I'm so grateful for all of these educational interviews on MCAS, and ive listened to you, Dr Weinstock, on the Mast Cells Matter podcasts as well. You've helped me get diagnosed with something I've dealt with my entire life, since infancy, and I'm newly retired. I'm beyond grateful. A million thanks from me. You've both made your lives count.
Please ask Dr Weinstock to add Hypermobility Spectrum Disorder as well as EDS (Ehlers Danlos Syndrome) to the future videos. EDS and HSD are very similar connective tissue disorders...for which MCAS is found in both groups of patients. Dr. anne Maitland specifically notes HSD and EDS as being a commonality in the people she found MCAS in. It is important not to leave out the Hypermobility Spectrum Disorder.
I have mcas I have over 40 intolerance and when they are triggered my body go’s out of whack big time in every way . I know how to help myself, unfortunately not many gp’s understand mcas but it’s very simple to understand especially if you live in the body of the person . It’s the peoples stories you need to learn from . I’ve worked on front line of disease for 30 plus years now and I honestly think mcas is so undiagnosed, I think lots of people are out there with it . I went to an allergist who helped figure things out for me .
Is MCAS a recognized diagnosis code? I went to allergist and asked about MCAS...they denied me that but just said I was sensitive to chemicals. Multiple Chemical Sensitivities is not a recognized diagnosis code (no less debilitating)...but the only diagnosis we can give us is chronic fatigue syndrome. Most of my drs dont even believe in chemical sensitivity....so many eye ball rolls. Researchers who want to do medical record research...will not get an accurate idea of how many ppl are actually ill. I keep telling drs my mast cells over-react to the chemicals and I just get eye ball rolls. (I have Hypermobility Spectrum Disorder, the step sister of EDS...in the same family...until I insisted that I see a specialist to verify if I dont have it (or what exactly I have), I had tons of comorbidities that all EDS patients seem to have. If MCAS could have a subset diagnosis to include those of us who they refused to diagnose with MCAS....we could at least be lumped into the literature studies.
@@maryr7593I get neurological impairment from MCAS flares which was triggered after I had Covid. I’ve had much better luck with long covid being recognized and appreciated as a disability. MCAS basically falls through the cracks unless you’re working with an MD who is also a researcher or a PHD who is up to date on MCAS studies. Everyone else is out of touch.
@@MichaelMerritt agreed that it falls through the cracks but also it has just been recognized as a disease in 2016. (Learned later after I posted comment.) So little recognized by medical community. I never had covid. My 'chemical sensitivity' makes me live like a hermit. Yet I'm still triggered by the delivered packages from stores...cereal boxes that smell like perfume. It seems as though the cardboard soaks in all the smells from the stores. I have seen that US disability means you have to have less than $2000 to your name. Friends on disability have to show their bank accts so the govt can see the cash flow. Everybody is denied for years until you hire a lawyer. Plus drs statements of disability. Interesting that long covid is a recognized disease just a few yrs after the pandemic's 'ending'...though I have seen countless YT channels saying ppl are still getting covid and so the possibility is there to get long covid after an exposure. Thanks for the info!
