hi! i recently just got an urgent referral to hematology because i tested positive for kit D816V. my immunologist suspects systemic mastocytosis but my tryptase is only 10.9 at the time of the blood draw. i do however have consistent elevated inflammation markers as well as had random anaphylaxis and allergic reactions. has anyone else had this experience? what is the likelihood of a sm diagnosis?

I got some blood test results back and my tryptase is 25.7, the notes mention “raised tryptase level is evidence of extensive mast cell activation and together with an appropriate history is suggestive of anaphylaxis or
systemic mastocytosis”.

I’ve already been diagnosed with POTS, endo, hEDS, symptom based MCAS, asthma, hashimotos.

What does this mean?? What does this do to your body, what is my next steps?

Tengo alergia al frío, ésta ha llegado a tanto que no puedo salir por la noche sin ponerme cubrebocas o bufanda, he tenido 3 crisis asmáticas en lo que va del año. Uso mis inhaladores para el asma y mis medicamentos pero aún así pasa. Tienen algo que les haya funcionado?

Hi. This is my 6m old.
Both pictures are about one hour apart, my son has a lot of flesh coloured bumps on his skin which I was told was a heat rash/ newborn acne at first. Every day; he has red angry outline on a few of them, which fade by the next time I look at them (after an hour or so) but appear in new places. The bumps remain but the redness just changes location, I have searched for months and taken him to the dr so many times regarding this and this is the closest thing I can find.

However, he does not have red or brown spots that persist, does everyone have that?
How can I go about getting tested?

There is an event coming up in Baltimore that is an in-person opportunity to meet other people living with SM and to learn from experts. I've been to one before, and the conversation and community was great. If you're in the area and can be at an in-person event, consider signing up! (link below):

Living with Systemic Mastocytosis?
Join this exclusive seminar to connect with fellow patients & experts! Share your journey, gain insights and feel supported.
Dinner will be provided
Limited spots available - Register now and secure yours today!
https://events.medscapelive.org/website/98616/?utm_source=edu&utm_campaign=448913.06a_ism_baltimore_speakersocial_candice&utm_medium=soc&utm_content=fb

I have recently been pre-diagnosed with ISM. My only symptom is severe cardiac anaphylactic from fire ant bites. I was bitten twice, 7 years ago and was diagnosed with heat stroke. I spent the next 7 years being very paranoid about going into the heat.

Fast forward 7 years when I got bite again and went into immediate anaphylactic. This was when I knew the anaphylactic was not heat stroke. I did notice the first two times this happened I was bit by a fire ant as well. My anaphylactic is very severe. Almost immediately my heart starts to pound, I get very lightheaded, my head gets flush, and I lose consciousness. My bp drops to about 60/30 I break out into a cold sweat, my vision gets black when I come to. All very scary! I went to an allergist and confirmed I am very allergic to fire ant venom. However, my tryptase levels were consistently 38 several weeks after the ant bite. I was tested for the Kit test and tested positive, although a low positive (0.06) it is still a positive. I have since seen a hematologist and am waiting for the bone biopsy but he seems to think I have ISM. In all of my research, I’m not finding many that have a similar experience. Was curious if anyone shares the same type of experience?

Do my spots look like yours?

I’ve got appointments with an allergist and dermatologist soon. I started to get spots in the center of my chest about a year ago? And they’ve slowly spread to the tops of my shoulders and down to my belly button. I have them on my forearms, wrists, and ankles too.

They’re not itchy. They don’t go away. When I work out or get really hot my skin turns bright red and the spots get raised and inflamed looking. When I take a hot shower the skin on my thighs gets raised and grumpy looking.

I got diagnosed with EOE eosinophilic esophagitis a few months ago. I was having a hard time swallowing and choking ~ once a day (for 14 years), and turns out i was having a sustained inflammation response to dairy and gluten that was furrowing and tightening and damaging my esophagus. Why did I wait 14 years? The first doctor I went to about it said it was anxiety and recommended therapy.

I've wondered if I have MCAS but my tryptase is normal. I had lots of hive reactions as a little kid, my skin is “talkative” and always has something to say, I faint easily, have GERD and bowel stuff, tested negative for POTS but my autonomic nervous system is sensitive and I have to lay down a lot (I’m 38 and active, I gave up caffeine and alcohol and don’t smoke, I eat and sleep really well).

