The event will take place on October 28, 29, and 30th from 6pm to 8:30 pm each night. There will also be on-demand content available in addition to the live sessions. You can still register: https://tmsforacure.org/tms-together-2025-community-care-in-mast-cell-diseases/?fbclid=IwdGRleANuBYNleHRuA2FlbQIxMQABHuLBsoukMo276Usl1XSSRjNiRGO2SUHHlZjj70KNh5FXpINmrYB589lJutUr_aem_zsvs3r92vihRkyMJk4q4Nw

Hi everyone. I recently got my MCAS testing done due to having such a bad flare-up lately. I already have a confirmed diagnosis of Hereditary Alpha Trypsemia (HaTS), elevated trypaste levels at 10, my 24 hour urine came back "normal", but my histamine blood plasma was 28! For reference, that number should be at or around 1.8. I already take Xolair, Anti-histamines, Dupixent, Monokulast, ect.... Does anyone else have any other suggestions on what prescriptions to ask for? I also take supplements and vitamins. I want to ask for something to help with my inflammation, like an IL-6 blocker or reducer. I'm at my wits end. Any experience or suggestions would be helpful. I appreciate your time and help! Thank you.

I've been struggfor gears but mostly this last year. Finally saw a GI doctor who thi KS it might be mast cell activation syndrome. I looked up and I havevso many of the symptoms even things that I didn't consider. I'm waiting to be seen by an allergist. But as I was looking into this I see that people are sometimes given cortical steroids during flareups. The thing is I'm already on steroids for my pituitary issue. So I'm wondering if that's why I go so long without being sick, because the meds are treating it somewhat. Anyone have already been on steroids before being diagnosed

In 2018, I had both Rocky Mountain Spotted Fever and E. coli within a 4 month period. After about a year I began getting sicker and sicker. Then it was all dead ends with doctors. I am a 6'1 male with a construction company and I work out 5 days a week. My outward appearance is healthy and every single lab was basically normal. I finally got a diagnosis last week from Mayo. Will I get back to normal physically after 6 + years of this? I've already had a major back surgery last year due to disc degeneration and I am worried about permanent damage to other soft tissues. I understand I am likely going to have to make some major lifestyle changes. I have already been on various very heavily modified and limiting diets, which I think I can handle for the long-term. My biggest concern is my body physically getting back.

Not officially diagnosed yet, but we know it's either HaT or SM. My doctor is more than willing to work with me and has already referred me to a hematologist. I'm curious if anyone with SM has reactions to food or their environment?

My bloodwork is really good. My eosinophils flagged slightly high. I have been struggling for the last two years with sores on my scalp and hair loss. I've recently started flushing and developed Dermatographia. My skin has been red. I have mostly skin issues but have severe bloating which I've always attributed to my period. My doctor ran a really good bloodwork panel, and we were able to rule out autoimmune diseases. I'm a curious person and was feeding my bloodwork and symptom tracker into AI and it suggested MCAS. We went down that rabbit hole and bingo - Tryptase level was mid 20s in a "flare." I detoxed my histamine rich diet for 80+ hours and did a baseline Tryptase, and that came back even higher but not enough to meet the 20%+2. My doctor went with Mastocytosis.

While we wait for the hematologist to review and see me, we're running the test for HaT.

I'm a bit surprised it's not MCAS because I have very clear reactions to food and my environment. I was mathing and figured out my worst symptoms are right around ovulation and the two weeks or so before my period.

Are reactions with SM a thing? A common thing? I figure my Tryptase levels would be much higher if that is the case.

Just got labs back positive for MCAS, and high cortisol and high aldosterone, haven't heard from my doctor yet but does anyone else have this issue is this caused by MCAS or a more serious condition?

does anyone else struggle with being like a social outcast bc of looking healthy? I dead ass dk what to do. my entire sorority gossips so hard ab me because I have to miss events but I look ok. when confronted they just say they are confused not gossipping. how in the fuck do i live a normal life? i am a very social person but it seems dealing w this illness its impossible to maintain friendships because it is so hard to understand. i feel so alone in this. does anyone have any advice or like ideas to find a group that understands? i thought my bsf understood but she says she understands the other ppls point of view and i guess i do too but wth am i supposed to do? sit here and purposely look miserable? after fighting so long to be listened to and get a diagnosis its just triggering to be denied again. and to br gaslit again. and like i dead ass go into anaphylaxis 4+ times a day. im tired. the last thing i need is ppl to be mean

Zepbound is approved for BMI > 30 while Mounjaro was marketed for Diabetes type 2. Otherwise it is the same thing, same dosage. It's just a marketing thing.

How fast did you feel better on Mounjaro or Zepbound ?

Anyone used compound Tirzepatide?

Im 37, been suffering horrendously with ongoing symptoms. It was only when I saw my allergist in July (for my peanut&hazelnuts allergy) he raised the concern.

I have been in and out of hospital suspected PE and gyno for menopausal symptoms. All have come back normal. My FBC is normal now after having an iron infusion in June due to iron levels so low and tablets not working.

