@Honeysuckle Blossom some of my reactions will make me not be able to sleep. Then, after more symptoms, then I realize it is a reaction. Note that this only happens occasionally, and i have had so many reactions, that I am not sure which food did it.
I know--same exact thing with me! I’m basically writing off the medical care establishment based on how I was treated and lack of care shown to me. There were (on 1 hand) I could count, several concerned urgent care doctors who picked up on all the red flags on my labs and at least asked me some questions for clarification. The rest told me to stop wasting their time and worse. Meanwhile I am steadily worsening and having falls at home, seizures in my sleep, and other symptoms. I feel for you and all others experiencing this.
I cried! 🥺 it's true! Parents look at you like “I don’t have time for this” or like your attempting some pathetic attempt at attention....nobody want to sit there and listen to a laundry list of symptoms....they just don’t! I can’t tell you how long it took me to bring up ANY REAL concerns I had about my health because the few times I had the courage, or remembered, they made a rude comment, performed a simple blood test, and sent me on my way. Out of 98% of the issues I’ve brought up over 10+ years, I’ve had MAYBE 1-2 tests that weren’t a simple blood test, and everything always comes back negative. Or they don’t tell you! One doctor didn’t tell me I had elevated liver enzymes (good & bad) until over a year later! Then when it came back high again, she said “better lay off those fatty steaks” wow! Really?! If she cared to ever ask me any question or listen to me she would know I don’t eat meat (outside of 1-2 pieces of chicken breast, no fat) per month! She just hid results, assumed I ate fatty steaks and never asked any questions all while judging me if I asked about my own health or brought anything up! I was so frustrated with doctors, I quit wasting my time and money...until now. Finally, I have a wonderful doctor, which is what brings me here today, but even still....seems like there is so much that’s unknown, I honestly just feel bad for being that big of a burden.....I have never shared my entire list of symptoms with anyone, becasue it’s a little frightening to say out loud & who would actually care to help...it hits home more than I even realized...you almost forget how much you hide until someone says it outloud - THANK YOU for sharing your knowledge and making this very frustrating, confusing illness easier to understand, you have no idea how much it means to so many!
I'm about to cry right now because of validation. I had a doctor ridicule me when I kept bringing up burning mouth syndrome! She told me there was no such thing!
Brilliant! This should be required viewing for every specialist at minimum, and preferably every practitioner. Intellectual laziness is dangerous for some of us! I am nearly a carbon copy to the first case he presents.
Took me 10yrs of studying this to see how much mast cell has played into symptoms ive had my entire life. I also have EDS and Dysautonomia....plus gastroparesis and pancreatitis (both from mast cells). The testing though was sooo extensive and invasive I just decided to manage it on my own. All my uti's turned out to be interstitial cystitis..from inflammation...
@@Jeferson_k I have interstitial cystitis still, but have significantly improved it with a few things: 1- taking "Prelief" before my meals (it is over the counter and on Amazon/some stores and reduces acid in the bladder, it is different than other acid reducers), 2- having Thermiva vaginal radiofrequency treatments, they encourage stem cells down there and thicken up the tissues so they become less irritable, I have to do this twice a year, once a year was not enough. 3- I am sure to avoid eating bad trigger foods, like orange juice and having more than about 50% daily value of vitamin C in a vitamin, or too many B vitamins in one dose, 4- Acupuncture, 5- Having stem cells from amniotic fluid or PRP (platelet reduced plasma) injected into the front wall of the vagina/bladder area, done once a year, 6- When I do pee I take my time and pee an extra round or two after the first bit to really fully empty the bladder better.
