I also have Eds mcas and pots Ive been having problems so long and I was ignored I really hope they educate doctors so we can start earlier management to help us live with less pain!
I have various alergies that hace been increasing since I was 15 years old, doctors won't listen to me, I really want to met someome like me to talk and maybe understand what's wrong with me, I'm tired of listening it's emotional, of being prescrpited the stupid loratadine that is just like sugar for me
Edwin Hubble if you would like to chat I totally understand your pain and I’ve been living with these issues my whole life explaining anything to a doctor is tough they suck 😂 you can message me for my number or dm me on insta Justbambitious love ya hun take care look forward to talking
Honeysuckle Blossom Edwin Hubble if you would like to chat I totally understand your pain and I’ve been living with these issues my whole life explaining anything to a doctor is tough they suck 😂 you can message me for my number or dm me on insta Justbambitious love ya hun take care look forward to talking
Yes, I hope doctors become more aware of how to find problems with this. It’s honestly so sad and depressing living with pain. No one understands because for the most parts you look fine but on the inside your just exhausted and feeling like your body has the flu with all the aches and pain. I rash out when water hits my skin. Cold and hot effects it. Going outside is not the same anymore. It’s always something new and random. Stomach issues is awful too, along with acid reflux. 😢🤦🏼♀️
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!) I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS). I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without. I’m starting low dose naltrexone, Benadryl twice a day and aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more and improved less pain, increased energy and problems in general moving forward. (LDN is known to improve inflammation and help your immune system fight back). God bless and I wish you all the best in your pursuit to find answers.
Hi, I'm from México but I can understand a bit of English. I have been suffering various alergies like synthoms since I was a kid but somewhere in my childhood the alergies increased and they have been increasing since then, for example, when I was 19 I could eat eggs with no bad reaction, time passed and I became alergic, same goes with many foods and chemicals, the doctors I've asked about this just ignore me, this has been very hard, having pain is not the only way to suffer, I really want to find talk someome like me, yo find what's going on with my body, I haven't met anyone like me yet...
Oh my gosh me too they symptoms they described too(e.g hypermobility, baby teeth that don't fall out, chronic pain,allergies) , plus my allergies got really bad all of sudden and they are very unpredictable. My allergist doesn't seem very concerned with the matter even though my Montelukast has stopped working.
This was great, I've been looking for "how to get a man" for a while now, and I think this has helped. Ever heard of - Kenora Panameron Eradicator - (should be on google have a look ) ? Ive heard some amazing things about it and my buddy got amazing success with it.
Check out also for low dopamine in the brain. If you are a Highly Sensitive Person, you already have lower dopamine than others. Where there is low dopamine, there's more activation in mast cells. Treated with dopamine agonist (if you have low dopamine), antihistamines (H1, H2), vitamin D, (a small amount) injection of adrenaline under the skin of your belly. Occasional cortisone. Some also benefit from IV saline infusion, MCAS comes with dysautonomia. (You can also have EDS, if hypermobility is present)
I’m in the process of trying to get diagnosed and the only correlation I could find between frequency of episodes was when I ended up on Claritin on two occasions. On my sixth doctor trying to get the diagnosis but I’m almost certain is Mast Cell Activation. Presently I’m in the hospital with Covid (triple vaxed but I also have an IgG subclass deficiency and asthma) and had an episode while here. The hospitalist was willing to address the issue and I’ve been getting an H1 and H2 antihistamines and it definitely helped. He has also drawn blood the the IL1, IL6, CH50 and Tryptase levels. I live near enough to Boston and can access expert care so hopefully I won’t end being one who it takes 6-7 years to get diagnosed.
Excellent Video! Apologies for the intrusion, I am interested in your opinion. Have you heard the talk about - Ganrayden Peerless Gratification (should be on google have a look)? It is a good one of a kind product for eradicating your urticaria without the hard work. Ive heard some incredible things about it and my m8 at very last got astronomical success with it.
Lovely Video! Apologies for the intrusion, I am interested in your opinion. Have you heard the talk about - Ganrayden Peerless Gratification (google it)? It is a smashing one off guide for eradicating your urticaria minus the hard work. Ive heard some unbelievable things about it and my work buddy finally got astronomical success with it.
Lovely Video! Apologies for the intrusion, I am interested in your opinion. Have you heard the talk about - Ganrayden Peerless Gratification (google it)? It is a smashing one off guide for eradicating your urticaria minus the hard work. Ive heard some unbelievable things about it and my work buddy finally got astronomical success with it.
Appreciate Video clip! Apologies for the intrusion, I would appreciate your thoughts. Have you researched - Ganrayden Peerless Gratification (erm, check it on google should be there)? It is a smashing one of a kind guide for eradicating your urticaria minus the normal expense. Ive heard some super things about it and my coo-worker after many years got amazing success with it.
Well this is exactly what I’m Going through also. Was sent to er two days ago with a mass cell flare! Finally dr’s Need to realize that this is not just allergies!!! I had a skin scratch test and was allergic to the SALINE! The negative that should have no reaction! I’m so glad these dr’s are looking into this ! I feel like I’m educating my own family dr of this, as he is not even educated much on this
It’s very tough finding a doctor that knows of it let alone how to treat it. If you ever go into an ER make sure they know about it before treating you.
Same story! 😣😭 Been suffering from little “allergy” nuisances my whole life. After I got Covid in April 2021 my health went severely downhill! Here we are June 2024 and I’m STILL suffering!! So many people who are suffering with long Covid have exactly this, MCAS!! It has definitely been under diagnosed, and now Dr’s and specialists are starting to realize I think just how prevalent it is. A mast cell specialist sure makes the criteria difficult to come in and be seen tho! I am having to jump through hoops and stupid BS just to get an appointment scheduled! I’ve had a lot of testing over the past few years which should be enough! Went to a Hematologist and had over $1000 worth of blood work done not to mention all the bloodwork I had done in the years prior to that. All my allergy markers are elevated, Triptase and IGE included. Now they want me to do a 24 hour urine test before they, “then decide if an appointment is necessary”…. ?!!!? REALLY?! So you would let me continue to suffer?! I even reached out to the Mayo Clinic to see if they were an option and was told by the lady who called me back that between all their facilities they don’t have anyone who specializes in MCAS. WTH?!!!! How frustrating is this!?! I know this video is 8 years old and they have come up with some treatments that are available now. I hope I get help and anyone else suffering NEEDLESSLY! ❤️❤️
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!) I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS). I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without. I’m starting low dose naltrexone, Benadryl twice a day and aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more and improved less pain, increased energy and problems in general moving forward. (LDN is known to improve inflammation and help your immune system fight back). God bless and I wish you all the best in your pursuit to find answers.
