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.
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!
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.
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.
That's because those 3 are very commonly seen together. In fact I was told it's more rare to only have 1 of the 3. I'm trying to get all 3 diagnosed atm and it's rough bc my doctors treat me for these conditions already but refuse to diagnose them all under the guise of allergies and my MS (Multiple Sclerosis, which is also commonly seen with POTS)
@FaeCallaghan this is sadly what we all are dealing with. I was told that, on average, it takes 5-8 years to get any ONE of them diagnosed, let alone how long it'll take to get all 3 diagnosed.
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.
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.
Dear Mindy, I found your story interesting. My 1st anaphylactic attack, combined with hives and swelling, was 12 years ago. This new health issue then progressed quickly to having monthly attacks that also included 4-types of eczema, lethargy, gastro intestinal issues, skeletal inflammation, and 3-days of coma like sleep. This was before much was known about MCAS and my local health region took me on as a special case (BTW: today I'm a 67 y.o. male Canadian). I saw many Doctors (GP's, ENT, Allergist, Internal Medicine, Neurologist, etc.) and had many tests (MRI's, CT scans, Ultrasounds, ICG, IKG, IMG, skin biopsy, monthly blood tests, etc.). I had to quite work and live in isolation for over a decade. Today, I am diagnosed with MCAD (a form of MCAS and Masto cytosis combined), Histamine Intolerance, Inflammatory Bowel Disease, Skeletal Inflammation. My trigger to all this nastiness is sulphites (sulfites) and that's a whole other story of its own. Surprisingly for a old guy like me every other part is in excellent condition. But here's the reason I'm writing, I'm now taking a mast cell stabilizer drug called Sodium Cromoglycate (or Nalcrom) and feel almost normal again. I take 1ea 100mg capsule of this drug and 1ea 20mg tablet of Cetirizine twice a day. I still can't eat any foods containing sulphites and need to avoid any high histamine foods but that's a small price to pay ... to feel great! I hope this helps you. 👋😎
Mindy, he just said 90 percent of people with MCAS WILL have skin that stays red. So maybe you're in that 10 percent? Calm your tots, you sound like a henpecking PITA, I feel bad for your husband....😅
@@Texasgirlinacrazyworldby saying "so this video didn't really help me" doesn't mean I am condemning the creator. The part I am not calm about is the three years of my life I will never get back because I mistakenly thought that medical doctors would be interested to help me get better but I actually should be reporting them for how they mismanaged my case.Thanks for your compassion, Light Worker. Did you always know you wanted to be an official YT troll when you grew up or did it just kind of happen?
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
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.
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.
@@joeynarciso94 It's heavily implied and that's enough to confuse some people in this already dizzying subset of conditions. My goal is only to help further educate, as falling through the cracks due to any level of misunderstanding can be fatal with this condition. Unfortunately doctors say things that are taken as a hard and fast rule, when in reality it is much more nuanced and difficult to pinpoint with each individual.
I didn't finish that, but I appreciate it. I've been running around trying to find out how to prove that I without a shadow of a doubt have my health conditions so I can finally get diagnosed because I hit so many checkmarks on so many health conditions, and am actively being treated for them but without a proper diagnosis for 99% of them
@@ambersmithpxt That's extremely common for us. The official diagnosis comes when we react properly to treatment for those specific conditions. That's the challenge with "diseases of elimination". For me, I had mcas since infancy. We always knew something was wrong, but it wasn't until I was dying at age 30 that we finally tracked down a genius specialist who was somehow able to squeeze me in asap. Saved my life. Total God thing the way everything lined up.
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 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 have corn allergy too and react to all the corn derivitives. I had gotten referred to a place to do the MCAS testing but the test had several parts: blood, urine and then I had to take antihistamines to see if they stop the reactions. But all the antihistamines contain corn!! Plus in the past - years and years ago - antihistamines only give me paradoxical reactions! One had made my throat go totally numb on the inside (Benadryl) and Nyquil had made me wide awake like a hoot owl when it was supposed to put me to sleep. And since then I am way more sensitive now. These days corn derivitives gives me breathing problems. How is taking a product containing corn (the antihistamine) supposed to stop a reaction from other corn?? It makes no sense. I have the skin writing too. I am going to the allergist tomorrow as now it seems I am allergic to milk products and they seem to make my breathing worse than the corn. Unless there is corn in the milk?? And the cheese burned my mouth like acid and left raw spots on my tongue. Currently living on carnivore diet plus a piece of fruit a day. But I react to most fruits + veggies too.
