These Are The Symptoms Of Mast Cell Activation Syndrome

Most horrible acute symptoms of mine are neurological and cardiac. Wish it was just skin ot less disabling ones, so I could work properly.

Thanks for spreading awareness! 🫰

Histamines! Can’t live with them! Can’t live without them!

I have this. It's awful. Alcohol makes it worse and I'm super sensitive to it now

I am afraid of losing my best friend to Mast cell. It started after she was in a car accident.

OMG, you are describing me. I hate brainfog. It really steals who you are and have known to be.

Yep. Ive had kinda tolerable symptoms (IBS) for years. Really bad in Dubai/China where heat humidity are high. Heavy eyes, IBS, UTI infections from being alive… Then this summer started getting a weird headache. Didn’t stop. Then BAM: balance gone, sudden severe depression, muscular weakness (used to be perfect balance and lots of working out). Kidneys had sudden pain. Anaphylaxis. Thanks to ChatGPT I got Mast Cell info. Saw an internist - tested positive for current Epstein Barr virus. Wondering if I’ve had that forever or if it triggered the Mast Cell. No way to know, I s’pose. But the antihistamines and mast cell blockers worked very well. Headache still there. But I wonder if when the heat subsides that will also…..

I think I might have this, ive been mostly bed ridden I always feel out of breath and tired all the time. Hopefully I get answers soon.

Wow, you just summed up my daughter. She’s been diagnosed with POTS , JIA, Asthma, Eczema, Gerd , Dermographia, all kinds of digestive issues, has IBS symptoms (not diagnosed) and her dr told us mass cell issues, but not diagnosed MCAD. And possible EDS. Now she’s having trouble with her heart. Because her blood pressure goes so extremely high to extremely low. She is also having trouble with multiple utis , kidney issues. The list goes on .
And she just turned 20. Unfortunately we no longer have health insurance. Nor can we afford to buy it outright on our own. So she just suffers . It’s hard as a Mom to feel so helpless . All I want to do is help my child. Especially with her being so sick .
Life is hard sometimes.

Have you heard of the triad between MCAS, Ehlers Danlos, and POTs? The video suggested it is a combination of medication and retraining the nervous system. It's not exactly my diagnosis but in the same family and the symptoms fit, what type of doctor treats this?

I wish I could find a doctor to listen and help instead of just sending me to specialists who give up after a few years such a ENT and lung doctors. Autoimmune doctors give up after one blood test and an allergy test that lights up like a Christmas tree.

I'm so intrigued...I've been struggling with severe "LPR" for five years...but even before that started, I started developing all these other symptoms you mentioned here. LPR treatment was rendered useless....I'm still working with a gastro to make sure there's no other problems. However, I've had constant post-nasal drip, tightness in the throat after literally anything I eat, dry cough, heart flutters, chronic fatigue and headaches, moments of standing up only to nearly pass out, pain in my joints and muscles...chiropractor couldn't even help me, itchy skin ALWAYS. Regular OTC antihistamines do nothing...Pepcid does nothing for my reflux symptoms. I've occasionally had pelvic/bladder pain for no apparent reason as well. I'm really starting to wonder...thanks for your video!

This is me hypermobile rashes all the time I react almost everything I had mold exposure, which activated my limes disease, and Epstein-Barr palms of my hands are red and itchy. All over all the time my scalp is the worst ice burning itch. All I ever wanted to be was taken seriously too they think you’re crazy and you’re not and it’s a living hell fix your heart rate your autonomic nervous system affect you from the top of your head to your toenails

If immunity trigger high dose vitamin D will fix it, fixing leeky gut also will fix most of the problems mentioned

Why does he look like CGI?

My blood pressure is up... I've also been diagnosed with Mixed Connective Tissue Disease. Struggling to breathe right now. I had a bout of sinusitis after eating apples of all things 😢😢😢

ok cool. thanks.
now what????
some guidance please

I did this test lab results came back and my results are 5.3 and my reference range is 11.0 does this mean I have mast cell activation?

I also have been getting hives feeling faint and breathing difficulties I was hospitalized and sent home with an epi. No allergies but recieved my lab results and waiting to hear from the doctor at the end of the month.

Also my leukocytes scored a high of 4.0

My question is am I in the normal range? Or do I fall under the diagnosis of mast cell activation?

I’m trying to watch every video out there to determine what my son has. He has chronic mucus, blows his nose constantly, spits phlegm up non stop. Yes we’ve been to allergy Dr, CT scan, bloodwork, homeopath, you name it. Still can’t figure it out. We removed gluten, dairy, corn etc from diet. I was wondering if this was it but doesn’t seem so.

Have you seen bruising?I get easily bruised it’s become a big problem. I have all the symptoms you talked about. I am working with a doctor, thanks

Is edema another symptom?

I had all these symptoms yesterday what lab to you draw to confirm this.