There are four things I like about this doctor 1) he is specialising in what I almost certainly have and helps me to understand my health issues 2) he is modest and unassuming 3) he is easy to understand without ever being condescending 4) he looks unhealthy himself, which perhaps perversely, I find singularly reassuring. I think he's a great guy
I think I have this to a lesser degree. When I was 18, I was bitten by a tick and contracted Lyme disease. I spent the next couple of years, pretty sick. It started with GI issues. Chronic constipation that was set off by a myriad of food intolerances. Severe gluten sensitivity. Soy intolerance. If I ate at a Chinese restaurant, I was sick for days after I'd eat. I eliminated gluten and changed my diet. I lost weight and started feeling better after I "recovered" (or so I thought) I'm in my mid 30's now and I'm experiencing a lot of very weird symptoms relating to MCAS. I'll have different symptoms that usually take 3-4 weeks to resolve. A couple of years ago, I started drinking a lot of Kombucha tea and eating Kimchi (both fermented and high in histamines). I was putting my body in shock. I developed globus pharyngis. It's the sensation of having a lump in your throat (though nothing's there). That finally went away, but I would notice random different parts of my body being affected by different things. There'd be times where I'd have severe insomnia which nothing I took, helped that in any way. Then I'd have periods of having really irregular heartbeat/palpitations. Then that would go away and I'd have abdominal bloating or diarrhea. Once that resolved, I might have bladder issues or skin rashes. These ailments were never at the same time. They'd move around, appear and then leave as quickly as they came. I still have severe seasonal allergies and allergies to dust mites. I'm currently dealing with random numbness and tingling in my extremities. Occasional muscle fasciculations (twitching). I've started to eliminate high histamine foods and take anti-inflammatory supplements such as Quercetin, Vitamin C, Curcumin, and Luteolin,
@@ducksnutsrissen2656 Wow. Yeah, this is more common than people realize. My best advice would be to make a food journal. Keep track of your diet and what you ate and how you might've reacted to certain foods. Avoid high histamine foods and get your gut biome at optimal levels. I've started doing ginger, blueberry, kale smoothies in the morning. Half unsweetened coconut water and half purified water,.. It's cleaned me out and detoxed me. I am seeing improvement.
@@Truerealism747 I guess that depends on what you mean by "pain". Abdominal cramps, muscular pain, stiff joints? I'd say all of the above at some point, but nothing was ever permanent. It would come and go.
Two anaphylaxis events were clues that I was dealing with MCAS. I immediately began a Ketogenic diet, started H1 and H2 antihistamines. I began a cocktail of supplements for treating mitochondria dysfunction, and 95% of my long haul COVID-19 symptoms cleared up within hours. Later testing by a hematologist were unremarkable. He said that I did not have MCAS. Today. I'm well, I'm strong,and although I experience the occasional long haul COVID-19 symptom I am fully functional.
A lot of recognition. Even the burning mouth. Life has been a living hell with no help. It s just trying to survive, it s not at all a life anymore. Nobody who takes me seriously. I wish I could try cromolyn, but I m in the Netherlands, no doc takes me seriously.
Hallo, ik ben ook nederlands, je kan nalcrom kopen zonder recept in duitsland…helaas heeft het mij niet geholpen…maar ja tis vaak een nachtmerrie, ik krijg vaak aanvallen wanneer er pollen in de lucht zijn
@@marleenvanwijngaarden2179 dankjewel voor de tip! Is de nalcrom als neusspray.of tabletten of drank? En is het speciaal tegen hooikoorts of ook tegen andere dingen?
This was one of THE best talks on MCAS I've seen thus far. Kudos to Dr. Afrin. I might send this to my naturopath. I went to an immunologist and because my tryptase numbers were good, he stopped there.
I cannot say enough about this marvelously brilliant and inspiring human being and doctor. My granddaughter in so many ways sounds like several of his patients and examples of MCAS . I wish he could speak to all of the medical schools to alert the Med students to these issues.
I just saw this lecture and was so happy to see an MD take this seriously. I suspect I have MCAS but trying to get testing done here in Canada is frustrating. Doctors want to write you off as being a head case/neurotic instead of listening to your health concerns. For me, I started by sensing I had chronic inflammation, to which my doctor just gave me a blank look and asked me about my stress level. Seriously? Medical professionals can do better than this.
