this all started when i noticed my skin doing weird things a year and a half ago. i now know it's called skin writing (dermatographia). what's odd is i have 3 types of skin oddness occurring. if anything touches my skin, a line/shape goes racing all over. that's the usual thing people think of when you say dermatographia. i also have times where nothing is touching my skin and i either feel a tingling or like a scalding hot finger dragging down my skin. those marks don't fade for days. the third type is what really scares me. it feels like someone is carving shapes into my skin with a knife, outlining it over and over again. it creates raised shapes. they aren't from anything touching me, they happen spontaneously and are extremely painful. i have them all over and the shapes so far have been there months. they keep getting more pronounced.
last summer new things started happening. some are not scary, like one eye feels like someone scraped sandpaper over it while the other won't stop tearing, i have sniffles, mild headaches. the flushing was a bit more alarming, different parts of my skin going extremely hot and turning an angry red. the numb lips, swollen throat, raspy voice, brain fog and chest pain scare me as much as the deep carving skin marks.
it seemed like every week a different food caused me all sorts of agony, setting off the patten and i kept cutting out foods. i realised salicylates and sulphates were a no no, as well as additives and heat..which is horrid as it's summer 8 months a year where i live. when my fingers, toes, lips and cheeks started feeling like there was an arctic wind blowing on them, i consulted dr google. i tried an allergist, but it was a bust. he told me because im not in constant anaphylaxis i didn't need to worry...and that mcas isn't real anyway. so i went to my primary care doctor. she's a star. she ran the tests an allergist would order to test for mcas and hey, they kept coming back positive. i've since gone to 3 other doctors. one looked at my lung scan and pronounced me healthy from that (disregarding the mcas positive testing. she didn't even look at it!🙄), one asked me what it was, and the most recent said it wasn't his speciality. on his website, it says it is. he apologised and gave me a list of doctors to consult.
i'm eating around 2-300 calories a day, i'm exhausted, in pain (in hell rather) and on really bad days the world seems to tilt when i stand, my heart pounds, my face gets hot and if i can't get to a seat quickly, i'm going down anyway as my limbs go weak and just quit functioning.
i guess i'm just here to say hi and try to get some ideas of how to cope while i wait on a competent doctor to get me to the next steps. i am aware mcas and mastocytosis are not the same thing, but as they're related and there isn't an mcas support group, i thought i'd join here.
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Blanketttime1
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where do you live? I could ask Guys hospital london Masto experts who is expert in your country/ city.
Are you taking antihystamines? I take:
Fexofenadine 180 twice a day
Famotadine 20mg twice a day
Cetirizine 10mg
I Avoid all food additives. So no processed food. And no alcohol if it sets things off.
I go to a Tai Chi class to help relaxation. Meditation helps. I know it is difficult but avoiding stress is important. Adrenaline sets off your mast cells.
I have systemic mastocytosis and had this diagnosed by a genetic test showing a mutation on Mast Cells followed by a bone marrow biopsy.
i haven't started any remedies as i worried the hoped for doctor would run tests again..but i'm fed up and considering trying some. the only problem is a lot of them i've seen online have additives that set off everything for me. i do have a bottle of quercetin in my medicine chest.
interesting about stress being a problem. i had a massive row with my sister a few weeks back and even though i only ate my 'safe' foods and wasn't overheated, it all started up. thx! i watch a lot of comedies to laugh, which helps.
Rows with your sister are a bad idea. “Walk away “ is the advice the consultant gave me. Dont get into situation which cause stress. Very important advice!!!
There is no cure so the advice will be to tske the antihistamines (both types- 1and 2 ). You can buy these. I take 180x 2 of fexofenadine (more than standard dosage) and 2 famotidine daily Also something called sodium chromoglicate which you probably have to ask your doctor for.
Dont get hot. Difficult where you are i know. Dont get cold.
Avoid insect bites. Where long sleeves if you react to the sun.
There are lots of mastocytosis specialists in USA. I will send you a link to a US advice site later.
What happened in your environment when this started? This sounds EXACTLY like where you live got water damage, because this is a typical reaction of someone who has mold-susceptible genetics and is suddenly exposed to toxic, mold when they haven't been before. Your doctors will never think of this or test you for it because it's not part of their education.
Please go to survivingmold dot com and read that site, and test your living space for mold. The name of the test to do is the HERTSMI-2, it is not as expensive as having a "pro" come do it, and it is more accurate than having a "pro" come do it. Water damage is often invisible, from roof leaks, pipe leaks inside of walls, badly constructed drains, etc. -- and not all molds have an odor. I almost lost my life to this situation because over seven years no doctor had a clue. I had to find out from someone on the internet.
The web site mastcell360 dot com can be of great help for the MCAS but they make it very, very clear that mold exposure is a huge factor for most.
i worked in an old building years back that had mould. i had trouble breathing and eventually had to quit, so i know that's a problem for me. i've lived in 2 places, one is a new building. i will check out the website and the testing kit. thx!🤗
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Could MCAS a possibility?
Advice please,
Hello :-)
MRI with contrast dye
Nalcrom Supply Update