My niece suffers ftom this horrible disease, she and her family have been through hell. I keep praying for a cure or more recognition by the health care industry fir help with medical costs.
I totally feel you and will pray for you!! I've been itching all over my entire body for 2 years and spent 1000s on doctor's treatments to no avail so I know about what you are going through!! I feel so bad for everyone who is suffering from this crap!!
I’m very glad I’m extremely healthy if not then I would be (almost since I resist it) fainting daily. My vision becomes blurry and it’s horrible. I can’t eat eggs, Mayo, and many other things. I can barely eat anything other than apples. I just drink some yogurt and then the next second you see me on the floor like a dead fish. Mastosysosis is very bad and there’s no cure unfortunately…
I began having noticeable food issues thought to be allergies 3 years ago, shortly after a very unusual & serious pneumonia that kept me hospitalized over a month & resulted in lung surgery. Never experienced allergies until adulthood & were due to workplace environmental conditions that made entire staff sick. Had trouble catching my breath & itching from head to toe about same time food issues began. Initially was blamed on lingering issues from the severity of the pneumonia. When a couple years went by & it continued I was told it was probably just anxiety. I didn't buy that for a minute. The increasing issues were going to be followed up with a specialist, then March 2020 hit & I understandably was placed on the back burner...and told to be extremely careful during the period. Got the recommended vaccines, had BAD reactions that...perhaps coincidentally... seemed to worsen the already crazy symptoms I was experiencing. Haven't gotten any further, but one of my primary Dr's thinks Mast Cell Disease should at least be considered given my extensive symptoms (I only mention a couple here). They warned me finding someone that knows about it and/or believes it is going to be no small feat. I feel truly sorry for this girl. Even if we have different issues, I understand what it's like to have an illness take up your entire existence & trying to navigate insurance/medical costs only add to the misery.
That's one thing that no one takes into account - the cost of just the OTC medications, alone. Sure, I can get my various antihistamines over the counter - but just the sheer volume of them is insane. And the Cromolyn - at times, it has been all that's helped, but I'd have to rob a small bank to afford it. I'm with you, girl!
Same. They have me on over the counter stuff which is so expensive and gets used up quickly. Are you also taking prescription meds on top of the OTC meds?
Dear God that sounds horrible. What medications do you take and do you feel better now than 2003? It's my first year and many many ER visits and a whole life swing
@@asianactionactor4204 hi. I have had over 100 anaphylactic reactions up to now but have stabal7zed some since starting cromolyn. I take Cetirizine, ranitidine, Zaditen, Atarax, cromolyn, Singulair, Nexium, benadryl orally and subcutaneously, nebulized cromolyn and salbutimal....I know it seems like alot but I'm still here! Just stay positive, focus on the things you CAN do and not the things that you can't. Live life in gratitude and try to stay calm and do things to restore your soul daily. Best of luck!@
@@katehill1191 I will research these! cromolyn, atarax, zaditen, ranitidine, cetrizine, singulair, nexium, benadryl are all oral medications (pill form) correct? Fo you take them everyday or as needed? I've been given nose sprays and eye drops, but I dont feel those they help much. Have you tried a low histamine diet and did it help you? I've been hearing a lot about cromolyn, seems that it made the difference for you. Must try that myself. Thank you so much for the advice!
In the same boat. I really feel for you. I wish we were treated better by health professionals and the general public as its mostly abuse and neglect unfortunately.
Bless everyone with this. I had it since I was just born and i heard some people’s mast cells disappear at 11 years old. I’m currently 27 and still have it.
@@asianactionactor4204 Hello, Yes I have found relief with Oral Cromolyn Sodium, 200 MG’s 4x a day mixed with water. I take singular in the morning and zyzal at night. My hands, fingers and wrists were giving me a lot of pain, my doc put me on 200 mg’s of Hydroychloroquine 2x a day and methotrexate 15mg’s once a week. I also take Quercetin everyday and MOST IMPORTANTLY find your triggers! Foods, stress, hot/cold weather changes will all trigger your mast cells. Pay attention to your body. You will find what works for you and things will look up for you. Hang in there and don’t give up, it all comes together but it takes time😊
@@asianactionactor4204 This is way later, but for other specific and rare conditions there are some very helpful subreddits where people share information and resources. There may be some for this as well. Just in case you're still looking for information.