@@timcepin3386 my sinuses are triggered with anything scented...natural or manufactured. I was working in a place where they used plugin air fresheners in the winter time because the office building windows did not offer. I would have what felt like a sinus infection for 8 months. CT scans said no infection...inflammation yes but no infection. At the time antihistamines nor decongestants worked at all. I was also developing migraines that lasted for days. I even had the face pain as one gets during sinus infection and also...the 'it hurts to try to think' pain or the 'I can't think' feeling when you are so congested. The allergy drs said that I needed to stay away from the scents and that would be the way the congestion would go away. I had to try to make an ADA accommodation request (americans with disabilities) such that people not use scented products in shared office/public areas. The office staff thought this meant that if I wasnt physically present in the office, they could still use the air fresheners. Unfortunately it doesn't work like this. The air freshener molecules stay in the air and literally stick to every surface they come in contact with...like drapes, carpeting, upholstery, wood, cardboard, clothes, etc. (very similar to how cigarette smoke gets into every surface in a smokers home or car...including their hair, skin, etc). There are many mcs fb grps that give support in this regard. It was a struggle in the workplace. Research has said toxins are in scented products like perfumes, air fresheners, etc...everyone is being exposed to toxins...so the same rules that brought no smoking rules...should also cover the same for scented products. Whennot exposed to scented anything, I don't have a problem. But I quite literally live like a hermit since I can't go out in public without being exposed to other's scents including scented hand sanitizers, scented products in public restrooms including automagic air fresheners that hang on the wall above the toilets, motion scented...so you end up being covered with air freshener chemicals. If I can't hold my breath long enough to use a public restroom....I will jam a paper towel into the machine's nozzle so that it sprays into the paper towel. It is much better for me if the scent chemical molecules do not get on my clothes, hair, etc...then it's not in my car and doesnt go home with. If you haven't figured out what causes the sinuses to flair, try to take out all the scented laundry detergents, dryer sheets, dish soap, everything with a scent...replace with fragrance free and unscented products. Baking soda and vinegar make very good cleaning products if you can stand the smell of vinegar.
Nice to hear someone is going to make a film about the triad! Unfortunately lots of people have it. I think I do. I was diagnosed with EDS (hEDS I think but I have not seen the geneticist yet) and each time I eat the "wrong" thing I get very Potsy. So the allergies can give me pots. And unfortunatly I react to a ton of stuff including all corn derivitives. A carnivore type diet of grass fed meat works the best in my case. And most places I cannot go due to smells.
Have you joined any of the EDS/hypermobility spectrum disorder fb grps? MCAS or multiple chemical sensitivity is seen in many connective tissue disorders like EDS (Ehlers Danlos Syndrome). If you think you have the hypermobile type a geneticist will not help. They have not found the gene associated with the hypermobile type. If you suspect EDS, go to your primary care and find out who in your area (covered by your insurance) who is the specialist that diagnoses EDS. The primary dr might doubt you...has happened too many times...because it is thought to be rare. Instead it is rarely diagnosed. If we as patients can get properly diagnosed, join the registry database through Ehlers Danlos Society, researchers who write grants for research...can state the accurate amount of ppl that have EDS/HSD and describe what they are researching. Being a "rare disease" does not normally get the research funds for possible treatments. Lots of EDS fb grps but also lots of MCS and MCAS support groups. Important to share information. Lots of EDS vids about a variety of the comorbidities and how to manage them.
GREAT GRATITUDE, TWO SUPER HEROS, SHARING IS CARING, WILL SUGGEST TO ANY PATIENT TO HAVE THEIR RX. SENT TO YOU, STAYMORESTRONGER, LARRY KING, LOVE, PEACE & NURSE. VENICE, FL, ME', SHARING WITH OTHERS. 😀
Covid seemed to give me this type of a reaction. I’m 80% better but I really want to get rid of last 20% of these symptoms. I still can’t eat eggs or soy.
@@aboveaverage4296 mainly carnivore diet and now a modified carnivore diet. That brought me a lot of healing but wasn’t easy. Some probiotics, homemade kefir, sauerkraut has helped. Sauna, exercise, and sunlight help a lot. Grounding too.
If a skin sore is your only symptom, it is more likely a dermatology issue or your skin is reacting to product it doesn't like...like laundry soap, soap in general. MCAS is a multi-system issue...so you have issues in your respiratory system, your gastrointestinal system, you might get migraines, you might have joint pain...by whatever you are smelling or ingesting...or getting into the body by any open surface..skin, nose, eyes, ears, rectum, vagina. Wood smoke, air pollution, gas fumes (natural gas or from filling up your car), paint vocs, housing insulation, formaldehyde in most everyday products especially fire retardants
I'm so grateful for all of these educational interviews on MCAS, and ive listened to you, Dr Weinstock, on the Mast Cells Matter podcasts as well. You've helped me get diagnosed with something I've dealt with my entire life, since infancy, and I'm newly retired. I'm beyond grateful. A million thanks from me. You've both made your lives count.
