together for my telehealth visits and I feel terrified of the worst case scenario thanks to my evil parents. I’m embarrassed as well. I have providers but they have not experienced my life and there’s only so much I can take from people where I see patterns immediately informing me that I’m wasting my time. So, what does someone like me do? I guess I’m one in many billion and alone. I’ve tried to connect with others. I truly don’t even know what to do now. Everything scares me and I don’t know I can’t trust or feel compassion as I once did. I don’t like this for myself. This isn’t me. But.. it is.. anyone else? #ADHD #Autism #MastCellActivationDisorder #CPTSD #PTSD #Perimenopause #Coma #Anxiety #BrainInjury #ComplexPosttraumaticStressDisorder #EhlersDanlosSyndrome #JointHypermobilitySyndrome #PosturalOrthostaticTachycardiaSyndrome #Abuse

Just saying hi. Having more frequent migraines with neuro symptoms like facial numbness. Lots of fatigue and MCAS symptoms.

Hi, my name is BaileyF. I'm looking for a support system. I've been met with hatred and told I'm not actually Ill online. I've recently been to a new doctor who has set me on the path to be officially diagnosed with EDS, POTS and possibly MCAS. I've officially been diagnosed with AUDHD and C-PTSD back in February and I just want to be able to talk to people who are dealing with similar issues to just vent and receive advise.

#MightyTogether #Anxiety #Depression #AutismSpectrumDisorder #PTSD #ADHD #ehlers-DanlosSyndrome

Hi All. My name is Leslie and I am looking for my tribe. I am struggling with Chronic Lyme along with Bartonella and Parasitic co-infections. Recently tacked on mold poisoning and MCAS. Also so very ADHD and perimenopausal. I was treated for Lyme with doxycycline years ago, but COVID brought out all the hidden nasties just waiting for a depleted immune system. And just like that, everything I worked so hard for is gone and I am just trying to survive. I am an eternal optimist, but this is heavy and so isolating. Just having a place to read others stories is pretty awesome right now. ❤️ It brings hope.

#MightyTogether #ADHD #LymeDisease

Hi, my name is Smallflower. I'm here because

I’ve been living with histamine issues but haven’t been diagnosed with MCAS yet, which I think it is#MightyTogether

Hi, my name is Btrfly6499. I'm here because

#MightyTogether #Migraine #MastCellActivationDisorder #atypicaltrigeminalneuralgia #EhlersDanlosSyndrome #Atypical #hypermobile #POTS

I’m writing this on behalf of my sister-in-law, who has Mast Cell Activation Syndrome (MCAS). She’s been in the hospital for two weeks now and things are getting worse, not better.
She was admitted because her ability to eat had declined so severely. She was already clinically malnourished and had lost over 40 pounds. For a long time the only foods she could tolerate were chicken and yams—and even that has now become impossible. She’s barely able to eat anything.
The hospital started her on TPN. When it wasn’t going well they doubled the dose. She had a reaction, they stopped it completely, and she’s been dealing with the after-effects of that as well.
Right now she doesn’t feel like she’s receiving attentive, comprehensive, or compassionate care. She’s struggling to advocate for herself, and it doesn’t seem like the doctors are really listening. Several professionals at the hospital have openly admitted they’ve never even heard of MCAS.
She has an appointment with an MCAS specialist in November, but at the rate she’s declining we’re scared she won’t make it there without better support. We’re actively looking for hospitals or medical centers that actually understand MCAS, take it seriously, and have the capacity to care for someone this complex.
If you or a loved one has been treated somewhere that listened, understood mast cell disease, and provided real nutritional and symptom management support, please share the hospital or program name. Any experience—good or cautionary—would help us so much right now.
We’re just trying to keep her stable and get her the kind of care she deserves until she can see her specialist. Thank you for reading, and thank you in advance for any guidance you can offer.

I’m writing this on behalf of my sister-in-law, who has Mast Cell Activation Syndrome (MCAS). She’s been in the hospital for two weeks now and things are getting worse, not better.
She was admitted because her ability to eat had declined so severely. She was already clinically malnourished and had lost over 40 pounds. For a long time the only foods she could tolerate were chicken and yams—and even that has now become impossible. She’s barely able to eat anything.
The hospital started her on TPN. When it wasn’t going well they doubled the dose. She had a reaction, they stopped it completely, and she’s been dealing with the after-effects of that as well.
Right now she doesn’t feel like she’s receiving attentive, comprehensive, or compassionate care. She’s struggling to advocate for herself, and it doesn’t seem like the doctors are really listening. Several professionals at the hospital have openly admitted they’ve never even heard of MCAS.
She has an appointment with an MCAS specialist in November, but at the rate she’s declining we’re scared she won’t make it there without better support. We’re actively looking for hospitals or medical centers that actually understand MCAS, take it seriously, and have the capacity to care for someone this complex.
If you or a loved one has been treated somewhere that listened, understood mast cell disease, and provided real nutritional and symptom management support, please share the hospital or program name. Any experience—good or cautionary—would help us so much right now.
We’re just trying to keep her stable and get her the kind of care she deserves until she can see her specialist. Thank you for reading, and thank you in advance for any guidance you can offer.