Also related to Asperger's ADHD add.ime hypomobility stretchy skin in elbows heal with keyloids I had a cracky neck as a kid.we suffer also with pyroles and leaks ime unsure what is causing my pain if it's the atlas and atlas Dr said it was my jaw.had CFS pots now it's more fybromyalgia my allergies lot better how are you
I have systematic mastocytosis I take sodium cromolyn and mix it with water, lots of zertec (generic works too) and montelkaust to help with breathing and head pains. Try getting your doctors to do blood test, bone density test, bone marrow test, and a 48 hour urine test. After that you should know if you have a mast cell disorder. Stay strong guys we will be ok 😊
not sure if you are aware, but medical marijuana is a Mast Cell stabilizer. It is a true life saver for me. I have MCAS, EDS, Fibro, etc, blah, blah... hope this helps someone.
@@bubblesbubbles3415 I had to do trial and error to find what worked. I strongly recommend trying Vape- it doesn't stink quite as much to me, and has a quick response. that said I use both Sativa and Indica, and just recently started using edibles. Go to a dispensary and ask questions- most of the people are totally understanding, willing to help and are very non judgmental. I took 2 1/2 to 3 years to find what I use now, but my pain is 1-2 instead of off the charts. I am so close to being normally active, it is scary. I wish you luck, and hope that you can find what works.
The hypermobility issue will pretty much solidify that you have Ehlers Danlos Syndrome. EDS is a collagen disorder, mast cells make up the extracellular matrix which is a bunch of collagen. Basic science says cells make up tissue which makes up organs, etc etc. So of course a connective tissue disorder will have connective tissue cells act up. So many people with Ehlers Danlos Syndrome are struggling to cope with all these symptoms because doctors keep recategorizing syndromes and disorders that tell the same story! I shouldn't have to spend money and time to go back and forth with doctors to find out I have EDS pots and mcads because some doctors think by diagnosing you with EDS it goes without saying you have pots and mcads, and other doctors think you have to be individually diagnosed. And then all the doctors argue over what to call your condition.
@@Cw-wi6uj if you look up the beighton score scale that is what mayo clinic used to diagnose me with ehlers danlos. For pots when I stand up my blood drops to my feet so my feet turn purple and I'll get super light headed sometimes close to passing out. My heart will randomly go into TAC even while resting. Once I had a heart rate shoot up to 185 and I was just sitting. For mast cell it's a lot of allergic reactions to the most random things. Breakouts, facial flushing, brain fog, tongue swelling. It's different for everyone and not everyone reacts to the same thing. To diagnose pots you'll do what's called the poor man's tilt table test and measure your orthostatic vitals with a blood pressure cuff and heart rate monitor. If your HR changes by I think 30bpm when you stand up that's a big sign of pots. For mast cell they took my blood and tested tryptase levels and mine were over 11 which is a direct confirmation of mast cell. I had to go to mayo clinic in arizona a bunch of times to help cobble me back together again. For my pots diagnosis I had to see an autonomic nervous system neurologist. For mast cell it was an immunologist. Eds type 3 was the genetics doctor. After a couple years I've been able to get out and about but it's been a long road and you definitely need to adjust your lifestyle. Sorry for the novel I hope this helps you!
@@lilruca3160 thank you for your in depth reply I tried to type you a long reply back but for some reason TH-cam won't let me post it. Next week I go to Germany for a repeat treatment I had 2 years ago check out Dana white UFC he talks about the treatment in dusseldorf Germany. I am sorry to hear how bad you have had it and Glad to hear things are better for you maybe never perfect but better 🙏
Hows everyone doing.I have MAST CELL ACTIVATION SYNDROME. I have had everything. It sucks it has really consumed me.Its hard tl plan anything because im sick all the time.Its killed my marriage. You know how i feel, to all my people with this disease.
What do you feel? I think I have this, can we talk? I've several alergies that won't stop increasing, every year I literally get like 5 new alergies and doctors won't listen to me!
I'm french and noone known this syndrome, but I suffer it from my birth, and now at 40, I know, you must have antihistaminiques H1 and H2 and don't eat your trigger, maybe Sun or heat variation and sport. Stay connect if you want, but m'y english is not so good. Keep going
I have this syndrome and have been using quercetin twice a day for this past 3 months and can now eat foods that I cut out of my diet. Recently I did have a histamine attack and it lasted for a few days. The rage that comes up in me makes me so miserable that I can’t be around people. Oh ya I am 68 going on 16 and I have now increased to 3 per day.
I was diagnosed with mass cell activation disorder last month, I’m receiving treatment and I’m finally starting to feel better, the internal and external hives are awful , I’ve had hives the size of baseballs in diameter all over my body , I have no family history of this illness either
Dana Shannon I have to take two Epsom salt baths a day. But the taste sometimes is in your throat . If you used to much. But I feel so much better. I just wanna stop the baths but it seems like this is a rare thing.
@@metanoiabooks3729 special blood and urine tests , I don’t know what the tests were called but I remember they had to put my blood on ice as soon as they got it into the vials , it was very odd to see the blood get put on ice immediately and the urine test I had to do it was a 24 hour urine collection thing and I had to get it back to the lab as soon as possible once I finished the collection because they had to send it to a specialist lab out of state for the results.
I wish I could find a doctor to diagnose me after all of these yrs of similar issues. I suffer with hand & feet redness/heat/swelling everyday after I eat and I get severe asthma attacks. My doctor has tested my blood for nearly everything but the results keep coming back within normal ranges. I have terrible IBS and skin rashes on my arms/neck/legs too. I was diagnosed with severe food allergies but avoidance diets haven't helped reduce my symptoms. Since I started experiencing these issues, I went from 138lbs down to 107lbs from not being able to eat in the past couple of years. My doctor finally told me last week that he is out of options and that these symptoms are probably just anxiety/stress related. I find it hard to believe that these physical food-related symptoms are just manifested in my head all these years. I was adopted from South Korea, so I don't have any knowledge of my own family medical history. It has become a living nightmare, but I am hopeful that this may be something similar to what I am experiencing.
Hi A Jens, maby you can ask your doctor to give you antihistamine. My daughter is 13 years young and she had suffered from severe allergic reaction almost all her life. Nobody could find what she had, But I never gave up and in the beginning of this year I found it. It was food related only not in a known form. You see food releases all types of allergic substances for in stand a green banana is full of starch a ripe banana contains more sugar. This is an simple example. Now thing of every food you eat releases some type of histamine, like if you prepare food in the morning and eat it in the evening you have to re head that food instantly there are other substances being released. My daughter can not eat old food even when it's prepared in the morning. She can not eat a list of things: spices, tomato's , spinach, mango, avocado, old food, food that stands open for a period of time. THe list goes on probably everything she eat's and is known to eat releases a form of histamine. To make a long long longg story short. Al these food keep building op and building up and suddenly all at ones some type of triggers and she becomes very ill. It's a combination of things, food, warmt, stress, sleep, and skin problems. Every month she would get sick sometimes more than 7 times a month with allergic outbreaks of 8 hours long. ANd know to a high doses of antihistamine she only is very tired because the substances keep rambling in her body and her skin. But for over 7 months no severe outbreaks. I am so great full ma by it is of use for you and this simple thing can help you to. Food avoidance have no use because probably you have a build up allergy. What could mean that yes you have severe allergy but it does not go away if you avoid that food it was the same for my daughter. She eat's everything now but i have to say when she eats fast food she is very tired and gets skin rashes especially her face and arms.God bless I so hope this is the case for you.
