r/mastocytosis

Hi,

Was wondering if KIT inhibitors had helped anyone’s neuropathy symptoms.

I’m pretty certain mine are driven by mast cells

I’ve been diagnosed with MCAS for 5years after getting ill 12years ago. I got diagnosed with MCAS from a positive 24hr urine test, symptom score, and I think high tryptase, but I can’t remember the result as I was so ill at the time that everything back then is foggy.
I have had improvement being on lots of antihistamines and especially Xolair although my daily life is still effected. Mostly now by cough triggered by eating, neurological symptoms, and an ill feeling in my body mostly after eating. Rashes are reduced to only being triggered by the heat. Without medication I have chronic diarrhoea, weird rashes especially on my neck, lip/throat swelling, heavy periods, and have had an unexplained anaphylaxis
Reading up on mast cell diseases the symptoms of systemic mastocytosis and MCAS are identical

My dr has never even mentioned mastocytosis to me, how do I know it’s not that? Is the only way to tell a bone marrow biopsy or is there other tell tale signs and differences?

I got my diagnosis for systemic mastocytosis not too long ago. A bone marrow biopsy confirmed, and I’ve met with a hematology oncologist for further advice. I feel like I need to remind myself to be grateful for the healthcare I have received. So to those professionals, I am thankful.

But damn, this is debilitating. It’s like I went over 30 years of living “normally”, and then had my whole life derailed. Foods I ate before are now the enemy. Finding triggers has been trial by fire. Multiple week long hospital stays. I’m on daily prescriptions, have emergency epipens and now carry this stuff around permanently, all of which didn’t exist 6 months ago.

I don’t eat well (obviously), sleep well or have the clarity of mind for so much of what I used to do. This fog that surrounds all my thoughts, it’s like a plague to my joy.

I know I’m not alone, and I’m trying to be grateful for what I do have. But I regret not appreciating my life more before this. These brown spots on my body, that I’ve had for years, now have a name. But I wish they were just weird freckles again.

Anxiety consumes so much of my life. My body remembers the cold of my everything as I almost die in the ambulance.

But a person just keeps moving, I guess. What is there to do but live?

Thanks for reading my feelings.

Had to call 911 today (second time ever) for suspected anaphylaxis where I overheated started having a hard time swallowing and then gagging.

It turned out to just be an adrenaline dump that was nasty and I declined transport but I usually gag and puke in anaphylaxis so I called to be safe because I was alone and wanted to call before I hit the point of no return.

Anyways I live on the county border and it routed me to the wrong county. Apparently it has something to do with cell towers. This time I was able to wait for the transfer to my local dispatch but honestly last time it happened I was puking too much to talk and my husband had to handle 911.

So anyways I’m trying to do things proactively. Landlines are expensive. I can’t always talk reliably during an episode. Has anyone got a life alert?

Hi all,

I’m not sure if this is MCAS (I have posted on that sub as well) or mastocytosis or something else, but I’m really looking for answers.

Last fall, around Thanksgiving, I got a sinus infection that was just awful. One of the really freaky symptoms was blurred vision in my right eye. I’ve seen an ENT for over 6 months now, had two surgeries, and been on 8 or 9 rounds of antibiotics. I’ve lost count.

While I am definitely breathing better and the infection seems to be out of my sinuses (going to confirm with an upcoming MRI) my vision is still wonky in my eye. I also have extremely itchy skin on my face and a handful of other symptoms that \*could\* line up but could also be peri or any number of other things.

Has anyone else dealt with something like this? I really appreciate you reading and for your time ❤️

Hi. I am 98% of the way to a indolent systemic mastocytosis diagnosis. Apparently I also have psoriasis. I am very dubious about the psoriasis diagnosis because it appeared shortly after I started having the ism flares and the plaques go darker red and itch more when the flares happen. The psoriasis was diagnosed by a dermatologist who knew I was being investigated for ism, but he didn't do a skin biopsy. Does anyone else here have both conditions or mastocytosis lesions that look like psoriasis?