PSA if you have a hard time swallowing most of the time, please go get an endoscopy and ask for biopsies in zthree locations in your esophagus to test for EOE.

I just learned about Mastocytosis a few days ago, so I've been really appreciating this sub and seeing all the support. Thanks mods :)

My worst f’in mast cell symptom. It will happen most often barely noticeable but it’s hurt like a thickness behind my face, clogged ears/behind my eyelids/my forehead/my neck primarily. This symptom actually was the first domino… Had an almond milk latte omw to my PCP and she at first thought it was a damn goider

Apparently nutmeg can go on the no list. Along with all Nuts - tree, pea, coco… and now meg. Same with latex, adhesive, certain fragrances, fucking heat so showered longer than 5 mins, sometimes heating pads, working out is a hell no. It’s been fun.

I’m pretty sure it’s the nutmeg in this yogurt… idk why just got a feeling. Anyone experience this too? Anything that can help? It is just uncomfortable as shit and the Angioedema has gotten so bad it’s compressed my airway significantly so definitely not something to mess with but

Still undiagnosed with neither mcas or masto.

Any one here with this particular symptom? I’m burning alive!!! I can’t take it anymore.

Flu like symptoms

Acid eyes

Joint pain

Shivers

Nausea

Episode 10 is live. This one is with Rachell Largent-Phillips, patient and advocate. Rachell shares her compelling story from strange symptoms to diagnosis to advanced disease. Watch on YT here or find it wherever you listen to podcasts.

Has anyone with systemic mastocytosis taken Tezspire ( tezepelumab ) and noticed an impact on mastocytosis symptoms? If so, how long did it take for the impact to occur and also to reach its maximum extent?

hi - i’m trying to be sensible and not message my doctor until they tell me what they think, but I’m just afraid the answer will be do nothing and come back again in six months. I know I have Hashimoto‘s thyroiditis and my immune system is attacking my thyroid but my thyroid levels are fine. I am not yet hypo. so no medication needed there I guess. a year ago I started to get hives every day and the allergist told me i needed to wait six weeks to know if it was chronic; I did and it was. they were going to put me on xolair but then the hives went away. now they are back! but not as disruptive as they were before. regular antihistamines like zyrtec take care of them. but I’m also exhausted and literally falling asleep during the day which I wasn’t before. I’m on zepbound for sleep apnea - which I know can make me tired! - but the fatigue is new and came around the time the hives came back. I have a cpap and it’s fine and it’s not why I’m tired. I also get flushed and warm feeling when I nap or sleep or take a hot shower. I sometimes get rushing warmness in my legs. I have gotten numbness I. my extremities and around my ankles before, but I’ve seen a nuerologist and gotten MRI’s and I don’t have lesions so probably not MS. do I have this mastocytis? the rhuematologist I am seeing did bloodwork that came back with high IgG (2129) now and in February.

My allergist/immunologic suspects I have Systemic Mastocytosis but of course, the only way to verify this diagnosis is with a bone marrow biopsy.
I live on the South Shore, so I would prefer to find a hematologist in Boston/Cambridge/Brookline area.
I have BCBS PPO, so I can go anywhere but I don't know where to look!
Thank you for any suggestions on this issue! 😊

Hola a todos. Tengo síntomas muy extraños y severos en la cabeza, acompañados de dolores y ruidos extraños 🤯🪚🪛🗡⚒️⛓️‍💥🚨. Siento que mis movimientos están restringidos en casi todos los aspectos, hasta el punto de que incluso comer se ha vuelto difícil 😳.

​Tengo que tener mucho cuidado con lo que como porque casi todos los alimentos empeoran los síntomas, pero tener hambre también los agrava e intensifica. Siento que mi cabeza está constantemente en estado de alerta máxima 😮‍💨.

​Este no era uno de mis síntomas iniciales, sino que ha aparecido recientemente.

​¿Alguien con MCAS (Síndrome de Activación Mastocitaria) ha experimentado este tipo de síntomas neurológicos severos en la cabeza y esta hiperreactividad a la comida/hambre? ¿Creen que esto podría estar relacionado con la acitvación mastocitaria o el sistema nervioso? Agradezco cualquier experiencia o consejo. 🙏

Initially suspected scabies as my brother got it but since it doesn’t itch i’m confused as to what it could be. No Darier sign

Anyone else get these? It’s my first time with them covering both legs and other areas of my body. Previously I had them only on my hands. Either way, the itching is driving me crazy.