Nat Halie Thank you! I will ask my Dr about this! I've started avoiding 'high histamine' foods and carbs. I get less hot/swollen hands and feet, but when I cheat the reactions come on immediately. Thanks again for your msg, I will def to increase anti histamines if OK'd by my doc.
Have you seen a genetic Dr? Things like Familial Mediterranean Fever have redness and swelling at joints usually in the ankles and wrists, a lot of allergies to foods and environmental agents and some people have fevers but many don't.
Alex Jensen Look up Dr.Afrin. He used to be in Minnesota and is now in NY now. Amazing Doc who took two hours with me and came up with both a diagnosis and comprehensive treatment plan to take back to my local doctors. Worth the trip to see him
Got some lab results in. My ANA and my DNA single strand both was positive. My inflammation marker was off too. My doctor is sending me to a specialist to find out what autoimmune disorder it is, if it is one. I have almost every symptom of Mast Cell. It’s so hard trying to find out why I feel bad 😞 My tryptase came back as 10.8 so I didn’t know if that’s good or bad? I never had allergies until a few years ago. I can’t hardly go outside without welping up, having a rash or something. Asma has also occurred, stomach issues, anxiety, bone pain. Some doctors in the past said everything looked good until now. My stomach doctor mentioned Mast Cell and it really makes sense with all my symptoms.
Those skin findings at 0:34 look exactly like mine :O I've had problems with anaphylaxis and all my IgE tests are negative and still I can't eat a lot of food items. Several Dr:s have put it down to histamine intolerance but to my knowledge there's no histamine in carrots or apples.
same for me. I can't eat anything now I basically try to not eat as much as possible cuz everytime I do I havew an inflammatory reationn with burning skin rapid heart rate nerve pain and all sorts of other crazy symptoms. Also When I eat certian foods or smell chemicals like gasoline car exhaust, perfumes ect I can feel my throat start to constrict and have trouble breathing.
I have MCAS but not EDsyndrome...it’s taken 20 years (after having a ruptured appendix and peritonitis in ‘98) to get CLOSE to a diagnosis....thankful for my RNP who looked at my blotchy purple legs and heard my complaints of burning sensations with extreme fatigue...SHE figured out that it was MAST cell related and she put me on Montelukast, and within 2 days my never ending rash/hives (that I had been living with for months at a time) 2 days...and it disappeared completely! I have since stared a more complex protocol, which has been helpful...but...I’m still finding weird and painful symptoms. Like most people with rare/complex health issues I’m desperate to feel better- I can barely function and I have almost zero energy to devote to anything but the basics. A formerly super ambitious hardworking artist, it’s becoming rare for me to even have energy to create. I’m eager to hear if anyone knows of any clinic or Drs who treat MCAS in the US or (my husband’s country) Italy... TIA
AMEN THANK YOU!!!! Exactly what I had replied to someone else! All these people coming out after Covid with this, myself included! I had to pay attention to my symptoms and figure it out for myself. Now these clinics that actually treat MCAS, want you to jump through hoops and have all this testing done prior to them even being able to schedule you an appointment?!!! WTH?!!! 🤬
Has anyone had activation after trauma? I have lots of inflammation already from car wreck, then fell and got a compression fracture. The next day I developed uncontrolled asthma and was hospitalized a few days later.
yes, I had chemical accident and got burned all over my body and went through a lot of mental trauma from the event and started to develop what i beleive is mcas. Now I have chronic pain and have allergic like reactions to chemicals foods stress ect. i tried to tell drs and have seen about 20 of them and none of them even knows what msac is and just keep telling me it's in my head, but now I am seeing a naturpath who knows about MCAS and she thinks I might have it.
All started about 6 months after I got covid. Also lots of relentless stressful stuff for about 2 years. Anti histamine meds and diets don’t seem to do sh1t tbh. Hundreds of bucks down and no closer to a solution. ☹️
I have mast cell activation syndrome. Diagnosed at age sixty! Î have almost every disease in the book that goes with it, asthma, allergies, ehlers danlos, dercums, chiari, chronic drippy/stuffy nose (even with meds), all over itchiness, dishydrotic eczema (not dishydrosis), myofascial pain syndrome, all of the neurological ones I've read, plus more that I can't remember just now. Get it?! Neuro includes memory?! Never mind. But there really are things I read that I recognised and can't recall !! Because I have migraines and chronic kidney disease and polymyalgia rheumatica and giant cell arteritis and fat liver (I wouldn't want to be called fatty, but just fat, so that's how my liver will have it) and those aren't a part of all this, I don't think, I do think I have a lot to learn. Seems I never stop saying that!
I'm diagnosed with Ehlers Danlos Syndrome and mast cell activation syndrome as well as postural orthostatic tachycardia syndrome. This looks exactly like my skin! I currently take cromolyn sodium oral, montelukast, ranitidine and loratadine. I avoid all my allergens food wise but still suffering terribly. At least the deep bone pain from MCAS has subsided on cromolyn.
How were you diagnosed? I'm feeling it's possible in me, but don't have typical flexibility tests to show it. Feel so sick every day, gets better later in day but never goes away.
I've had these "invisible" problems all my life! Doctors act like they'll help, but no one does. I was finally diagnosed with EDS 2 years ago. I'm 59 and the pain has been chronic for over 2 decades. I hope you figure something out. I wish I could be part of your trials. Good luck to you!
This happened to me…I thought I had food poisoning ended up with hives for 2 1/2 months off and on , tachycardia, severe diarrhea, gastritis and esophagitis, headaches, flushing and itching rashes …horrible my colonoscopy showed eosinophilic colitis and mast cell activation syndrome showing greater that 30 mast cells on high powered microscopic examination 🧐 and yeah good luck getting treatment
They related on genetics because they can't find the cause . Genetics can be a predisposition to develop certains symptoms and some specifics conditions . Toxicity of all nature should be a part of investigation to find the root of illness and so epigenetics too
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!) I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. Not the only one in my family that can, “write on their own skin”. (Another tell-tell sign of MCAS). I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without. I’m starting low dose naltrexone, aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more improved less pain, increased energy and problems in general moving forward.
This is EXACTLY what happened to me a couple of years ago and I am 59 next week!! I thought I contacted food poisoning from a lobster and ended up in the ER - I felt like I was going to die for sure. Also, I was diagnosed years ago with Osteoarthritis, I had a hysterectomy at the age of 31 due to Endometriosis and in Jr. High I broke out in a rash from some medication. A year after the lobster incident, I had a skin reaction to some chemicals on my hair, Doctor did a skin biopsy a month later because of a rash that wouldn't go away and I found out that I have Telangietasia Eruptiva Macularis Perstans, a rare form of Mast Cell disease. 😕
Yeah this is like a crazy syndrome in the medical community I have literally been told to stop thinking about my headaches and they will go away basically saying that it's all in my head. It's all in my head all right.
