My Experience of Mast Cell Activation Syndrome as an Autistic (with info from
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- Опубликовано: 26 авг 2024
- June is International Mast Cell Disease Awareness Month so I thought I'd make a video on my experience of Mast Cell Activation Syndrome. I've tried to keep things very brief in this video as there's just so much I could share with you, but I'll maybe make some more videos on MCAS as time goes on.
If you also have MCAS, you have my every sympathy and I'd love to hear about your experience of the condition too. 🧡
For more information on MCAS, visit Mast Cell Action at www.mastcellac... and they're also on RUclips at / @mastcellaction
There are other great resource sites about mast cell disorders including:
Naughty Little Mast Cells: www.naughtylit...
Mast Attack: www.mastattack...
Mast Cell 360: mastcell360.com/
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Other videos you might be interested in:
I Was Diagnosed as Autistic at Nearly 50 (My First Video!)
• I Was Diagnosed as Aut...
10 Reasons Why I Thought I Was Autistic
• 10 Reasons Why I Thoug...
"I Think I'm Autistic, What Do I Do?" - Thoughts From a Late Diagnosed Autistic • “I Think I'm Autistic,...
#mcas #mastcellactivationsyndrome #actuallyautistic
🚨 Please note that I can't provide any information on MCAS doctors. If you're looking for an MCAS specialist, I'd recommend that you join some MCAS Facebook groups and search/ask for recommendations. If you're based in the UK, you could maybe also contact the charity Mast Cell Action for guidance. Hope this helps! 👍
Thank you for sharing this Lizzie, we have the same issues here in Australia with MCAS.
My battle went into full swing early 2020, systemically. But I do believe it has been under the surface the majority of my life.
As of 2021, I became intolerant to all plant foods, my body dictating a meat only diet ... And had so much more going on ... But very similar to your experience.
I also have POTS symptoms and am in the process of diagnosis for Connective Tissue Disorders, specifically EDS and/or Marfan Syndrome.
All of which, again combine together with ASD, MCAS and POTS.
The Geneticist who is doing my diagnosis said unfortunately, I will continue to be gaslit in moving forward.
I am in the process of creating some videos with my own journey, because there are few avenues left ... And like you, I don't have the money for private specialists.
Sadly, I think creating awareness is all we have.
I'm so sorry to hear about your experience too, Rebecca. It's a truly awful condition and, like you, I suspect I've had a mild form of MCAS for most of my life before it truly revealed itself.
Your videos sound like a great idea in sharing your journey. Although facebook groups are also a great resource for sharing info and experiences, I think it can be a bit frustrating in that few people can afford all of the (seemingly endless) treatments/supplements/therapies mentioned in them. Sending solidarity! 🧡
Good grief it sounds horrific lizzie you truly have been through it. My heart goes out to you😢. I really hope you can find more ways to help manage your symptoms and help improve your quality of life. I dont really go to the doctors much at all but i have been for fatigue. Despite eating a very healthy diet veg , fruit, nuts, seeds, sardines, yoghurt, kefir, chicken turkey, eggs, olive oii etc. The doctors nurse has done blood tests but they have come back fine. I feel drowsy and weak most of the time it's really dragged me dowm. Thank you for your informative video on mcas, i really hope you can add more foods to your diet at some point soon and also be able to leave the house more❤🙋♂️
Thanks, James. I'm just grateful the internet exists as I would never had found out about MCAS otherwise! I'm sorry to hear about your symptoms - it's so difficult to be taken seriously by GP's for invisible illnesses. 🧡
It's such a complex condition. Well done for sharing your experience!
It can be *quite the nightmare* at times. Thank you! 🧡
My 18yo daughter seems to have high functioning ASD. Highly intelligent but easily physically overwhelmed and burnt out. Had eczema & food allergies & viral asthma since a baby. Still allergic to dairy. Very fussy and particular with which foods she’ll eat. Sensitive skin. Also good at art. She spends much of her free time in her darkened bedroom. Not v interested in clothes shopping. She has friends thankfully but I can see that becoming difficult as they find partners and start families. I cannot see her coping with having any children, she would just bun out, and also would be at a complete loss with the daily necessities of cooking, cleaning etc. We have a long line of highly sensitive people in the family. My maternal grandmother was an only child, an introvert, and 100% lived for her garden, though she also played golf. She may have had more spark to her before she lived with my grandfather who had anger issues. My mother is also obsessed with her garden. Anyway so all these traits get passed down through the line. I can’t help thinking it may more be an issue of having specific genetics that are not functioning properly to absorb proper nutrition so we’re chronically deficient and unable to detox, and all the flow on effects from that. Plus having highly sensitive personality types, though that could also be due to physical sensitivities. In either way it’s a hard life.
Yes, it's certainly a hard life for many of us 🧡
I am suffering from fibromyalgia, and I don't tolerate the medication. "Another pill an I lay down and die" I said to my son two years ago. It was like tooth pain in my limbs. What helped in my case, thank God, was CBD. I am not completely free from pain, but it helps me a lot, and I've got my life back.
I'm glad CBD's helped you. I know it helps a lot of people with chronic pain but I can't tolerate it personally 🧡
It sounds like it must be terribly unpleasant to experience such a nebulous range of symptoms; but I also find it fascinating that they seem to parallel autistic overwhelm i.e. heightened sensitivity/discomfort just in a more physiological sense.
Partly in response to your account of smoke sensitivity I recalled that I first started learning Butoh here during a particularly bad wildfire season, as a more cognitively engaged alternative to yoga (I found all the breath monitoring and static posing rather tedious); I wonder if Butoh may prove a therapeutically productive tool for living with MCAS, as its mental exercises are intended to engage the mind in ways that keep the body on its toes, as it were (e.g. engaging one's muscles as if running even as one is actually moving very slowly; it's like a physical surrealism.)
Ooh, interesting, I hadn't thought of MCAS in that way. I'll admit that I've never heard of Butoh. I do pilates every morning as I just wouldn't be able to move if I didn't, but I have issues with a lot of movements because of a dodgy gallbladder, so it might be something to look into at some point (though I've dreadful problems with concentrating! 😆) I'm glad you've found it helpful. 🧡
Good luck and I'll keep watching.
Thank you, Suzanne 🧡
I had periperhal neuropathy and a yucky feeling (sort of like nasuea but not quite) while around higher densities of cellular/bt/wifi. The naturopath told me it was a bit of an mcas reaction. I don't have bad symptoms now but still a bit in certain usage situations.
Right now I do perceive the smoke when the aqi level is above 40 and I will often feel hung over when it is over 70. It seems my sense of smelling smoke has really increased and I am feeling psychologically very irritated by neighbors smoke coming into my unit but this is problematic because while the amount coming in is causing me distress it is not enough for an outsider to conclude there is anproblem that needs addressing. I am on the spectrum but so is the heavy smoker who lives downstairs.
Thank you for sharing. I'm very sensitive to all sorts of smells but I've found an air purifier to be really helpful 🧡
Would like to connect with you more- fellow Mcas er
The NHS is an absolute joke. Except it’s not funny, it’s outrageous.
What private Dr did you see online????
There are a few MCAS doctors who offer online consultations, though waitings lists are long - their names/details very often come up in the UK Mast Cell Activation facebook groups 👍
@@CreativeAutistic thanks 🙏
@@CreativeAutistic I’m having trouble finding a Dr online and I don’t use FB. I’m really interested in a Dr who would be confident to say it looks like MCAS via an online appt because I’m an immigrant and still can’t drive in this country. Could you please tell me the doctor you mentioned? You could delete it after I reply that I’ve seen it or I could leave my email here?