Been suffering over 4 years and no doctor in my area believes me, because my tryptase comes back normal. I have Dermatographism, gut issues, neurological issues, etc.

@howtomeetwomen-

Жыл бұрын

If you can find someone to prescribe a trial of antihistamines just to see if they help, it changed my life.

@dogeloaf642

Жыл бұрын

Hey! I went to a cardiologist for POTS symptoms. The doc picked up on possible MCAS and recommended antihistamine trials right away. Might be worth looking into docs that specialize in EDS and POTS since they can occur together. Best of luck!

@ninap6893

Жыл бұрын

You can have it and a normal tryptase.

@winxclubstellamusa

Жыл бұрын

Any good allergist knows that only a minority of MCAS patients have elevated tryptase in their tests because of how fast is degranulates at room temperature. And there are MANY more tests to do to diagnose MCAS! You need to find a new allergist who specializes in or has experience in this very rare and debilitating condition.

@EmuEmi

Жыл бұрын

@@ninap6893 then how do you get a diagnosis or for anyone to believe you

You're one of the few who can see it. Even laughing or crying even coughing can bring on an an attack for me!

Just fyi, Doctor, not all of us have dermatographism. I have the worst case my specialist has seen in the history of his practice (38+years), and it's rare for me to have that as a symptom. My specialist says this test is roughly 20% accurate at best and even less so in women, as the dermatographism can disappear totally during ovulation and the progesterone half of a woman's cycle. It also can only occur during an active mast cell flare in some people.

Thank you for this. I wish I had known about this years ago. Dematographism runs in my family. I had this my whole life and recently was diagnosed with MCAS.

Wow, I have suspected MCAS And I’ve had weird allergic symptoms my whole life with migraines and joint pain my worst symptoms. I just used the tip of a soap dispenser pump and lightly wrote a red V in my chest. Ty for sharing this

MCAS can come from hidden mold in your house or also from vaccines

Man, MCAS is sounding more and more like what I'm experiencing. Two specialists are already convinced I've got Ehlers Danlos and currently being assessed for POTs because I've always had these weird symptoms, dizziness, fast heartrate, near fainting. And weird allergy problems that sometimes don't show up as allergies with skin testing.

I have had so many of the symptoms for my entire life- shortness of breath, flushing, random skin rashes for no reason, GERD, IBS-C, eyes watering 24/7, raised welts on my skin if I scratch it at all. Thankfully Zyrtec, Singulair, prescribed acid reflux med (really an antihistamine), and MANY gastrointestinal meds have made my life livable.

@xLovebirdx

Ай бұрын

Have you tried a low histamine diet

My skin didn’t react and a functional md said that means I can’t have mcas. My tryptase is 12.7 and I have extreme flushing, rashes, gi issues, reactions to foods, I’ve lost 30 lbs. Don’t solely rely on rubbing the skin please.

@r..1240

Жыл бұрын

Same! Thank you so much for your comment I nearly cried

@gallakochar4245

6 ай бұрын

⛳️Exactly.. One symptom does not diagnose the whole syndrome.

@ashockablack1670

4 ай бұрын

Can this cause body odor?

I am a textbook Mast Cell Activation Disorder candidate with 90% of the symptoms and conditions associated with it. I've never been that person who's skin goes super red when you scratch it. Yet my husband, who does not have MCAS, is that person who you can write on their skin with your fingernail and it will stay red and inflamed for hours. So this video didn't really help. I'm frustrated that primary care docs aren't trained in MCAS yet the allergists in my area don't want to work with MCAS candidates to get an official diagnosis. I was given a tryptase test by an allergist who did not tell me that you are supposed to get the test when you are having a major flare up. I waited two months until I was well enough to go get a blood test... then the allergist gad the audacity to say "there's nothing I can do for you. Your bloodw9rk came back great.. your tryptase level was normal." by the time I saw him for this follow up I knew the tryptase protocol -- that you are supposed to perform it milyiple times and the oatiejt is supposed to try to get the blood test while in a major flare up. I asked him how he could possible be satisfied with sending me away after one test, that I took when I felt my absolute best in two months. he got really uncomfortable and said since I don't have allergies he can't help me. I asked him what kind of specialist I should ask ly doc to refer me to then if it is out of his scope to help mcas candidates... he got really uncomfortable and said "OK, I'll run another teyptase test." he also told me he can get audited if he runs too many tests since I don't have life threatening allergies. I'm getting close to reporting him. it's like he just wants me to go away so he doesn't have to deal with this diagnosis.

This is amazing, thank you. I can play tic-tac-toe on my skin, but I failed the tryptase test. Getting on loratadine, famotidine, montelukast, and hydroxyzine took my life from excruciating to manageable.

@maryamjoha

8 ай бұрын

My specialist says the tryptase test is less than 5% accurate. He said he's only had one or two patients in his 35years who actually had high tryptase. Our bodies have adapted to process the enzyme quickly and so it's basically a garbage test no experts in the field use.