I feel you girl. I was just diagnosed with this and I almost lost my life 3 times. Thank god the ambulance got here ontime. It’s so scary that I’m afraid to be alone nowadays. I was put on cromolyn but I didn’t respond to good.
Same here man. It's a bit of a lonely road and we're lucky if people can be understanding. How long have you been dealing with MCAS? Im new and think I'm probably under medicated. Having bad symptoms everyday
Thank you for sharing, I've recently started exhibiting symptoms of this disease. I've had to go to the ER twice since May. Best wishes to you. Hope you're doing as well as possible. Curious--do you also have EDS, or have you made sure that you don't have it, as well?
You mentioned EDS, I have Marfan's but I have only heard people mention EDS linked to MCAS. Have you heard or do you think Marfan's is also linked to MCAS?
I also have Mastocytosis. I quit the prescriptions. The steroids, mast cell inhibitors, anti hystamines, radiation treatments, all of it. I am on a very strict diet, I don't use harsh chemicals in my home, and I am much better than I used to be when I was on all that stuff. I do still carry an epi-pen, but it's been years since Ive needed to use one. I do still have symptoms, but they are not as severe as they were on all the meds. I'm sorry you have to live with this disease, it's no fun. Maybe do some research and talk with your doctor about controlling symptoms in healthier ways.
It's my first year with the disease. I'm only on two histamine blockers. I wanted to at least try the other medications out there. Also I wish any of the doctors recommended low histamine diet. It's a huge difference! How long have you been living with this disease and do they know if it shortens your life or just makes it harder?
@@avery1199 That's good to know. I've read somewhere the prognosis could be 16 years after the initial diagnosis. Do you still feel some symptoms each day?
As i understand it reducing histamine is helpful for people suffering from MCAL. Stinging nettle tea is great for that. and it's cheap as chips or free if you have it growing in the garden. bless you for being so courageous in facing your health challenge. Best wishes to you from the UK
I feel itchy too. Sometime it is not below me to ask a stranger to claw my back.. Yep, I have it all, POTS. EDS, MCD. etc. I hope you get a back itcher for gift, maybe two. I know your pain!
Crap isn't it x I tell myself I'm lucky because others are worse off, but at times that wears thin. When you're in massive pain, have delicate eds skin but are itching so much it tears, you're exhausted and can't wake up from a combination of having some mystery food or something you've reacted to, you're hungry but don't want to eat because your stomach is bad, anything goes in it comes out fast, you have no appetite, you know you need to eat, ypu feel weak and dizzy. You haven't the energy to get up and cook something, but there's nothing quick and easy to prepare that won't make you I'll abd start the cycle again. Oh I forgot the fever abd feeling like you have triple flu. Those times telling myself other people have it worse wears thin. I tell myself I'm lucky, it's not cancer etc, but I was beginning to think I may have because I felt so, so bad. But all these well meaning people tell us not to take medication try this herb or that plant. Right now I can't eat.. Animal milks Nuts Eggs Potato Gluten Pork Lamb Seafood Kiwi Melon other than water Melon Tomato and orange make me hyper active, which is crap when you feel so I'll but your brain is going like crazy. Sorry for the moan, what can't you have?
That's a long list. I'm allergic to... Heat Changes in temperature Anxiety/stress Some paints and random chemicals Red food dye Literally any disease/infection At least you can control your intake of food allergies.
I have systemic mastocytosis and will be seeing a doctor about testing for Hereditary alpha-tryptasemia .....i dont have a doctor that specializes in this.....evryday is a mystery to me.....the last two nights....i thought i was having tooth issues.....my whole jaw was pulsating excruciating pain....it travelled into my head....and pulsated worse than a migraine....the next morning....it was gone.....got to love mast cells....