@@bubblesbubbles3415 well you can start to research online about how to repair the gut lining. There is a product called ion, you can purchase it online it is a liquid that helps to repair the lining of the gut. Also by ingesting things like gelatin powder and I'm not talking about jello powder it's actual gelatin powder. It's made from the bones of animals. Also a good one is bone broth soup. Dr ax if you are familiar with him. He talks about healing the gut all the time he's on TH-cam you can look him up. Basically what has been discovered is that the gut has a major connection to inflammation and overall health of the body. By eating processed foods eating out eating a lot of bread or sugars not even a lot really but just basically are high processed food diets which is most everything on the market today unless you grew it in your own garden or raised the animal yourself it's been processed one way or another. They are finding that it is destroying the lining of the gut which basically breaks down the immune system and as I said causes allergic reactions inflammation and muscles and joints. So if you're having a lot of fatigue or pain in your muscles and joints or experiencing headaches this is where you should go as they say listen to your gut. And if you are having these symptoms your gut is trying to tell you something. That's where you start is healing with the gut then it is eating the purest foods fruits vegetables if you are a meat eater the purest form of meats that you can buy and drinking lots of clean water so on and so forth.
@@gregburgess6884 I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!) I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS). I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without. I’m starting low dose naltrexone, aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more improved less pain, increased energy and problems in general moving forward. God bless and I wish you all the best in your pursuit to find answers!
This can be diagnosed after several serious reactions or injuries to pharmaceuticals. Often food and chemical allergies are present or develop. So much is left out of this video! Many symptoms involved and can take MANY years to diagnose. Not an easy diagnosis at all.
I agree. It’s a good video, but they left quite a bit. The symptom list doesn’t even cover it. It’s so varied too! Not everyone is the same as well. It’s easy to diagnose with a series of serum tryptase levels…but most doctors don’t even know about mast cell yet. So it’s not on their radar when a patient tells them their symptoms.
I hope this helps somebody. I suffer from several inflammatory conditions, including allergic rhinitis and Graves Disease. A few years ago I tried out the Buteyko breathing method, which increases your blood's carbon dioxide levels. This helped me a huge amount. New research now shows that raising CO2 levels inhibits mast cell degradation, and so reduces inflammatory attacks.
My new surgeon thinks I have this! She doesn't know what to do so she's trying to get me set up with an immunologist. Fingers crossed I finally get answers after 10 years of doctors telling me I'm fine 🤞🤞
YES!!! I have had most of these symptoms for 62 years, but have also been permanently disabled on Medicaid and SSI since I was 30 - finding anyone who'll do the proper tests for this or other "autoimmune issues" is impossible. I got sunburned severely last July, ( used to be the one of 6 siblings who NEVER burned until then), and have been suffering every moment since then, with head to toe itching and burning, rashes, red skin still on lower legs, ankles and knees without any relief. Would be great if you guys could tell the practitioners up in Oscoda, Mi that this is unconscionable. I've lost 20 lbs I didn't need to lose since July, my guts are constantly boiling, and these people are more worried about high cholesterol, which I believe is elevated because it's trying to repair damaged tissue.
@@MacchiatoSwirlGirl Social Security told me that because I hadn't worked enough quarters before ending up having to retire that I'd never get Medicare or a regular disability check. I'm 65 now and still have neither one.
Great. So no cure… Does this mean you’re on a restricted diet the rest of your life?! I thought I might have histamine intolerance. Now I’m thinking it could be MCAS. Finally seeing a Naturopath in a few days. I’ve seen countless specialists and had numerous procedures that tell me nothing. So discouraging!
No --- Sodium Cromolyn Oral, Ketotifen Oral (Alll of these are mast cell stabilizers) and are the first line treatmetn for Mast CEll ACtivation Disorders Also, Antihistimines like Benadryl, Ceterizine, are a must --- etc..
i have tired sodim cromolyn , ketotifen but it doesnt work .. no mast cell were stabilized. i am suffering from cutaneous mystocytosis since i was 16. i am tried of these things. plz help me what can do to cure thsese diseases//
Maybe fodmap-diet can help you. My son feels better with it, he has EDS and many Mastcellproblems. Natriumcromoglicat was good, too but didn´t heal. Vitamin D 3 Highdosis helps sometimes. We need it all the time. Good luck!
I was diagnosed with EDS last month. Also, my IGG levels was 4976. Three of my children also likely have EDS. We all suffer from all of the symptoms in this video. My allergist thinks I have mast cell disorder. I go for blood work tomorrow morning. Any advice? My doctors are looking to my own research to navigate through the next steps 😔 I'm suffering. I need help
Can this be a result of prescription drugs such as interferon? Eating causes me to have respiratory type allergic symptoms in combination with IBS symptoms and all since interferon.
My symptoms are that I feel hypoglycemic and I get brain fog. If I eat low carb and low histamine I don't feel as hypoglycemic and I don't get brain fog. I've had fatigue for decades.
Sir, iam singh from India , my age is 60years.Recently I developed allergy only on sole of feet and palms and also on dorsal of the both hand and feets only. Allergy is so severe and beyond control. I am repeatedly episodes of stress and taking tab pexedip. But recent allergy / pruritis is very severe. Kindy suggest what could be.
I also have Eds mcas and pots Ive been having problems so long and I was ignored I really hope they educate doctors so we can start earlier management to help us live with less pain!
I have various alergies that hace been increasing since I was 15 years old, doctors won't listen to me, I really want to met someome like me to talk and maybe understand what's wrong with me, I'm tired of listening it's emotional, of being prescrpited the stupid loratadine that is just like sugar for me
Edwin Hubble if you would like to chat I totally understand your pain and I’ve been living with these issues my whole life explaining anything to a doctor is tough they suck 😂 you can message me for my number or dm me on insta
Justbambitious love ya hun take care look forward to talking
Honeysuckle Blossom Edwin Hubble if you would like to chat I totally understand your pain and I’ve been living with these issues my whole life explaining anything to a doctor is tough they suck 😂 you can message me for my number or dm me on insta
Justbambitious love ya hun take care look forward to talking
Yes, I hope doctors become more aware of how to find problems with this. It’s honestly so sad and depressing living with pain. No one understands because for the most parts you look fine but on the inside your just exhausted and feeling like your body has the flu with all the aches and pain. I rash out when water hits my skin. Cold and hot effects it. Going outside is not the same anymore. It’s always something new and random. Stomach issues is awful too, along with acid reflux. 😢🤦🏼♀️
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!)
I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS).
I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without.
I’m starting low dose naltrexone, Benadryl twice a day and aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more and improved less pain, increased energy and problems in general moving forward. (LDN is known to improve inflammation and help your immune system fight back).
God bless and I wish you all the best in your pursuit to find answers.
Omg this is EXACTLY WHAT IM GOING THROUGH! I've been going through this since I was 7 years old and it's only gotten worse I'm 25 now.
Go To Boston, Best Hospital In The United States
Hi, I'm from México but I can understand a bit of English. I have been suffering various alergies like synthoms since I was a kid but somewhere in my childhood the alergies increased and they have been increasing since then, for example, when I was 19 I could eat eggs with no bad reaction, time passed and I became alergic, same goes with many foods and chemicals, the doctors I've asked about this just ignore me, this has been very hard, having pain is not the only way to suffer, I really want to find talk someome like me, yo find what's going on with my body, I haven't met anyone like me yet...