CONGRESS NEEDS TO FUND RESEARCH into mast cells!!!
Please ask Dr Weinstock to add Hypermobility Spectrum Disorder as well as EDS (Ehlers Danlos Syndrome) to the future videos. EDS and HSD are very similar connective tissue disorders...for which MCAS is found in both groups of patients. Dr. anne Maitland specifically notes HSD and EDS as being a commonality in the people she found MCAS in. It is important not to leave out the Hypermobility Spectrum Disorder.
I have mcas I have over 40 intolerance and when they are triggered my body go’s out of whack big time in every way . I know how to help myself, unfortunately not many gp’s understand mcas but it’s very simple to understand especially if you live in the body of the person .
It’s the peoples stories you need to learn from .
I’ve worked on front line of disease for 30 plus years now and I honestly think mcas is so undiagnosed, I think lots of people are out there with it .
I went to an allergist who helped figure things out for me .
Is MCAS a recognized diagnosis code? I went to allergist and asked about MCAS...they denied me that but just said I was sensitive to chemicals. Multiple Chemical Sensitivities is not a recognized diagnosis code (no less debilitating)...but the only diagnosis we can give us is chronic fatigue syndrome. Most of my drs dont even believe in chemical sensitivity....so many eye ball rolls. Researchers who want to do medical record research...will not get an accurate idea of how many ppl are actually ill. I keep telling drs my mast cells over-react to the chemicals and I just get eye ball rolls. (I have Hypermobility Spectrum Disorder, the step sister of EDS...in the same family...until I insisted that I see a specialist to verify if I dont have it (or what exactly I have), I had tons of comorbidities that all EDS patients seem to have. If MCAS could have a subset diagnosis to include those of us who they refused to diagnose with MCAS....we could at least be lumped into the literature studies.
@@maryr7593I get neurological impairment from MCAS flares which was triggered after I had Covid. I’ve had much better luck with long covid being recognized and appreciated as a disability. MCAS basically falls through the cracks unless you’re working with an MD who is also a researcher or a PHD who is up to date on MCAS studies. Everyone else is out of touch.
@@MichaelMerritt agreed that it falls through the cracks but also it has just been recognized as a disease in 2016. (Learned later after I posted comment.) So little recognized by medical community. I never had covid. My 'chemical sensitivity' makes me live like a hermit. Yet I'm still triggered by the delivered packages from stores...cereal boxes that smell like perfume. It seems as though the cardboard soaks in all the smells from the stores.
I have seen that US disability means you have to have less than $2000 to your name. Friends on disability have to show their bank accts so the govt can see the cash flow. Everybody is denied for years until you hire a lawyer. Plus drs statements of disability.
Interesting that long covid is a recognized disease just a few yrs after the pandemic's 'ending'...though I have seen countless YT channels saying ppl are still getting covid and so the possibility is there to get long covid after an exposure. Thanks for the info!
How are your sinuses?
@@timcepin3386 my sinuses are triggered with anything scented...natural or manufactured. I was working in a place where they used plugin air fresheners in the winter time because the office building windows did not offer. I would have what felt like a sinus infection for 8 months. CT scans said no infection...inflammation yes but no infection. At the time antihistamines nor decongestants worked at all. I was also developing migraines that lasted for days. I even had the face pain as one gets during sinus infection and also...the 'it hurts to try to think' pain or the 'I can't think' feeling when you are so congested. The allergy drs said that I needed to stay away from the scents and that would be the way the congestion would go away. I had to try to make an ADA accommodation request (americans with disabilities) such that people not use scented products in shared office/public areas. The office staff thought this meant that if I wasnt physically present in the office, they could still use the air fresheners. Unfortunately it doesn't work like this. The air freshener molecules stay in the air and literally stick to every surface they come in contact with...like drapes, carpeting, upholstery, wood, cardboard, clothes, etc. (very similar to how cigarette smoke gets into every surface in a smokers home or car...including their hair, skin, etc).