I think there's one guy at Mayo clinic that may run a bone marrow test, but you have to be having a current flare up for it to test positive... where is everyone else getting diagnosed? I'm currently being my own guinea pig and throwing high doses of quercetin, NAC, bromelain, rutin, resveratrol, vitamin C, HistDAO, and a supplement called Antronex at this problem and it seems to be working so far. Sam-e helps considerably with the brain fog. NAC, acetyl-l-carnitine, and an adrenal complex are helping with the fatigue. Gallbladder enzymes and the quercetin are helping with the incessant, watery stools. Haven't found anything that works for the rashes, though. I use beta methasone cream right before I see my dermatologist so she stops trying to prescribe more harmful medications (like oral steroids, which make me both sui and homicidal). It sucks, praying for everyone here watching this and going through it.

Never rely on a regular doctor to diagnose mast cell. They don't have the correct knowledge in place to do that. I want undiagnosed my entire life. I'm one of those that can't drink water without reacting and Mayo Clinic suggested it's in my head. ONLY go to a Dr. Lawrence Afrin-recommended doctor for diagnosis.. mast cell is NOT all about Tryptase.

no thank you for whooshy noise

Thank you so much this was very helpful

Maybe it could be that you live too close to lots of wind turbines, or that you’re watching your phone too much. .

I was told by 2 internal doctors to go home because I am healthy , my blood tests are good- go home and come back in 6 moths- but I feel so bad, I said , Oh, it’s in your head, I was told ..

Please tell how Stop gastrointestinal tract symptom i take famotidine but not help

This is one of the benefits of the internet.

This is so helpful. I had chronic “utis” that strangely had no bacteria on testing. Thankfully I had a thorough urologist who discovered it was actually a problem with mast cell activation. The relief to finally have a cause for the pain was incredible.

I have had all these symptoms and more for 25 years. Back then, nobody talked about MCA. Instead you just got diagnosed with ME, and were then ignored by the medical profession. Oh, and most people with ME also have Pots, but that wasn't called that back then either. There are millions of women with ME. We have been ignored for 50 years.

I have most of these symptoms. I have fibromyalgia so could just be that.

Anything to do with the new upgrade of technology 5g ???

Thank you Doctor! You described my symptoms very well, especially the generalized over-sensitivity. I appreciate you for posting this. Thank you!

All doctors know about mast cell activation but they do not have drugs to deal with it.

Wow… I have all the symptoms plus I am diagnosed with scare, derma, pulmonary hypertension, restrictive, cardiomyopathy, interstitial disease… But I have always had extreme allergies, rashes, hives, and the brain fog, the chronic fatigue and even neurological symptoms that come along with some of these "allergies" I even had immune thrombocytopenia both times i gave birth, and in times of medical trauma it happens too... hmmmm. Do you think my rheumatologist should explore this?

When I was 60, my then physician was set to do a bone marrow biopsy because of a 2 day urine collection test that indicated I might have systemic mastocytosis. She ran the urine test again and the levels were more normal so she cancelled the biopsy. She retired and I have a new doctor. Now, 15 years later, I always wonder if I do have it. I sure have most of the symptoms.

how is MCAS related to Histamine Intolerance? thanks for the intro - interested in testing and treatment.

Can't find a doctor willing to look at the sMptoms as a whole. They all just want to look at one at the time 😢😢

Mold toxicity!

I was diagnosed with fibromyalgia anyway when I go see my doctor no matter what I have they blame everything on my fibromyalgia an right now I'm having so many health problems I can't beleive it but I do beleive what you're saying I just wish I didn't have so much pain

I asked a well known allergist about Mast Cell Syndrome and he blew me off. What kind of Dr should I be seeing??

the simplest thing a person can do is eat healthy. zero fast foods. OMD. Intermittent fasting. one can of sardines a day. no gmo foods. get out in the sunshine everyday and expose as much of your skin to the sun as possible w/o burning red. I wear layered clothe and sit in the 35 degree sunshine with zero wind. as the sun starts to cook me, I remover layer by layer, until I'm down to my gym shorts. no sunscreen. natural vitamin d is the superfood our bodies need. and start going barefoot. the natural connectivity with the earth is also a good thing. It has made my knees and back stronger while reducing inflammation.

Helpful!

My family has this, and it became active after getting the vaccines. Two family members had it and not taken the vaccines. Is this something that can be genetic? I have a lot of sensitivities, but I’m not as bad as my other family who are diagnosed with it. We all have MTHFR, not sure if that matters, but interesting nonetheless.

So what do you do? How is it healed?

A lot of the coNvid j@bb damaged have this

Also bladder discomfort - feels like UTI - similar to interstitial cystitis.

My mom had this. I did not know of it at the time. I feel I failed her. She died of a reverse fall down 12 steps. Pretty much instant death. Thanks for the video. She was digging at her skin it was so itchy. God damnit. This sucks.