Oh my gosh me too they symptoms they described too(e.g hypermobility, baby teeth that don't fall out, chronic pain,allergies) , plus my allergies got really bad all of sudden and they are very unpredictable. My allergist doesn't seem very concerned with the matter even though my Montelukast has stopped working.
This was great, I've been looking for "how to get a man" for a while now, and I think this has helped. Ever heard of - Kenora Panameron Eradicator - (should be on google have a look ) ? Ive heard some amazing things about it and my buddy got amazing success with it.
@@raygames8712 you guys get paid to post I guess
Check out also for low dopamine in the brain. If you are a Highly Sensitive Person, you already have lower dopamine than others. Where there is low dopamine, there's more activation in mast cells. Treated with dopamine agonist (if you have low dopamine), antihistamines (H1, H2), vitamin D, (a small amount) injection of adrenaline under the skin of your belly. Occasional cortisone. Some also benefit from IV saline infusion, MCAS comes with dysautonomia. (You can also have EDS, if hypermobility is present)
I’m in the process of trying to get diagnosed and the only correlation I could find between frequency of episodes was when I ended up on Claritin on two occasions. On my sixth doctor trying to get the diagnosis but I’m almost certain is Mast Cell Activation. Presently I’m in the hospital with Covid (triple vaxed but I also have an IgG subclass deficiency and asthma) and had an episode while here. The hospitalist was willing to address the issue and I’ve been getting an H1 and H2 antihistamines and it definitely helped. He has also drawn blood the the IL1, IL6, CH50 and Tryptase levels. I live near enough to Boston and can access expert care so hopefully I won’t end being one who it takes 6-7 years to get diagnosed.
Low dopamine can be from high copper
My family has MCAD and Ehlers Danlos Syndrome. The joint problems they describe sound like EDS
Does your skin easier tear? My skin easily rips around my ears and nose and ive been so itchy I even scratched m fave
Excellent Video! Apologies for the intrusion, I am interested in your opinion. Have you heard the talk about - Ganrayden Peerless Gratification (should be on google have a look)? It is a good one of a kind product for eradicating your urticaria without the hard work. Ive heard some incredible things about it and my m8 at very last got astronomical success with it.
Lovely Video! Apologies for the intrusion, I am interested in your opinion. Have you heard the talk about - Ganrayden Peerless Gratification (google it)? It is a smashing one off guide for eradicating your urticaria minus the hard work. Ive heard some unbelievable things about it and my work buddy finally got astronomical success with it.
Lovely Video! Apologies for the intrusion, I am interested in your opinion. Have you heard the talk about - Ganrayden Peerless Gratification (google it)? It is a smashing one off guide for eradicating your urticaria minus the hard work. Ive heard some unbelievable things about it and my work buddy finally got astronomical success with it.
Appreciate Video clip! Apologies for the intrusion, I would appreciate your thoughts. Have you researched - Ganrayden Peerless Gratification (erm, check it on google should be there)? It is a smashing one of a kind guide for eradicating your urticaria minus the normal expense. Ive heard some super things about it and my coo-worker after many years got amazing success with it.
Well this is exactly what I’m
Going through also. Was sent to er two days ago with a mass cell flare! Finally dr’s Need to realize that this is not just allergies!!! I had a skin scratch test and was allergic to the SALINE! The negative that should have no reaction! I’m so glad these dr’s are looking into this ! I feel like I’m educating my own family dr of this, as he is not even educated much on this
It’s very tough finding a doctor that knows of it let alone how to treat it. If you ever go into an ER make sure they know about it before treating you.
I had this issue also. The Dr said the scratch test was all false positives because it's impossible to react to saline.
Same story! 😣😭
Been suffering from little “allergy” nuisances my whole life. After I got Covid in April 2021 my health went severely downhill! Here we are June 2024 and I’m STILL suffering!!
So many people who are suffering with long Covid have exactly this, MCAS!! It has definitely been under diagnosed, and now Dr’s and specialists are starting to realize I think just how prevalent it is. A mast cell specialist sure makes the criteria difficult to come in and be seen tho! I am having to jump through hoops and stupid BS just to get an appointment scheduled! I’ve had a lot of testing over the past few years which should be enough! Went to a Hematologist and had over $1000 worth of blood work done not to mention all the bloodwork I had done in the years prior to that. All my allergy markers are elevated, Triptase and IGE included. Now they want me to do a 24 hour urine test before they, “then decide if an appointment is necessary”…. ?!!!? REALLY?! So you would let me continue to suffer?! I even reached out to the Mayo Clinic to see if they were an option and was told by the lady who called me back that between all their facilities they don’t have anyone who specializes in MCAS. WTH?!!!! How frustrating is this!?! I know this video is 8 years old and they have come up with some treatments that are available now. I hope I get help and anyone else suffering NEEDLESSLY! ❤️❤️
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!)
I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS).
I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without.
I’m starting low dose naltrexone, Benadryl twice a day and aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more and improved less pain, increased energy and problems in general moving forward. (LDN is known to improve inflammation and help your immune system fight back).
God bless and I wish you all the best in your pursuit to find answers.
Also related to Asperger's ADHD add.ime hypomobility stretchy skin in elbows heal with keyloids I had a cracky neck as a kid.we suffer also with pyroles and leaks ime unsure what is causing my pain if it's the atlas and atlas Dr said it was my jaw.had CFS pots now it's more fybromyalgia my allergies lot better how are you
Yes understanding that histime problem has helped so much.
I have systematic mastocytosis I take sodium cromolyn and mix it with water, lots of zertec (generic works too) and montelkaust to help with breathing and head pains. Try getting your doctors to do blood test, bone density test, bone marrow test, and a 48 hour urine test. After that you should know if you have a mast cell disorder. Stay strong guys we will be ok 😊
not sure if you are aware, but medical marijuana is a Mast Cell stabilizer. It is a true life saver for me. I have MCAS, EDS, Fibro, etc, blah, blah... hope this helps someone.
I hate taking those meds all the time
@@jdragyn720 HELP. Marijuana has always caused my heart (I have POTS) to RACE even MORE which is very uncomfortable. Which type of MJ would help me???
@@bubblesbubbles3415 I had to do trial and error to find what worked. I strongly recommend trying Vape- it doesn't stink quite as much to me, and has a quick response. that said I use both Sativa and Indica, and just recently started using edibles. Go to a dispensary and ask questions- most of the people are totally understanding, willing to help and are very non judgmental. I took 2 1/2 to 3 years to find what I use now, but my pain is 1-2 instead of off the charts. I am so close to being normally active, it is scary. I wish you luck, and hope that you can find what works.
@@jdragyn720 Thank you so much!