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.
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.
Idk if this will help but I take 10mg cetrizine, 10 mg montelukast, 50mg benadryl & 30mg famotidine 2x a day MINIMUM and that covers normal days for me. Might not help you enough, but on my worse days I'll take this dosage 4x a day with the benedryl at 100mg instead of 50 which helps but I can tell in my stomach that the 4x is only for the worst of times. 2x daily I have no problem with, with or without food. However for the sedation effects....if you haven't taken that much benedryl regularly before I recommend just finding a better dosage of cetirizine for you because the combo alone can make people drowsy let alone with the benedryl too. I've had to take large doses of benedryl on a regular basis since childhood so it doesn't really sedate me
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.
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.
I have hEDS and instead of my skin raising Hell like this, it indents instead, very quickly (imprints on my skin from clothing) I have most of the MCAS hEDS skin issues like KP, Livedo, Ichthyosis, psoriasis, friction intolerance with clothing, etc. but no wheals on my skin.
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?
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.
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’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.
I would like to try this test on a few other people before I believe it. I'm able to draw all over myself with a blunt object, but as far as I can remember, my skin has always done that. I thought it was normal.
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.
@@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.
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.
It’s for me same party almost every day . I wake up and have no swollen throat and skin . As soon as I leave my sleep room o get swollen. I am now in umcg Groningen and tested on all kind of allergic reaction. Blood and urine are checking, I got injections 10 milligram tavegil and it’s working for 2 hours. What is going on ??
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 have had dermatographism for years... recently diagnosed with chronic uticaria. I also get gi symptoms, POTS, low BP, running nose, itchy eyes, ears and throat and now getting wheezing occasionally from certain smells. I also have bern diagnosed with hEDS. Could my chronic hives be due to mcas? Thank you.
Dr Afrin says its how long it stays red. Like 15 minutes or more. Mine stays red for 20+ minutes. In normal people it may turn red but then quickly fades away.
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?
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.
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.
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.
You're one of the few who can see it. Even laughing or crying even coughing can bring on an an attack for me!
Did you have visual problems?
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.
If you can find someone to prescribe a trial of antihistamines just to see if they help, it changed my life.
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!
You can have it and a normal tryptase.
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.
@@ninap6893 then how do you get a diagnosis or for anyone to believe you
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.
That's because those 3 are very commonly seen together. In fact I was told it's more rare to only have 1 of the 3. I'm trying to get all 3 diagnosed atm and it's rough bc my doctors treat me for these conditions already but refuse to diagnose them all under the guise of allergies and my MS (Multiple Sclerosis, which is also commonly seen with POTS)
Those are all related, dude.
Same but I can’t get a doctor to believe me
@FaeCallaghan this is sadly what we all are dealing with. I was told that, on average, it takes 5-8 years to get any ONE of them diagnosed, let alone how long it'll take to get all 3 diagnosed.
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.
Did you have visual problems?
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.
Let's face it. Doctors just don't like to do their homework for the most part.