He should be but, unfortunately, was treated very badly by U/Mn whereby leaving to move to New York. He was not taken seriously by these "intellectuals" but is still helping others with his bountiful expertise. Minnesota's loss, New York's gain.
Every Single day is difficult to live with Joy.......Every Year with New additional symptoms........Just visit Doc to hear: You have nothing..All your lab and scan reports are normal...But I am the One to feel all crazy symptoms.....☹️☹️.
My symptoms are feeling hypoglycemic and feeling sugar highs if I eat sugar/ carbs. I also have brain fog triggered by histamine food. I've been on the low histamine diet and I no longer feel as hypoglycemic. I'm 60 years old and I'm wondering why after all these decades no doctor ever suggested anything to me about eating low histamine. I read that histamines affect cytokines and cytokines affect blood sugar. I used to eat hard candy because I felt hypoglycemic but then I would have a reaction to the sugar and now I no longer need to eat candy.
It wasn't Polycythemia even with the elevated Red Cells. It was erythrocytosis. You need more than one cell elevation to be "POLY" cythemia. The term has been incorrectly tossed around for too long. Red Cells elevated is just erythrocytosis, since its just ONE cell.
I had the hives for 28 years. Started 3 months after I had my first child.. had some kind of heart issues since I was born. I just thought everybody was like that.. allergist put me on hismanol For chronic cold touch UTA cura.. I would have reactions to tomatoes and chocolate at times. What is on it for years every day. In 99 my heart took off and wouldn't stop. What is put on all kinds of heart meds didn't work made me worse. Already had low blood pressure. Finally told my doctor if you don't send me somewhere I'm going to die. Finally a cardiologist. He said the hismanol is what did it.. bladder infection on most killed me in 2011. Rounds and rounds of horrible antibiotics. Was going blind from the antibiotics I knew I was dying. Went to a Chinese acupuncture and medicine doctor. Got off all the antibiotics. He healed my bladder infection. And he healed my hives. 6 months later I went numb from the bottom of my foot up to my waist. That was 12 years ago this month. Now to fail back surgeries. Pain management doctor has killed me with diazepam. I always been hypersensitive to medication. This explains it all 🥺
I was diagnosed with mcas in Dec 2022. I take monthly injections for it. Life is mostly normal now. I just have to be aware of what allergens I expose myself to.
My son reacts to many foods with this type of rash. We have avoided many of them for over 2 years now including all legumes, eggs, dairy, wheat/gluten, rice, potatoes, oats. If he gets the rash due to exposure, a bit of topical betaderm 0.1% ung helps but I don’t want to apply it all the time. Avoiding the foods is key mostly but I do think he flares up to some extent more when sick with some viruses. In your experience: if you had a child like this, would constant exposure to these foods eventually lead to masticytosis cancers ???
I have been suffering from severe skin itching over the entire body. I suspect that recent weight loss and the release of cytokines from fat cells might be involved but I haven't verified this. I suspect that recent loss and the release of cytokines from fat cells might be involved. I live in San Angelo, Texas. Can you recommend a doctor who can help me with the problem?
What would be the steps I would need to take if I think I have MCAS I have a pulmonologist who has admitted that he thinks my asthma maybe mast cell associated I am currently on an h1 and H2 cromolyn monolucast and naproxen I am wondering if because I'm doing well on this combination it's worth getting an actual diagnosis because my diagnosis list is longer than my arm right now and I am as you pointed out skeptical to even try and get someone to understand me
Yes, get diagnosed! Go on facebook and find your local mast cell support group and get a drs list, ask the group if they know of an allergy/Immunologist that diagnosises and treats Mast Cell Disease. It's life changing to get a proper diagnosis and treatment, there is treatment out there that really helps. Ketotifen for mast cell leaking, Gastrocrom for skin and gut, Singulair for lung involvement, Aspirin for mast cell leaking. If you have to travel to get the best dr, do it! I go to Dr Solensky in Corvallis Oregon. Without proper treatment your reactions will continue to increase and you will develop more and more sensitives and health problems. It increases your risk of developing autoimmune diseases, especially neurological.