The hypermobility issue will pretty much solidify that you have Ehlers Danlos Syndrome. EDS is a collagen disorder, mast cells make up the extracellular matrix which is a bunch of collagen. Basic science says cells make up tissue which makes up organs, etc etc. So of course a connective tissue disorder will have connective tissue cells act up. So many people with Ehlers Danlos Syndrome are struggling to cope with all these symptoms because doctors keep recategorizing syndromes and disorders that tell the same story! I shouldn't have to spend money and time to go back and forth with doctors to find out I have EDS pots and mcads because some doctors think by diagnosing you with EDS it goes without saying you have pots and mcads, and other doctors think you have to be individually diagnosed. And then all the doctors argue over what to call your condition.
There are other disorders that have hypermoblity
Hi lil what are your symptoms?
@@Cw-wi6uj if you look up the beighton score scale that is what mayo clinic used to diagnose me with ehlers danlos. For pots when I stand up my blood drops to my feet so my feet turn purple and I'll get super light headed sometimes close to passing out. My heart will randomly go into TAC even while resting. Once I had a heart rate shoot up to 185 and I was just sitting. For mast cell it's a lot of allergic reactions to the most random things. Breakouts, facial flushing, brain fog, tongue swelling. It's different for everyone and not everyone reacts to the same thing. To diagnose pots you'll do what's called the poor man's tilt table test and measure your orthostatic vitals with a blood pressure cuff and heart rate monitor. If your HR changes by I think 30bpm when you stand up that's a big sign of pots. For mast cell they took my blood and tested tryptase levels and mine were over 11 which is a direct confirmation of mast cell. I had to go to mayo clinic in arizona a bunch of times to help cobble me back together again. For my pots diagnosis I had to see an autonomic nervous system neurologist. For mast cell it was an immunologist. Eds type 3 was the genetics doctor. After a couple years I've been able to get out and about but it's been a long road and you definitely need to adjust your lifestyle. Sorry for the novel I hope this helps you!
@@lilruca3160 for some reason TH-cam won't let me reply to you
@@lilruca3160 thank you for your in depth reply I tried to type you a long reply back but for some reason TH-cam won't let me post it.
Next week I go to Germany for a repeat treatment I had 2 years ago check out Dana white UFC he talks about the treatment in dusseldorf Germany. I am sorry to hear how bad you have had it and Glad to hear things are better for you maybe never perfect but better 🙏
I'm going through the same thing ... My grandmother had it too.. I can't stay in the sun heat that long neither can I stay in the cold
Sounds like the family with the joint issues and inherited MCAS have Ehlers-Danlos.
Hows everyone doing.I have MAST CELL ACTIVATION SYNDROME. I have had everything. It sucks it has really consumed me.Its hard tl plan anything because im sick all the time.Its killed my marriage. You know how i feel, to all my people with this disease.
What do you feel? I think I have this, can we talk? I've several alergies that won't stop increasing, every year I literally get like 5 new alergies and doctors won't listen to me!
Wrecks your life😢
I'm french and noone known this syndrome, but I suffer it from my birth, and now at 40, I know, you must have antihistaminiques H1 and H2 and don't eat your trigger, maybe Sun or heat variation and sport. Stay connect if you want, but m'y english is not so good. Keep going
yes but which came first is the question....
Excellent to know they're working on it, and we finally have validation.
I have this syndrome and have been using quercetin twice a day for this past 3 months and can now eat foods that I cut out of my diet. Recently I did have a histamine attack and it lasted for a few days. The rage that comes up in me makes me so miserable that I can’t be around people. Oh ya I am 68 going on 16 and I have now increased to 3 per day.
I was diagnosed with mass cell activation disorder last month, I’m receiving treatment and I’m finally starting to feel better, the internal and external hives are awful , I’ve had hives the size of baseballs in diameter all over my body , I have no family history of this illness either
What is your treatment?
Dana Shannon a cocktail of medications, including heartburn, mast cell stabilizer and antihistamine medications.
Dana Shannon
I have to take two Epsom salt baths a day. But the taste sometimes is in your throat . If you used to much. But I feel so much better. I just wanna stop the baths but it seems like this is a rare thing.
How did they diagnose it.
@@metanoiabooks3729 special blood and urine tests , I don’t know what the tests were called but I remember they had to put my blood on ice as soon as they got it into the vials , it was very odd to see the blood get put on ice immediately and the urine test I had to do it was a 24 hour urine collection thing and I had to get it back to the lab as soon as possible once I finished the collection because they had to send it to a specialist lab out of state for the results.
I wish I could find a doctor to diagnose me after all of these yrs of similar issues. I suffer with hand & feet redness/heat/swelling everyday after I eat and I get severe asthma attacks. My doctor has tested my blood for nearly everything but the results keep coming back within normal ranges. I have terrible IBS and skin rashes on my arms/neck/legs too. I was diagnosed with severe food allergies but avoidance diets haven't helped reduce my symptoms. Since I started experiencing these issues, I went from 138lbs down to 107lbs from not being able to eat in the past couple of years. My doctor finally told me last week that he is out of options and that these symptoms are probably just anxiety/stress related. I find it hard to believe that these physical food-related symptoms are just manifested in my head all these years. I was adopted from South Korea, so I don't have any knowledge of my own family medical history. It has become a living nightmare, but I am hopeful that this may be something similar to what I am experiencing.
Hi A Jens, maby you can ask your doctor to give you antihistamine. My daughter is 13 years young and she had suffered from severe allergic reaction almost all her life. Nobody could find what she had, But I never gave up and in the beginning of this year I found it. It was food related only not in a known form. You see food releases all types of allergic substances for in stand a green banana is full of starch a ripe banana contains more sugar. This is an simple example. Now thing of every food you eat releases some type of histamine, like if you prepare food in the morning and eat it in the evening you have to re head that food instantly there are other substances being released. My daughter can not eat old food even when it's prepared in the morning. She can not eat a list of things: spices, tomato's , spinach, mango, avocado, old food, food that stands open for a period of time. THe list goes on probably everything she eat's and is known to eat releases a form of histamine. To make a long long longg story short. Al these food keep building op and building up and suddenly all at ones some type of triggers and she becomes very ill. It's a combination of things, food, warmt, stress, sleep, and skin problems. Every month she would get sick sometimes more than 7 times a month with allergic outbreaks of 8 hours long. ANd know to a high doses of antihistamine she only is very tired because the substances keep rambling in her body and her skin. But for over 7 months no severe outbreaks. I am so great full ma by it is of use for you and this simple thing can help you to. Food avoidance have no use because probably you have a build up allergy. What could mean that yes you have severe allergy but it does not go away if you avoid that food it was the same for my daughter. She eat's everything now but i have to say when she eats fast food she is very tired and gets skin rashes especially her face and arms.God bless I so hope this is the case for you.
Nat Halie Thank you! I will ask my Dr about this! I've started avoiding 'high histamine' foods and carbs. I get less hot/swollen hands and feet, but when I cheat the reactions come on immediately. Thanks again for your msg, I will def to increase anti histamines if OK'd by my doc.
Have you seen a genetic Dr? Things like Familial Mediterranean Fever have redness and swelling at joints usually in the ankles and wrists, a lot of allergies to foods and environmental agents and some people have fevers but many don't.