Dear Mindy, I found your story interesting. My 1st anaphylactic attack, combined with hives and swelling, was 12 years ago. This new health issue then progressed quickly to having monthly attacks that also included 4-types of eczema, lethargy, gastro intestinal issues, skeletal inflammation, and 3-days of coma like sleep. This was before much was known about MCAS and my local health region took me on as a special case (BTW: today I'm a 67 y.o. male Canadian). I saw many Doctors (GP's, ENT, Allergist, Internal Medicine, Neurologist, etc.) and had many tests (MRI's, CT scans, Ultrasounds, ICG, IKG, IMG, skin biopsy, monthly blood tests, etc.). I had to quite work and live in isolation for over a decade. Today, I am diagnosed with MCAD (a form of MCAS and Masto cytosis combined), Histamine Intolerance, Inflammatory Bowel Disease, Skeletal Inflammation. My trigger to all this nastiness is sulphites (sulfites) and that's a whole other story of its own. Surprisingly for a old guy like me every other part is in excellent condition. But here's the reason I'm writing, I'm now taking a mast cell stabilizer drug called Sodium Cromoglycate (or Nalcrom) and feel almost normal again. I take 1ea 100mg capsule of this drug and 1ea 20mg tablet of Cetirizine twice a day. I still can't eat any foods containing sulphites and need to avoid any high histamine foods but that's a small price to pay ... to feel great! I hope this helps you. 👋😎
Mindy, he just said 90 percent of people with MCAS WILL have skin that stays red. So maybe you're in that 10 percent? Calm your tots, you sound like a henpecking PITA, I feel bad for your husband....😅
@@Texasgirlinacrazyworldby saying "so this video didn't really help me" doesn't mean I am condemning the creator. The part I am not calm about is the three years of my life I will never get back because I mistakenly thought that medical doctors would be interested to help me get better but I actually should be reporting them for how they mismanaged my case.Thanks for your compassion, Light Worker. Did you always know you wanted to be an official YT troll when you grew up or did it just kind of happen?
This test seems bogus to me.
MCAS can come from hidden mold in your house or also from vaccines
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
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.
Have you tried a low histamine diet
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.
He didn't say all MAST cell patients have dermatographism
@@joeynarciso94 It's heavily implied and that's enough to confuse some people in this already dizzying subset of conditions. My goal is only to help further educate, as falling through the cracks due to any level of misunderstanding can be fatal with this condition. Unfortunately doctors say things that are taken as a hard and fast rule, when in reality it is much more nuanced and difficult to pinpoint with each individual.
@maryamjoha as someone who's currently falling through the cracks for nearly all of my health conditions....I appreciate your post.
I didn't finish that, but I appreciate it. I've been running around trying to find out how to prove that I without a shadow of a doubt have my health conditions so I can finally get diagnosed because I hit so many checkmarks on so many health conditions, and am actively being treated for them but without a proper diagnosis for 99% of them
@@ambersmithpxt That's extremely common for us. The official diagnosis comes when we react properly to treatment for those specific conditions. That's the challenge with "diseases of elimination". For me, I had mcas since infancy. We always knew something was wrong, but it wasn't until I was dying at age 30 that we finally tracked down a genius specialist who was somehow able to squeeze me in asap. Saved my life. Total God thing the way everything lined up.
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.
San Diego .
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 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 have corn allergy too and react to all the corn derivitives. I had gotten referred to a place to do the MCAS testing but the test had several parts: blood, urine and then I had to take antihistamines to see if they stop the reactions. But all the antihistamines contain corn!! Plus in the past - years and years ago - antihistamines only give me paradoxical reactions! One had made my throat go totally numb on the inside (Benadryl) and Nyquil had made me wide awake like a hoot owl when it was supposed to put me to sleep. And since then I am way more sensitive now. These days corn derivitives gives me breathing problems. How is taking a product containing corn (the antihistamine) supposed to stop a reaction from other corn?? It makes no sense.
I have the skin writing too.
I am going to the allergist tomorrow as now it seems I am allergic to milk products and they seem to make my breathing worse than the corn. Unless there is corn in the milk?? And the cheese burned my mouth like acid and left raw spots on my tongue.
Currently living on carnivore diet plus a piece of fruit a day. But I react to most fruits + veggies too.
Did you have visual problems?
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.
Same! Thank you so much for your comment I nearly cried
⛳️Exactly.. One symptom does not diagnose the whole syndrome.
Can this cause body odor?
Did you have visual problems?
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.
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.
xolair
Cromolyn is good if you don't have any true allergies, but have MCAS.
