Thank you for covering your experience. My daughter's journey is similar . Her first mcas reaction was with water, then salt. We could wrap our heads around it , and sought help. She has been treated very poorly although by medical practitioners in the past. Doctors refused to believe us and even caused us frightening legal action.this journey for all who suffer is so very confusing. I hope your open and honest discussions help guide someone on a less harmful journey.
You've got a GREAT memory, Cheyanne. I wouldn't be able to pronounce the majority of the medications, let alone what it was used for, or when it was given to me. I don't know how you remember anything during your pain & suffering at hospital visits. This series of videos is bound to help people looking for information. You're always so thoughtful & generous towards others. BTW your hair is pretty! Hugs from Jax, FL!
The fact that you have shared your journey I've been able to give information to pcp and get certain testing done. So thank you. It's truly appreciated
You rock girl! I’m so impressed with your ability to find ways to cope with what you are going through at any given time darlin! You just teach me so much, especially the past 2 yrs since my health has been ridiculous as well. It can be very hard to pull up out of the “doom spot” by yourself and successfully at times and I am so thankful for your videos and YOU! 💖 xo
The same thing has also been happening to me when I go into the grocery store lately. Went to Whole Foods today and began itching and my throat tightened up and by the time I got to the car my face and neck had started splotching up.
I have hEDS, POTS and MCAS. My tryptase just keeps increasing. It started at 11, then 13.5 and now it is 14.5. In the last two months I have developed reactions to several foods I have eaten my entire life. Now I can't eat tree nuts, dairy, gluten/wheat, blackberries, mustard, and I have cholinergic itching and can't be even warm, let alone hot. Just had another reaction tonight to food I thought was safe and I'm worried now I won't be able to eat anything soon.
I have EDS and the trifecta. My Dysautanomia is the most debilitating I think. I have the worst chronic fatigue. I rarely leave my bed at this point. My youngest daughter has Mitochondrial Disease and since it's passed down by the mother I keep wondering if that's what this is for me too. Childhood onset (she had severe symptoms before she was even born and when she was born she seemed fine but had major feeding issues and failure to thrive) is when it's the most severe and she's no exception. She's has a small bowel and pancreas transplant. Another transplant before that that left her without a pancreas and on TPN for a year and a half. In that time she had countless line infections and 11 central lines. She was just barely 4 when she finally got the transplant. It was a nightmare. She has done pretty well since then. Had to be on growth hormone and has been in the hospital more than she's been out. Anyway, I do keep wondering if I have the adult onset Mitochondrial Disease because it's passed down by the mother and I have EDS with gastroparesis (no feeding tube...yet, although I had an NJ tube for a while). I have really bad Dysautanomia that has me in bed almost all the time. The chronic fatigue is terrible. I have an appointment for genetics but there's only one who takes Medicaid (I live in Denver for God's sake) so my appointment is in December of 2022! I highly doubt I could afford that high level of testing out of pocket but I'm really dying to know if something shows up in my genetic testing and I hope that doctor can and is willing to test for Mitochondrial Disease. I also deal with mast cell activation syndrome and get the deep bone pain which is horrible. I can take one step (well wheel, I use my wheelchair) into a store feeling normal with my vogmask on and instantly my guts are screaming "GET TO A BATHROOM NOW!!" if I leave right away, it usually goes away but then I might get other symptoms like the flushing and overheating and bone pain. I have only had my throat start to really close on me three times along with my sinuses in the back of the roof of my mouth. Really really scary!!!
I'm so sorry to ask this I Dont want to sound rude but I noticed that you have a slightlu swollen face I want to know if you got that for mas cell please because I'm experiencing food allergies to everything and I have swollen face too.
Great videos ! Have you ever thought about doing a video where you walk up to medical professionals and just ask what MCAS is? Most doctors and nurses either haven’t heard of it or only briefly kind of know what it is. In my experience few can actually tell you what it is let alone how to treat it or what to do about it. I have spent most of my energy and regards to that educating ER staff as you know that is one of the places we are most likely to run into big trouble because people don’t understand what it is.
@@HospitalPrincess yes you are very right on that one! Cheyanne have you found any MCAS patients who have survived and had any sort of successful transplant such as multiviceral or bone marrow? You look fabulous btw! Congratulations on your book too!
Same here! I've not noticed reactions triggered by cats. I've not been around non-hypoallergic dogs - only Labradoodles and Goldendoodles - but thankfully I have no issues with cats. I have been a crazy cat lady since age 4, hahaha!
I was wondering if something happened and I bumped my phone or something (watching in bed on my phone). I struggle with mast cell reactions too but diagnosis has been a challenge. I have terrible doctors and once I get a PCP up to speed and am comfortable they leave the practice off to bigger and better (paychecks) things. Back at square one again. I have the bone pain and flushing and GI issues too.
Thank you for covering your experience. My daughter's journey is similar . Her first mcas reaction was with water, then salt. We could wrap our heads around it , and sought help.
She has been treated very poorly although by medical practitioners in the past. Doctors refused to believe us and even caused us frightening legal action.this journey for all who suffer is so very confusing. I hope your open and honest discussions help guide someone on a less harmful journey.
I’m proud of your ability to educate us and our caretakers. This is such a full time job. Thanks for all of your time and effort!!!!!