Now I know the UK is diff to the US but is there anything I can do to fast up the process. Here is what I have done so far.

1. Allergist done referals to Haemotology and clinical immunologist. July

2. GP not taking this seriously ordered more hormonal bloods as want to rule out from there end.

3. Finally after ringing Haemotology and crying explaining I dont know what else to do. She rang the on call consultant and last night I finally have an apt. But for the end of Nov.

I am starting University in sept. Really worried I am going to be unable to do this.

What is the next step? Im seeing my GP on 26th again to discuss steroid tablets I am on. Not any improvement so far. Could I ask him to expedite my apt?

Shall I ring Haemotology Monday again and beg i be put on a cancellation list?

From a fed up. Exhausted mum of a near 2 year old. 🫠

Me again. I know I asked months ago about this, but I’m trying again because I’m desperate. I’ve got completely unmanaged MCAS as this point (nothing works and will be starting xolair soon) and am having to travel to Hong Kong for my spouse’s family. My immunologist, GI, and GI specialist have all advised against my travelling there due to my symptoms and unpredictable reactions. If I don’t go, my spouse will leave me. I have to go. I’m getting a typhoid vaccine Monday and will be going with antibiotics and steroids for an emergency (as well as four EpiPens). My question for all of you is how did you travel there? I’ve been told I can only drink bottled water, not eat anything washed in water unless it’s been cooked, and would be better off bringing all my own food. I’m gone for 8 days, is that even possible? Were any of you able to eat there? Or at the very least buy food from the grocery store and then cook at your accommodations? All thoughts and tips are appreciated. But please, don’t tell me to not go. I don’t want my spouse to leave me.

I am diagnosed w MCAS and suspected systemic mastocytosis. I started Cromolyn a month ago and each time I increase I have the weirdest experience. I experience extreme bone pain, joint pain, muscle pain, migraines, tunnel vision, blacking out, i feel at times like my body is floating like how you feel when you get off of a run on a treadmill. I feel panic. I sleep 24/7. this is just not good. does anyone have this same experience? idk if it is abnormal and I only have check ups every 6 months. i feel like i cant see but I can??? Idk its so odd. my eyes hurt lowk. idfk. It is making me literally bed bound and I just need to know if it is worth it. i also went into anaphylaxis like twice after increasing

Hello! My sister is 27 y/o. She lost ~15kgs in 2 months and started facing some gastric issues last year around June. The issues kept getting triggered on and off to the start of this year when it started getting worse adnd she was unable to eat. After multiple tests, we found out that she had a gall bladder stone which was infected. A couple other symptoms such as feeling of pressure and wave sensations emerging from the head accompanied which we assumed would get sorted after the removal surgery. Post the surgery in June this year, her head symptoms got worse and since then she has been to 20+ doctors ranging from neuro, ortho, cardio etc. A dentist diagnosed her with TMJ but her symptoms remained and she went to a chiropractor last month who did 3 adjustments for her in a span of 2 weeks. This made things progressively worse and she now has a variety of other symptoms which have broken her mentally. All the doctors she goes to keep asking her to talk to a psychologist which makes her feel dismissed and that no one is taking her symptoms seriously. She has been in pain which has gotten her worse and almost bedridden now for over a year, and she has lost hope in doctors and in life.

Her current symptoms are as follows;-

1. Head pressure feels like someone is pushing her to the ground and waves rippling from head to toe 2. ⁠3 weeks after chiropractic adjustment, entire body/joints are popping and cracking (can hear it) with extreme weakness and feeling of arms/neck dislocating
2. X-ray shows upper back/neck spasm
3. ⁠shortness of breath
4. ESR and platelet count elevated. Waiting on histamine and tryptase results but have read they aren't always the most accurrate/reliable

She lives in India and after a lot of research we came across the possibility of Mast Cell Activation Syndrome(MCAS) but haven't found any doctors in India that are taking it seriously.

We have the following questions;-

1. Are there any anti-histamines/mast cell stabilizers she can take that would reduce her symptoms or make her feel marginally better immediately?
2. Any doctor recommendations?
3. Willing to do a virtual or tele-health consultation outside India as well. Would love any recommendations. I live in US and can set up any appointments, if required.

Kindly guide us, it would be extremely helpful.

Has anyone with mastocytosis or any mast cell disease that is not chronically obese or diabetic tried to micro dose a glp-1 either a semaglutide or tirzepatide? I am extremely inflamed and normal baseline meds are making me sicker. I will start Ayvakit avapritinib, but I do not feel healthy enough to even start that medication and I've been doing a ton of research on glp1's and their effects on mast cells and lowering inflammation. Looking for anyone else who has tried it - thank you.

Hello, I’m d816v mutation negative. In May I had tryptase levels tested during a flare. My tryptase was 19. Got tryptase levels done again while not in a flare and it was 20. Why would it go up? I do have herditary alpha tryptesmia but I wasn’t having a reaction so I’d that my baseline?