I have IC and it can feel like a knife is scraping the inside of my bladder/urethra if it gets to be as bad as it has been. You should talk to your doctor about it, but a minor stinging around your period could be normal. I'm just used to that as my norm, and it does get worse during my period. I would look for other symptoms and signs before jumping to an allergist.
@@victoriarobertson266 Not around my period like periods of time as it is random when it happens. I do have other symptoms as well this is just the first I've heard about the bladder thing and was interested. I did a non 24hr urine collection and my leukocytes were at 25 (which according to the form should be 0) so wondering if possibly connected or just random.
@@foreverkenzie2397 gotcha! Yeah, worth looking into. Did they treat with antibiotics for a UTI and if they did, was there any improvement? Leukocytes can also be a marker of inflammation and not infection.
@@victoriarobertson266 nope nothing they just left it didn't even mention it to me. We have a way to see our results online though so thats how I know. The burning will go away on its own usually then just randomly come back.
@@foreverkenzie2397 do you have allergies? It wouldn't hurt to pop an antihistamine next time it happens and see what happens. But I would highly recommend getting set up with a urologist, because they'll be able to speak to this way better than a gp, and actually follow up. There are many supplements out there that can help as well. I've seen D-mannose to supplement, there's pyridium if you need pain relief specifically for your bladder. Don't go for the cranberry/uro health stuff, it can be aggitating.
To find a local dr to get diagnosed go to facebook and join a mast cell support group and ask for a dr suggestion or dr list. People will help you. Get diagnosed! West Coast -Pacific Northwest Mast Cell Disorder Support Group.
The immunogist I saw was incredible - he can diagnose without even looking at you. Before I had even taken a seat, he said to me ' You don't have MCAS. There is no link to EDS. There is no science behind it." Told me symptoms were caused by meds. "But the existed before I was on those meds." Silence from him. He told me if my bloids shoeed tryptase, it was MCAS, if it didn't, it's not. He is known in EDS circles locally for being an awful doctor.
Not actually true , my doctor said that just because you have normal blood work or abnormal blood work doesn't mean you don't have mast cell activation syndrome there are tests that can show you have it but sometimes you could have completely normal tests and still have mast cell cuz it's not just directly in one area of your body it it's a very complex disorder. My Dr is a specialist in mcas and also knows what Ehlers-Danlos syndrome is along with dysautonomia and P.OT.S
He's useless...doctors should always forensically listen to the patient, not treat them as a nuisance. They get paid enough. They could at least cut out the areogance
You can. I have Lyme and it is what’s driving my MCAS. At one point when my Lyme went into remission for about a 6 month period, my MCAS totally chilled out. My Lyme has flared again and my MCAS is rising.
Ik heb mest cel activatie syndroom, samen met myelodysplastisch syndroom . In Nederland weten ze weinig van mcas. Anti histamine is het enige wat ze kunnen geven, ik ben inmiddels zo ziek dat ik niet meer kan werken. Teveel mestcellen in mijn beenmerg. Kit mutatie niet aanwezig.
I was diagnosed a few years ago by a dr that I have polycythemia vera. I keep bringing up to Dr's including a hemotologist oncologist..I keep getting told that I don't have it..but my labs go along with the diagnosis along with other symptoms.. I have other health problems also.. Anyone with ideas??