I have this. My docs are keeping me in a low daily dose of prednisone until I get a full work up at univ. Michigan later this month, in addition to four other antihistamines (which I think do absolutely nothing) I've been in urgent care almost every month getting steroid shots for about 3-4 months now. I get them so bad when I'm asleeo, they wake me up. That's a good day. Bad days are when my eyes, lips, and throat swell, and it's back to urgent care or ER.
Prednisone has saved my ass on many occasions. I don't take it daily, but when my MCAS flares and I'm having a really bad day, that's the only thing that gets it back down when everything else has failed.
I wonder if by any chance the mast cell activation is caused by heavy metals like nickel. I may have something similar to this or histamine intolerance and I suspect if I do I got it from years of a stainless steel dental appliance. So, remove stainless steel, switch to ceramic cookware cut down on histamine foods in the meantime and see if the mast cells start functioning again when you add in histamine foods months or a year down the line. Cilantro is supposed to remove nickel and heavy metals. It would be cheaper than all those drugs and if it works it would cure you. At least worth a try.
I gagged at that, I hate coriander, as you call it cilantro. The fact is when you have this you can become allergic to anything. Introducing high quantities of anything isn't a good idea. Sorry though but I doubt cutting out metal would cure her or me.
MrApplewine. If you see this, which i doubt. Can you please reply. I am dealing with what i think is Mast Cell. It seemed to have started after dental work. I did allergy testing, and found i was slightly allergic to nickel. I have 3 porcelain fused to metal crowns on my teeth. Do you think the crowns could have caused this?
I'm in the same boat but don't have $300/Month to pay for my medication. I hope to God that Medicare covers this stuff now. I have heard good things about Cromolyn. Haven't heard about Ketotofin. This video was made a few years ago, so maybe something has changed. I had a paradoxical reaction to an H2 blocker and finally had to go off it today as I can barely eat anything my stomach is so unsettled and I've had projectile acid reflux every night for the past 3 nights that I hadn't had previously. I have just recently gotten started treating this condition over the past year and this is just the beginning. Not really looking forward to trying God knows how many more drugs before I find a combination that works. The state I live in has 1 specialist and that's it. When I explain it to my other doctors they look like a deer in the headlights so there is essentially no coordination of care. I also have Dysautonomia which is not being treated because nobody in Georgia specializes in that. The two might be related but for now my immunologist isn't sure. He's trying to work with limited resources to treat it indirectly. My entire digestive tract feels skinned right now and I've been trying to hold off going to the ER. I don't think I can go through another night of this. I just hope it lets up so I can sleep tonight.
@@asianactionactor4204 Scrolling through the comments and seeing this one from you here too. Medical dismissal is not only disheartening, it can be extremely harmful. I'm really sorry. I hope you know that if your doctor is not listening, you CAN get a different doctor. I'm not sure where in the world you are, but most places that is ultimately an option, especially with so much being online now. Best luck.
@@Myworldmymind908 I can't speak for them, but for me, it's extreme itchiness all over, rashes, lesions on the skin that protrude out and are blood red, hives, shortness of breath, an extremely painful and swollen throat, dizziness, de-personalization (sometimes feeling so out of it, I forget where/what I am), feelings of impending doom, allergic rhinitis (sneezing, blowing out excessive amounts of phlegm), headache/migraines, feeling feverish at times, feeling cold, hand tremors, restless leg syndrome, insomnia etc... depression, and really bad anxiety.
I also have MCAS, I am on Zyrtec, Pepcid, Quercetin, Cromolyn, and Montelukast, along with Benadryl. Thankfully with my insurance the Cromolyn is $10 a 96 ampule box. Maybe the price has come down since you posted this video 😀
I feel so sorry :( have you tried antihistamine injection that last a few weeks in your body? Might be a cheaper alternative.I just discovered I have Mast cell last year been breaking out in hives but no way near as severe as yours. Sending you lots of love and strength!