Alex Jensen Look up Dr.Afrin. He used to be in Minnesota and is now in NY now. Amazing Doc who took two hours with me and came up with both a diagnosis and comprehensive treatment plan to take back to my local doctors. Worth the trip to see him
Alex Schroetlin k8
Got some lab results in. My ANA and my DNA single strand both was positive. My inflammation marker was off too. My doctor is sending me to a specialist to find out what autoimmune disorder it is, if it is one. I have almost every symptom of Mast Cell. It’s so hard trying to find out why I feel bad 😞 My tryptase came back as 10.8 so I didn’t know if that’s good or bad? I never had allergies until a few years ago. I can’t hardly go outside without welping up, having a rash or something. Asma has also occurred, stomach issues, anxiety, bone pain. Some doctors in the past said everything looked good until now. My stomach doctor mentioned Mast Cell and it really makes sense with all my symptoms.
Try to eat really clean
Ehlers-Danlos Syndrome
What kind of doctor do you see?
They should test for lyme disease too. Sometimes this can cause excessive mast cells and high histamine levels.
Those skin findings at 0:34 look exactly like mine :O I've had problems with anaphylaxis and all my IgE tests are negative and still I can't eat a lot of food items. Several Dr:s have put it down to histamine intolerance but to my knowledge there's no histamine in carrots or apples.
same for me. I can't eat anything now I basically try to not eat as much as possible cuz everytime I do I havew an inflammatory reationn with burning skin rapid heart rate nerve pain and all sorts of other crazy symptoms. Also When I eat certian foods or smell chemicals like gasoline car exhaust, perfumes ect I can feel my throat start to constrict and have trouble breathing.
Same to me also the same symptoms and only two foods can be eaten
@@vannyvanztell me please which food you eat i want trying
beef and chicken
I cooked very well with iodize salt onlyin air fryer
I have MCAS but not EDsyndrome...it’s taken 20 years (after having a ruptured appendix and peritonitis in ‘98) to get CLOSE to a diagnosis....thankful for my RNP who looked at my blotchy purple legs and heard my complaints of burning sensations with extreme fatigue...SHE figured out that it was MAST cell related and she put me on Montelukast, and within 2 days my never ending rash/hives (that I had been living with for months at a time) 2 days...and it disappeared completely! I have since stared a more complex protocol, which has been helpful...but...I’m still finding weird and painful symptoms.
Like most people with rare/complex health issues I’m desperate to feel better- I can barely function and I have almost zero energy to devote to anything but the basics. A formerly super ambitious hardworking artist, it’s becoming rare for me to even have energy to create.
I’m eager to hear if anyone knows of any clinic or Drs who treat MCAS in the US or (my husband’s country) Italy... TIA
some people have rebound effects when they try to get off that drug. There's a FB group about it. good luck to you.
I'm in the same case, I though I died from 4 years
Well with approx 30-50% now experiencing this as long haulers IT IS TIME TO REALIZE MUCH MORE COMMON AND TEACH MANAGEMENT BROADLY TO PROVIDERS!
AMEN THANK YOU!!!! Exactly what I had replied to someone else! All these people coming out after Covid with this, myself included! I had to pay attention to my symptoms and figure it out for myself. Now these clinics that actually treat MCAS, want you to jump through hoops and have all this testing done prior to them even being able to schedule you an appointment?!!! WTH?!!! 🤬
Has anyone had activation after trauma? I have lots of inflammation already from car wreck, then fell and got a compression fracture. The next day I developed uncontrolled asthma and was hospitalized a few days later.
Lisa Wilson yes I have had it due to trauma.
yes, I had chemical accident and got burned all over my body and went through a lot of mental trauma from the event and started to develop what i beleive is mcas. Now I have chronic pain and have allergic like reactions to chemicals foods stress ect. i tried to tell drs and have seen about 20 of them and none of them even knows what msac is and just keep telling me it's in my head, but now I am seeing a naturpath who knows about MCAS and she thinks I might have it.
All started about 6 months after I got covid. Also lots of relentless stressful stuff for about 2 years. Anti histamine meds and diets don’t seem to do sh1t tbh. Hundreds of bucks down and no closer to a solution. ☹️
I have mast cell activation syndrome. Diagnosed at age sixty! Î have almost every disease in the book that goes with it, asthma, allergies, ehlers danlos, dercums, chiari, chronic drippy/stuffy nose (even with meds), all over itchiness, dishydrotic eczema (not dishydrosis), myofascial pain syndrome, all of the neurological ones I've read, plus more that I can't remember just now. Get it?! Neuro includes memory?! Never mind. But there really are things I read that I recognised and can't recall !! Because I have migraines and chronic kidney disease and polymyalgia rheumatica and giant cell arteritis and fat liver (I wouldn't want to be called fatty, but just fat, so that's how my liver will have it) and those aren't a part of all this, I don't think, I do think I have a lot to learn. Seems I never stop saying that!
I'm diagnosed with Ehlers Danlos Syndrome and mast cell activation syndrome as well as postural orthostatic tachycardia syndrome. This looks exactly like my skin! I currently take cromolyn sodium oral, montelukast, ranitidine and loratadine. I avoid all my allergens food wise but still suffering terribly. At least the deep bone pain from MCAS has subsided on cromolyn.
How were you diagnosed? I'm feeling it's possible in me, but don't have typical flexibility tests to show it. Feel so sick every day, gets better later in day but never goes away.
@@jackiesicilian5720 any pain?
I've had these "invisible" problems all my life! Doctors act like they'll help, but no one does. I was finally diagnosed with EDS 2 years ago. I'm 59 and the pain has been chronic for over 2 decades. I hope you figure something out. I wish I could be part of your trials. Good luck to you!
This happened to me…I thought I had food poisoning ended up with hives for 2 1/2 months off and on , tachycardia, severe diarrhea, gastritis and esophagitis, headaches, flushing and itching rashes …horrible my colonoscopy showed eosinophilic colitis and mast cell activation syndrome showing greater that 30 mast cells on high powered microscopic examination 🧐 and yeah good luck getting treatment
What do you do for that ?
I have a mold illness and MCAD. Can we help each other in any way?
They related on genetics because they can't find the cause . Genetics can be a predisposition to develop certains symptoms and some specifics conditions . Toxicity of all nature should be a part of investigation to find the root of illness and so epigenetics too
Because it's a genetic mutation caused by various factors, the n1 are micotoxins released by mold
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!)
I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. Not the only one in my family that can, “write on their own skin”. (Another tell-tell sign of MCAS).
I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without.
I’m starting low dose naltrexone, aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more improved less pain, increased energy and problems in general moving forward.
Thank you.
This is EXACTLY what happened to me a couple of years ago and I am 59 next week!! I thought I contacted food poisoning from a lobster and ended up in the ER - I felt like I was going to die for sure. Also, I was diagnosed years ago with Osteoarthritis, I had a hysterectomy at the age of 31 due to Endometriosis and in Jr. High I broke out in a rash from some medication. A year after the lobster incident, I had a skin reaction to some chemicals on my hair, Doctor did a skin biopsy a month later because of a rash that wouldn't go away and I found out that I have Telangietasia Eruptiva Macularis Perstans, a rare form of Mast Cell disease. 😕
Thank You for the information!