Look at above comments.. someone went on ketogenic diet & took supplements. I don't know the root of my problems but I'm feeling quite unwell..too long & too often. I know lack of sleep doesn't help so I'm getting that sorted & am going to look at fasting..for a good length of time. Some guy healed of colon cancer by doing this..I've heard lots about it. Gives the organs a break & they eventually detoxify. I know that 1st couple of days a pure fruit juice is recommended..Id say apple would be one of the finest to use.
it can be very difficult to find a specialist who is knowledgeable; for that reason people with enough issues (like if you've been hospitalized for anaphylaxis and are suspected of MCAS) will often travel to New York to see Dr. Afrin. You can also ask in MCAS groups on Facebook for doctor recommendations, but since this disorder is still so poorly-understood, you might get used to the idea that you might need to travel. Good luck
N-methyl histamine 24hours urine tests, tryptase (often normal in MCAS) and 5-HIAA test in urine.And take Anti-H1 and anti-H2 and see if getting better
I believe it does. My 36 year old son went from mold toxicity from his father’s house, to also being diagnosed with 2 kinds of Bartonella and Babesia. Before he could get his meds, he got Covid in January. It’s now May, and he’s in so much pain mentally and physically. Every organ hurts, skin, neurological and psychological problems, limb numbness, cold/hot, fevers, sweats, extreme anxiety snd depression, and horrific head pressure with ear popping. He’s delusional and paranoid and has been through psychosis. He goes from loving to absolute rage! He’s going to take his life soon if we can’t find him enough help! He wants to go to an inpatient, but there is none that I know of! I just found this mast cell info recently and the Ehlers-Danlos. He’s very flexible, and he has a forward head posture, which won’t allow him to relax. I’ve tried to take him to an upper cervical chiropractor, but he’s so sick, he sometimes can’t go. I can’t get to my appointments because I have to babysit. I’d take him anywhere they could keep him! He won’t listen to me and does whatever he wants anyway. He’s on Nystatin, Plaquinil, Ivermectin, clonopin (not enough), Mirapex, an antihistamine, and gabapentin. He’s not a good patient, but I feel sorry for him because his doctor (a specialist) said he may have had one of these at age 7, when he had meningitis. I’m ready to run away, and I’m in pain because I’m still recovering from breast implant illness and mold toxicity. This is not how I pictured retirement!
@@Tinyteacher1111 Who put him on all these meds? It sounds like he needs a full evaluation by I regular doctor or a real specialist , not a chiropractor, was he psychotic before he got all these meds? Psych meds would help if he was actually psychotic or manic... How is Babesia and Bartonella treated? Treatment with Mepron and Zithromax has been effective for Babesia. Quinine and clindamycin have also been effective but are associated with a higher rate of side effects. Flagyl and Tindamax drugs have been proposed but not well studied. What are the side effects of taking pramipexole/ Mirapex? Dizziness, lightheadedness, or fainting, especially when standing up suddenly from a sitting/lying position. drowsiness. seeing, hearing, or feeling things that are not there. twitching, twisting, or other unusual body movements. unusual tiredness or weakness. Mirapex is usually prescribed for parkinsons...... Is he suffering from Long covid ? Or were these symptoms present before he contracted covid......
MCAS often occurs with small fiber neuropathy (SFN). Multiple studies show that up to 70% of people with fibro actually have and test positive for SFN. I was diagnosed with a skin punch biopsy at my neuromuscular specialist's office. Then found out the fibro was SFN which caused the MCAS. I knew something new was happening when I started reacting and flaring with practically everything.
@@roseo322I think that you found an interesting link, but your statement about causality is premature. The cause could more likely go the opposite way, or they could both be caused by a third unknown factor.
My MCAS symptoms started several months after the confirmed SFN so the SFN came first for me. As far as fibromyalgia, check out the newest leaders in neurological research including Dr. Oaklander, who believe that fibro is actually SFN according to newer studies.
To really get to the root cause, holistic therapies are needed. Drugs just make it worse. It’s great that this doctor is helping to diagnose people, but drugs are not the long-term answer. They’ll just cause more problems. 😞
Anaphylaxis! Over and over and over. Then docs don't even try to find out why. Sorry, I'm miserable right now and I'm sick and tired of this. It has made life unbearable.