You've got a GREAT memory, Cheyanne. I wouldn't be able to pronounce the majority of the medications, let alone what it was used for, or when it was given to me. I don't know how you remember anything during your pain & suffering at hospital visits. This series of videos is bound to help people looking for information. You're always so thoughtful & generous towards others. BTW your hair is pretty! Hugs from Jax, FL!
The fact that you have shared your journey I've been able to give information to pcp and get certain testing done. So thank you. It's truly appreciated
💜
You rock girl! I’m so impressed with your ability to find ways to cope with what you are going through at any given time darlin! You just teach me so much, especially the past 2 yrs since my health has been ridiculous as well. It can be very hard to pull up out of the “doom spot” by yourself and successfully at times and I am so thankful for your videos and YOU! 💖 xo
Thank you for educating us, the cat thanks you too😀
The same thing has also been happening to me when I go into the grocery store lately. Went to Whole Foods today and began itching and my throat tightened up and by the time I got to the car my face and neck had started splotching up.
I am so glad u r taking us along on ur journey...u r such a beautiful person and so informative...thank you for taking the time to educate us 💜
Thank you for watching! 💜
I have hEDS, POTS and MCAS.
My tryptase just keeps increasing. It started at 11, then 13.5 and now it is 14.5.
In the last two months I have developed reactions to several foods I have eaten my entire life. Now I can't eat tree nuts, dairy, gluten/wheat, blackberries, mustard, and I have cholinergic itching and can't be even warm, let alone hot.
Just had another reaction tonight to food I thought was safe and I'm worried now I won't be able to eat anything soon.
Gahhhh, Cheyanne you left us with a cliff hanger ending lol
Love your book. I pray for you every night.
Thank you! 💜
I have EDS and the trifecta. My Dysautanomia is the most debilitating I think. I have the worst chronic fatigue. I rarely leave my bed at this point.
My youngest daughter has Mitochondrial Disease and since it's passed down by the mother I keep wondering if that's what this is for me too. Childhood onset (she had severe symptoms before she was even born and when she was born she seemed fine but had major feeding issues and failure to thrive) is when it's the most severe and she's no exception. She's has a small bowel and pancreas transplant. Another transplant before that that left her without a pancreas and on TPN for a year and a half. In that time she had countless line infections and 11 central lines. She was just barely 4 when she finally got the transplant. It was a nightmare. She has done pretty well since then. Had to be on growth hormone and has been in the hospital more than she's been out.
Anyway, I do keep wondering if I have the adult onset Mitochondrial Disease because it's passed down by the mother and I have EDS with gastroparesis (no feeding tube...yet, although I had an NJ tube for a while). I have really bad Dysautanomia that has me in bed almost all the time. The chronic fatigue is terrible. I have an appointment for genetics but there's only one who takes Medicaid (I live in Denver for God's sake) so my appointment is in December of 2022! I highly doubt I could afford that high level of testing out of pocket but I'm really dying to know if something shows up in my genetic testing and I hope that doctor can and is willing to test for Mitochondrial Disease.
I also deal with mast cell activation syndrome and get the deep bone pain which is horrible. I can take one step (well wheel, I use my wheelchair) into a store feeling normal with my vogmask on and instantly my guts are screaming "GET TO A BATHROOM NOW!!" if I leave right away, it usually goes away but then I might get other symptoms like the flushing and overheating and bone pain. I have only had my throat start to really close on me three times along with my sinuses in the back of the roof of my mouth. Really really scary!!!
I really must add "hot mess express" to my repetoire!
I'm so sorry to ask this I Dont want to sound rude but I noticed that you have a slightlu swollen face I want to know if you got that for mas cell please because I'm experiencing food allergies to everything and I have swollen face too.
Love your videos.
Thank you!
I have all the same signs:/
You cat is so cute
Thank you! He is my handsome little man
@@HospitalPrincess 👍
Great videos ! Have you ever thought about doing a video where you walk up to medical professionals and just ask what MCAS is? Most doctors and nurses either haven’t heard of it or only briefly kind of know what it is. In my experience few can actually tell you what it is let alone how to treat it or what to do about it. I have spent most of my energy and regards to that educating ER staff as you know that is one of the places we are most likely to run into big trouble because people don’t understand what it is.
Ooh, that is a good idea for a video. I would be interested to hear the responses. Unfortunately, most people are not comfortable with being filmed.
@@HospitalPrincess yes you are very right on that one! Cheyanne have you found any MCAS patients who have survived and had any sort of successful transplant such as multiviceral or bone marrow? You look fabulous btw! Congratulations on your book too!
I am surprised you are not allergic to Kitty Cats. Glad your'e not though.
Same here! I've not noticed reactions triggered by cats. I've not been around non-hypoallergic dogs - only Labradoodles and Goldendoodles - but thankfully I have no issues with cats. I have been a crazy cat lady since age 4, hahaha!
That was a very abrupt ending to the video
Yes, I know! I have 2 more parts coming. They were just so long that I had to break it up into multiple parts.
I was wondering if something happened and I bumped my phone or something (watching in bed on my phone). I struggle with mast cell reactions too but diagnosis has been a challenge. I have terrible doctors and once I get a PCP up to speed and am comfortable they leave the practice off to bigger and better (paychecks) things. Back at square one again. I have the bone pain and flushing and GI issues too.