Yeah this is like a crazy syndrome in the medical community I have literally been told to stop thinking about my headaches and they will go away basically saying that it's all in my head. It's all in my head all right.
Ughhhh I can't stand a lot of these doctors
@@bubblesbubbles3415 if you have headaches, work on repairing the gut.
@@gregburgess6884 How?
@@bubblesbubbles3415 well you can start to research online about how to repair the gut lining. There is a product called ion, you can purchase it online it is a liquid that helps to repair the lining of the gut. Also by ingesting things like gelatin powder and I'm not talking about jello powder it's actual gelatin powder. It's made from the bones of animals. Also a good one is bone broth soup. Dr ax if you are familiar with him. He talks about healing the gut all the time he's on TH-cam you can look him up. Basically what has been discovered is that the gut has a major connection to inflammation and overall health of the body. By eating processed foods eating out eating a lot of bread or sugars not even a lot really but just basically are high processed food diets which is most everything on the market today unless you grew it in your own garden or raised the animal yourself it's been processed one way or another. They are finding that it is destroying the lining of the gut which basically breaks down the immune system and as I said causes allergic reactions inflammation and muscles and joints. So if you're having a lot of fatigue or pain in your muscles and joints or experiencing headaches this is where you should go as they say listen to your gut. And if you are having these symptoms your gut is trying to tell you something. That's where you start is healing with the gut then it is eating the purest foods fruits vegetables if you are a meat eater the purest form of meats that you can buy and drinking lots of clean water so on and so forth.
@@gregburgess6884 I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!)
I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS).
I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without.
I’m starting low dose naltrexone, aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more improved less pain, increased energy and problems in general moving forward.
God bless and I wish you all the best in your pursuit to find answers!
how do you sign up to get into this program!!??
Have you guys had anything relating to Chronic Idiopathic Urticaria in relation to Mast Cell Activation Syndrome?
This can be diagnosed after several serious reactions or injuries to pharmaceuticals. Often food and chemical allergies are present or develop. So much is left out of this video! Many symptoms involved and can take MANY years to diagnose. Not an easy diagnosis at all.
I agree. It’s a good video, but they left quite a bit. The symptom list doesn’t even cover it. It’s so varied too! Not everyone is the same as well. It’s easy to diagnose with a series of serum tryptase levels…but most doctors don’t even know about mast cell yet. So it’s not on their radar when a patient tells them their symptoms.
I hope this helps somebody. I suffer from several inflammatory conditions, including allergic rhinitis and Graves Disease. A few years ago I tried out the Buteyko breathing method, which increases your blood's carbon dioxide levels. This helped me a huge amount. New research now shows that raising CO2 levels inhibits mast cell degradation, and so reduces inflammatory attacks.
My new surgeon thinks I have this! She doesn't know what to do so she's trying to get me set up with an immunologist. Fingers crossed I finally get answers after 10 years of doctors telling me I'm fine 🤞🤞
That's good! I wish you luck!! I hope it all helps you. It pretty much seems like NIAID (name of channel) gave up on us.
YES!!! I have had most of these symptoms for 62 years, but have also been permanently disabled on Medicaid and SSI since I was 30 - finding anyone who'll do the proper tests for this or other "autoimmune issues" is impossible.
I got sunburned severely last July, ( used to be the one of 6 siblings who NEVER burned until then), and have been suffering every moment since then, with head to toe itching and burning, rashes, red skin still on lower legs, ankles and knees without any relief. Would be great if you guys could tell the practitioners up in Oscoda, Mi that this is unconscionable. I've lost 20 lbs I didn't need to lose since July, my guts are constantly boiling, and these people are more worried about high cholesterol, which I believe is elevated because it's trying to repair damaged tissue.
Have you tried a naturopathic doctor ?
@@canadianhaitian Medicaid won't cover that, and that's all you get when you end up disabled at 29 years old.
@@MacchiatoSwirlGirl Thank you 😊
@@MacchiatoSwirlGirl Social Security told me that because I hadn't worked enough quarters before ending up having to retire that I'd never get Medicare or a regular disability check. I'm 65 now and still have neither one.
@@NancyBeegle I hear you ♥
Great. So no cure…
Does this mean you’re on a restricted diet the rest of your life?! I thought I might have histamine intolerance. Now I’m thinking it could be MCAS.
Finally seeing a Naturopath in a few days. I’ve seen countless specialists and had numerous procedures that tell me nothing. So discouraging!
Is this study still ongoing?
No specific therapies?
What about all teh Mast Cell STabilizer drugs that they are using now?
No --- Sodium Cromolyn Oral, Ketotifen Oral (Alll of these are mast cell stabilizers) and are the first line treatmetn for Mast CEll ACtivation Disorders
Also, Antihistimines like Benadryl, Ceterizine, are a must --- etc..
+Katie Hobson maybe this year, new molecule research results to be published (tests have been positive)
i have tired sodim cromolyn , ketotifen but it doesnt work .. no mast cell were stabilized. i am suffering from cutaneous mystocytosis since i was 16. i am tried of these things. plz help me what can do to cure thsese diseases//
Maybe fodmap-diet can help you. My son feels better with it, he has EDS and many Mastcellproblems. Natriumcromoglicat was good, too but didn´t heal. Vitamin D 3 Highdosis helps sometimes. We need it all the time. Good luck!
I was diagnosed with EDS last month. Also, my IGG levels was 4976. Three of my children also likely have EDS. We all suffer from all of the symptoms in this video. My allergist thinks I have mast cell disorder. I go for blood work tomorrow morning. Any advice? My doctors are looking to my own research to navigate through the next steps 😔 I'm suffering. I need help
Feel free to reach out to me. I'm 12, and I suffer from sever depression, and anxiety, and regret. Please be my pen-pal! Tobyjuno@mail.com....😃
Can this be a result of prescription drugs such as interferon? Eating causes me to have respiratory type allergic symptoms in combination with IBS symptoms and all since interferon.
My symptoms are that I feel hypoglycemic and I get brain fog. If I eat low carb and low histamine I don't feel as hypoglycemic and I don't get brain fog. I've had fatigue for decades.
I’m still trying to get my diagnosis as the doctors do believe that I have it even though my tryptase was normal
Same
Does palmitoylethanolamide help with this?
Wasn't genetic in my case. Caused by infection.
Same! I got H. Pylori
Can you heal it?
Well done, Patricia and Fabio! Thank you for your activism!
Genetic problems included are eating McDumpsters and high fructose slob syrup.
Solution for high tryptase?
Try to find your triggers if you had mcas
1:30
Healing the gut is crutial😊 gaps diet
Sir, iam singh from India , my age is 60years.Recently I developed allergy only on sole of feet and palms and also on dorsal of the both hand and feets only. Allergy is so severe and beyond control. I am repeatedly episodes of stress and taking tab pexedip. But recent allergy / pruritis is very severe. Kindy suggest what could be.
High triptase ?
What😱
Rodriguez Kenneth Thompson Ronald Perez Mary