@@detectivewiggles I have chronic lyme disease and multiple co-infections that are the cause of the MCAS I am now dealing with. Cromolyn sodium, Allegra, pepcid, quercetin, vit C DOA enzymes and carnivore diet have helped me. I'm praying for you and anyone else out there suffering with this. God bless
@@lauraa2877 I feel you! I was diagnosed with chronic Lyme disease last year. I believe I’ve had it since I was a kid. I believe it also triggered my MCAS and I’ve been experiencing allergy symptoms for 20 + years! After getting Covid 2 years ago all my symptoms blew up 10x worse! I am going to be doing a treatment called Lyme magnetic protocol to help treat the Lyme. I just started Ketotifen for MCAS and hope it works because over the counter H1 and H2 blockers and Quercetin did nothing for me. I’m also doing the GAPS diet to heal my leaky gut, which I believe totally contributes to it! Hope you’ve had relief!
I was terribly sick in my early 20s because my mom didn't realize the hives from the sun when I was 5 world be a life long condition. Then, in 2004 I was diagnosed with CML. Suddenly, I was no longer suffering debilitating stomach issues. My doctors chalked it up to the Leukemia. Turns out, the Gleevec I was taking for the CML actually put the Mast cells into remission. At least until a few years ago, when it stopped working for the CML in spite of the dosage being raised to maximum. I began to vomit for about 6 hours a day at that dose, and after suffering that for months I discovered that the Leukemia was not going back into remission. Now, the Mast Cell Disease is no longer in remission either. Grass seems to close my throat, hours after it's been cut. My eyes stick shut as if I'm wearing dry contact lenses. My joints all ache and I have to run to the bathroom every 15 minutes. I keep scratching holes in my skin accidentally. I plan to make an appointment with my death doula soon.
Why doesn’t her doctors try her out of chemo drugs or trypase inhibitors? I know what I just said is nuts. But if you are familiar with this disease and aren’t getting better it makes sense
The way you are standing it seems you have lot of stiffness in the spine and neck muscles. Please try a good chiropractor and take at least 6 to 7 sessions and see if you feel any better. It really did wonders in my case my MCAS symptoms improved by more than 70% after spinal adjustment done by a very good chiropractor. Surely more worthwhile trying it than having these harmful chemicals...
I am confident you will overcome like I do. Please start thinking that you have no worries, no tension, no stress. Stress is prime cause. I would not ask you to discontinue medicines but gradually you can do that. Throw away your internet, go to some more oxygenated place often with all emergency medical support. Take natural immuno boosters like certain berries that reduce free radicals. Always remain in jolly mood. I had suffered a lot due to this lesser known syndrome. The doctors have hardly any idea about it world over.
I got checked through in this order: 1. Tests for food allergies and food intolerances 2. Endoscopic examination 3. Psychotherapy to determine whether or not it is a psychosomatic disorder 4. Blood levels 5. Skin biopsy 6. Bone marrow examination
Peter Hooge sounds about right haha! Good old EU.. Tell me, did the following numbers come back with anything? 1. , 2. , 4. , 5, ? (I'm presuming 6. must have come up positive) ..
Please people if you need cromolyn have your doctor prescribe capsules. There are compounding pharmacies that can make them for a reasonable price and you don't have to deal with the taste and hassle of the liquid.
You may want to look into seeking help from an Ericksonian hypnotist. My wife has Mastocytosis and it helped her greatly. Meditation helps significantly also. Cannabis also helps *hugely* in many regards. I hope this helps.
VitruvianVision He should clarify, that PURE ISOLATED CRYSTALLINE CBD is a mast cell stabilizer. CBD affinity receptor sites exist on the surface of a mast cell, and the CBD acts as a degranulation inhibitor. Marijuana in it's whole form, or full spectrum concentrates, are not good because they contain pollen, plant materials and other chemicals that can be triggering.
Thank you for the info Kayla. Have you found cbd helpful yourself? Where can pure isolated cyrstalline cbd be found, do you have brands or websites you get it from?
Bitch this is 100 percent true. You are honestly a disgusting human for saying this. thousands of people in the world including me suffer with this. I see you commented this 3 years ago so hopefully you have gained some common sense but if not you’re really gross