@clemensh6214

7 ай бұрын

Hi, was your tryptase to high?

@maryamjoha

7 ай бұрын

@@clemensh6214 No. The test is performed incorrectly 99.9% of the time and for people who have had mcas for their whole lives, their body has become hyper-efficient at detoxing and processing tryptase so it no longer can even register on a test. As for the test itself, you need a baseline reading taken when you're healthy and feel good, and then a second sample taken no more than 20 minutes following a very acute flare. That's not even enough time to get to a blood lab if you're at home or work. My specialist says the best diagnosis and the only method he uses is to treat the suspected condition with common mast cell stabilizers over the span of at least 9 months and monitor for improvement of symptoms. If there is good progress made, then it's MCAS or mastocytosis. Mastocytosis requires tissue biopsies of wherever you suspect you have an excessive growth of mast cells. However, this is challenging as the body naturally has high levels of mast cells in certain places, such as the vagine, uterus, nose, throat, eyes, etc. Basically anywhere we need a first line of defense because delicate tissues and mucus membranes are exposed. Other tests such as prostaglandin D2 and cytokine levels are a bit more reliable. But most specialists at this point t diagnose based on eliminating other possible causes, testing for true allergies, and seeing if mcas treatment is successful. Hopefully this makes sense and is helpful. Mayo Clinic consults with my soecialist, btw. He is nicknamed the "Dr. House of Minnesota."

Thank you!

I have not found immunologists in oc calif. My case is extreme . I just need. Doctors that actually know more then me. Happy I found you.

@claire5399

5 ай бұрын

San Diego .

@shilk4301

21 күн бұрын

Dr hariri Los Angeles

Wow I have severe dermatagraphia. Always have. I can't take even the fastest of showers because I put up like the Pillsbury dough boy. I do have MCAS. It was my 5th diagnosed autoimmune disorder after a bad gastric surgery that sent me reeling. Are you finding that most MCAS also have POTS? There was a year between the 2 diagnosis. I've thought about allergy testing but am afraid of what that could do.

I have an extensive lifelong history of allergic reactions/ intolerances to many foods, medication, iodine contrast dye, etc to the point of hospitalization. Now, it is to the point where I can barely eat anything without some sort of gastrointestinal consequence. I had allergy testing, both igg and ige for all of the things that I know affect me, but all of that testing came back negative. I have EDS, SFN, and dysautonomia. I suspect I have MCAS as well. It is very discouraging. I just tried this test and all I get is a red line, no welt or raised bumps so I don't think I have dematographism.

So what do you do if you have this?

I have exactly that skin reaction and gastro-intestinal symptoms, however my GP advises the serum tryptase test is normal results so MCAS can't be considered, he dismissed the symptoms as being due to cEDS.

@auviamiller7383

Жыл бұрын

Sorry for your medial troubles. EDS and MCAS usually co-occur! Your doc must not know much about EDS.

I’m really hoping you can see this comment Dr Mitchell. I’m 51 now but I first noticed hyperdermatographism on my body when I was 14. Yes I could write on my body, cool but weird. Anyway, I realized the past few years (3-5???) that it went away. But in the past 3 years or so, I’m now getting overall body itching, especially at night. It feels like pins/needles but super itchy. I’d get the sensation on my back, arms, face, legs, abs… basically everywhere. Do you know if MCAS can transition from decades of hyperdermatographism to overall severe itching?

I've got the same. Marijuana helps me as Ledum Palustre extract and Potassium Ascorbate (the pure formula) to get rid of symptoms

What's the best doctor to see foe this?

Just had an evaluation yesterday and one of the first things she asked was if I ran this pen over your skin, would it puff up and turn red. Which was a yes. Still going for some bloodwork and then they are switching me to the immunologist in the practice. I Have pots and hypermobile ehlers danlos, and MCAS is a very common comorbidity. We’re hoping doubling up Zyrtec can help control symptoms but if not I may need something stronger.

@duranteoriginals7153

9 ай бұрын

Be Careful about doubling up too much at one time. Most especially if you're past 60. I've had problems feeling faint from doing that.

@christinadavenport5822

8 ай бұрын

xolair

@maryamjoha

8 ай бұрын

Cromolyn is good if you don't have any true allergies, but have MCAS.

omg i know i have this i will call my dr today

Hello! Thank you for your video! I am unclear on if it is the "it will appear on skin" that matters or if it is the speed of the skin changing? If I draw on my stomach it will not turn red quickly like on the person in video, but if I wait maybe 5 or more seconds, it will turn red and readable and last for maybe 5-15 minutes or so. There's not much of raised skin, only redness. Could I have MACS/Dermatographia? I tried on 2 people here too, and on one of them nothing happens, and the other person has only the vaguest of redness. So I wonder, is speed a parameter here? Or just the visibility?

@camillanilsson8947

Жыл бұрын

I guess that if you get this in some seconds, as you described - then it is Dermographism.