Idk if this will help but I take 10mg cetrizine, 10 mg montelukast, 50mg benadryl & 30mg famotidine 2x a day MINIMUM and that covers normal days for me. Might not help you enough, but on my worse days I'll take this dosage 4x a day with the benedryl at 100mg instead of 50 which helps but I can tell in my stomach that the 4x is only for the worst of times. 2x daily I have no problem with, with or without food. However for the sedation effects....if you haven't taken that much benedryl regularly before I recommend just finding a better dosage of cetirizine for you because the combo alone can make people drowsy let alone with the benedryl too. I've had to take large doses of benedryl on a regular basis since childhood so it doesn't really sedate me
Is there any relation to methylation? i’m homozygous for MTHFR and have histamine issues. I easily flush and turn red
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.
Sorry for your medial troubles. EDS and MCAS usually co-occur! Your doc must not know much about EDS.
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 hEDS and instead of my skin raising Hell like this, it indents instead, very quickly (imprints on my skin from clothing) I have most of the MCAS hEDS skin issues like KP, Livedo, Ichthyosis, psoriasis, friction intolerance with clothing, etc. but no wheals on my skin.
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?
I guess that if you get this in some seconds, as you described - then it is Dermographism.
Mine is red if I rub ir touch it no welts but I have mcas
I've got the same. Marijuana helps me as Ledum Palustre extract and Potassium Ascorbate (the pure formula) to get rid of symptoms
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.
What is an IBD blood test?
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?
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’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.
likely generalization fallacy
Nope, current reality
Yep....
@@matt566 No, idiot. It's not. Educate yourself.
I would like to try this test on a few other people before I believe it. I'm able to draw all over myself with a blunt object, but as far as I can remember, my skin has always done that. I thought it was normal.
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.
you probably want to get more aggressive workup and treatment
Same I have my epipen on me but doctors don’t think it’s MCAS…
@@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.
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.
It’s for me same party almost every day . I wake up and have no swollen throat and skin . As soon as I leave my sleep room o get swollen. I am now in umcg Groningen and tested on all kind of allergic reaction. Blood and urine are checking, I got injections 10 milligram tavegil and it’s working for 2 hours. What is going on ??
What's the best doctor to see foe this?
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.
O my god! I will show this test to my doctor
I have had dermatographism for years... recently diagnosed with chronic uticaria. I also get gi symptoms, POTS, low BP, running nose, itchy eyes, ears and throat and now getting wheezing occasionally from certain smells. I also have bern diagnosed with hEDS. Could my chronic hives be due to mcas? Thank you.
Zyrtec is the only thing that has helped the inflammation go down. Hope this helps someone out there.
I literally have this yet doctors still say it's just health anxiety
Doctor's are effing retarted. Try a low histamine diet and OTC antihistamines and supplements for mast cell stabilizer
Don't let them gaslight you. Search for a mast cell specialist..
What can we do against Macs?
Thank you!
What doctor can diagnose this?
Im confused everyone who I scratch on the back it turns red. So how can you tell the difference?
The lines would be raised like a bump or hive, not just red.
Thanks! How hard do you push when drawing the line?
@@danielcarriere3454 About the same amount of pressure you use when writing on paper. Your inner forearm is also a good place to test this.
@@laurelnoel5089 hmm i was diagnosed though and i only get redness and burning skin.
Dr Afrin says its how long it stays red. Like 15 minutes or more. Mine stays red for 20+ minutes.
In normal people it may turn red but then quickly fades away.
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?
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.
I was on a high dose of prednisone when they tested my tryptase. Would that cause a low tryptase result?
Probley so
omg i know i have this i will call my dr today
It's multisystemic and it's evil.
That fellow is overweight, probably some inflammation from that alone you did not mention.
I have this and myskin is brown!
⛳️Try Histaminum 30 Homeopathy medicine. My doctor is giving me.
Yep this is me
I have been diagnosed with MCAS, but I do not get the skin reaction. Now I'm questioning the diagnosis…
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.
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.
@@winxclubstellamusa Always question an idiot who tells you not to question your diagnosis.....😂💩
plz help
My skin doesn't do that so that means you don't have mcas?
You could still have it, but most people with MCAS do get this
I don't watch videos with skams
You just did, fool.
Exclude lyme