There are many mcs fb grps that give support in this regard. It was a struggle in the workplace. Research has said toxins are in scented products like perfumes, air fresheners, etc...everyone is being exposed to toxins...so the same rules that brought no smoking rules...should also cover the same for scented products. Whennot exposed to scented anything, I don't have a problem. But I quite literally live like a hermit since I can't go out in public without being exposed to other's scents including scented hand sanitizers, scented products in public restrooms including automagic air fresheners that hang on the wall above the toilets, motion scented...so you end up being covered with air freshener chemicals. If I can't hold my breath long enough to use a public restroom....I will jam a paper towel into the machine's nozzle so that it sprays into the paper towel. It is much better for me if the scent chemical molecules do not get on my clothes, hair, etc...then it's not in my car and doesnt go home with.
If you haven't figured out what causes the sinuses to flair, try to take out all the scented laundry detergents, dryer sheets, dish soap, everything with a scent...replace with fragrance free and unscented products. Baking soda and vinegar make very good cleaning products if you can stand the smell of vinegar.
Nice to hear someone is going to make a film about the triad! Unfortunately lots of people have it. I think I do. I was diagnosed with EDS (hEDS I think but I have not seen the geneticist yet) and each time I eat the "wrong" thing I get very Potsy. So the allergies can give me pots. And unfortunatly I react to a ton of stuff including all corn derivitives.
A carnivore type diet of grass fed meat works the best in my case. And most places I cannot go due to smells.
Have you joined any of the EDS/hypermobility spectrum disorder fb grps? MCAS or multiple chemical sensitivity is seen in many connective tissue disorders like EDS (Ehlers Danlos Syndrome). If you think you have the hypermobile type a geneticist will not help. They have not found the gene associated with the hypermobile type. If you suspect EDS, go to your primary care and find out who in your area (covered by your insurance) who is the specialist that diagnoses EDS. The primary dr might doubt you...has happened too many times...because it is thought to be rare. Instead it is rarely diagnosed. If we as patients can get properly diagnosed, join the registry database through Ehlers Danlos Society, researchers who write grants for research...can state the accurate amount of ppl that have EDS/HSD and describe what they are researching. Being a "rare disease" does not normally get the research funds for possible treatments. Lots of EDS fb grps but also lots of MCS and MCAS support groups. Important to share information. Lots of EDS vids about a variety of the comorbidities and how to manage them.
GREAT GRATITUDE, TWO SUPER HEROS, SHARING IS CARING, WILL SUGGEST TO ANY PATIENT TO HAVE THEIR RX. SENT TO YOU, STAYMORESTRONGER, LARRY KING, LOVE, PEACE & NURSE. VENICE, FL, ME', SHARING WITH OTHERS. 😀
Awesome interview!!!!
I am definitely going to re-watch a few times.
Covid seemed to give me this type of a reaction. I’m 80% better but I really want to get rid of last 20% of these symptoms. I still can’t eat eggs or soy.
Hi there! Can you share what supplements/ drugs do you use to make you feel better? Ive started with Quercetin and H2 blockers recently
@@aboveaverage4296 mainly carnivore diet and now a modified carnivore diet. That brought me a lot of healing but wasn’t easy. Some probiotics, homemade kefir, sauerkraut has helped. Sauna, exercise, and sunlight help a lot. Grounding too.
This was very helpful, thank you.
Thank you 😊
Doctor how can I be apart or your research group?
Fillers are crazy bothering me these days, now that I've eliminated so many other things! Corn closes my throat.
Can mcas cause skin sores
If a skin sore is your only symptom, it is more likely a dermatology issue or your skin is reacting to product it doesn't like...like laundry soap, soap in general. MCAS is a multi-system issue...so you have issues in your respiratory system, your gastrointestinal system, you might get migraines, you might have joint pain...by whatever you are smelling or ingesting...or getting into the body by any open surface..skin, nose, eyes, ears, rectum, vagina. Wood smoke, air pollution, gas fumes (natural gas or from filling up your car), paint vocs, housing insulation, formaldehyde in most everyday products especially fire retardants