@debbiegraham3145

11 ай бұрын

Mine is red if I rub ir touch it no welts but I have mcas

Statistical medicine fails when you are one of those patients who deviate from the mean. There will be a long list of commenters who don't have dermatographism but do have MCAS.

I’m wondering how many people are living in mold, or have had mold exposures & belongings are contaminated. It can be a part of ongoing mast cell illness.

@matt566

11 ай бұрын

likely generalization fallacy

@romainecalm1108

9 ай бұрын

Nope, current reality

Yep this is me

Is it still dermatographism if the scratch turns red instantly, but it doesnt cause the raised inflammation? My skin is allergic to fragrances, has chronic full body folliculitis, skin flushing if I drink 1 drink, I have brain fog, headaches, asthma, IBD ulcers and symptoms but tested negative for IBD blood test, gluten/dairy food intolerance, endless fatigue, writing on my skin turns red quick but no bumps.

@wacoffey

4 ай бұрын

What is an IBD blood test?

That's how my GI doctor started thinking I had it. After, she did an endoscopy with the appropriate tincture (if that's how it's called) and bingo.

I wish you were my doc! Even after getting diagnosed half of doctors I meet have no idea how to treat me or even claim I am just crazy and not sick. lol Dude... I prayed for crazy. There are pills for that! NOPE I just HAD to have MCAS with corn allergy. The worst possible combo.

I was on a high dose of prednisone when they tested my tryptase. Would that cause a low tryptase result?

@TheMallyjoe

Жыл бұрын

Probley so

I don't really get the skin stuff. I get the anaphylaxis, constantly. I can barely eat without my tongue and throat closing so I choke. I have an epi. That works for about an hour then the reaction comes right back.

@matt566

11 ай бұрын

you probably want to get more aggressive workup and treatment

@cloverspalace

10 ай бұрын

Same I have my epipen on me but doctors don’t think it’s MCAS…

@maryamjoha

8 ай бұрын

​@@cloverspalaceFight until you get the proper diagnosis. Doctors spend less than 15min in 8 years on mast cells. If you think you have it, then you have it. True diagnosis comes from good response to mast cell stabilizers like ldn and cromolyn.

@maryamjoha

8 ай бұрын

Cromolyn, LDN, and compounded loratidine are what got me eating again. If you have true allergies, allergy shots might help. But you have to be stable enough for them. Xolair is a good option if the reaction is the result of a true allergy. I don't have any true allergies, but was reacting to every single thing I ate.

Will this reaction still take place if the person takes daily antihistamines? If so I assume they should not take antihistamines before a test. Is this correct?

@maryamjoha

8 ай бұрын

No, when I'm taking my regular antihistamines and supplements, I don't have the dermatographism. It also can be minimal during the progesterone phase of a woman's cycle. It's a very hit and miss test. MCAS is best diagnosed when a patient responds well to true mast cell stabilizers like cromolyn sodium, khella extract, low-dose naltrexone, and similar medications. My specialist says tryptase is less than 5% accurate and dermatographism testing is roughly 20% accurate.

plz help

I literally have this yet doctors still say it's just health anxiety

@xLovebirdx

Ай бұрын

Doctor's are effing retarted. Try a low histamine diet and OTC antihistamines and supplements for mast cell stabilizer

Im confused everyone who I scratch on the back it turns red. So how can you tell the difference?

@laurelnoel5089

Жыл бұрын

The lines would be raised like a bump or hive, not just red.

@danielcarriere3454

Жыл бұрын

Thanks! How hard do you push when drawing the line?

@laurelnoel5089

Жыл бұрын

@@danielcarriere3454 About the same amount of pressure you use when writing on paper. Your inner forearm is also a good place to test this.

@EmuEmi

Жыл бұрын

@@laurelnoel5089 hmm i was diagnosed though and i only get redness and burning skin.

If you've gerd Ibs cancer rashes migraine a huge list you will have mcas.

I have this and myskin is brown!

⛳️Try Histaminum 30 Homeopathy medicine. My doctor is giving me.

That fellow is overweight, probably some inflammation from that alone you did not mention.

I have been diagnosed with MCAS, but I do not get the skin reaction. Now I'm questioning the diagnosis…

@winxclubstellamusa

Жыл бұрын

Not everyone who has MCAS reacts like this, the skin association is NOT 100%. Don’t question your diagnosis. MCAS symptoms are countless as the mast cells affect the entire body’s systems.

@abstuli1490

Жыл бұрын

Not everyone with MCAS has the same symptoms. Mast cells have more than 200 different types of receptors that can be activated and can release over 1000 different types of mediators. Which meditators and where they are released and in what quantity can cause all possible symptoms imaginable. What often characterizes those with MCAS is that they often have many different symptoms that doctors cannot explain, which can often lead to an ME/CFS diagnosis.

My skin doesn't do that so that means you don't have mcas?

@ErinWilke

4 ай бұрын

You could still have it, but most people with MCAS do get this

Most gps know nothing. And that's the sad truth

I don't watch videos with skams

It's multisystemic and it's evil.