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You could also invite Dr Anne Maitland who has been seeing largely EDS/HSD patients...she explains the biology very well, nifty slides, etc. Also discusses her problems with getting certain stains done on GI patients samples, etc. As a side note, I would like to know how drs get their continuing education requirements? How many hours per year? What subjects required ? Shouldnt they be required to do lessons on a major player that affects every dr area....so everyone can learn and distribute the medical load...rather than just sticking with their one particular field? Early days when I first went to dr in 2018...though I wasnt dismissed, chastised or anything...but I was told that mast cells fell into the immunology domain and not many wanted to step out of their silo. Clearly the immunology folks didnt want us since I still couldnt get a diagnosis from them in 2022! I wish there was an academic paper written where it clearly delinates out how mcas hits every field in the medical system...then we can print out the paper and taje it along with all the other paperscthat came before....to the dr office. They wont have time ro ead articles and unfortunately we are paying for an office visit to present them wity info...but sending the research links several weeks before the appt never works. Those messages are too easy to ignore.

Hopefully AI could be able to work with Afrin and Theoharides and others treating patients...to enter in all mediators and related symptoms, treatments that had worked for some and maybe not others. But hopefuuly AI could be able to see some initial patterns...to help the drs who are learning. Maybe it could also make predictive combos or give more ideas for research. Teaming up with university data science research students...giving them real world experience, etc. Maybe a portion of medical students could go to patients...requesting those histories (doing a research in medical records for typical prior diagnosis...EDS/HSD, POTS, fibromyalgia, chronic fatigue, multiple chemical sensitivity, etc, etc, etc...)....finding these folks, doing the complete medical histories as well as the QUESSI survey and other surveys.. give the med students the leg work as part of their training....give them training about mcas so they could analyze them in discussion rounds, etc. If those patients haven't gotten any possible diagnosis of MCAS....the students could give them a possible explanation.

I would like to see a vid about what the mast cell disease does to the body long term...for ppl who have had this for more than 10 years BUT stilo haven't been diagnosed. (2022, I was told by an immunologist that there was absolutely no way I could have MCAS, wrote this in my chart...as I brought the topic up....I knew otherwise as I had been researching it. This was 2022...in Madison, Wisconsin....the dearth of any advanced medical information....midwestern states?) Lots of fb grps though that offer support, answer questions, etc.

When Dr Afrin and Dr Theoharis Theoharides were doing research in the late 1990s, the medical community largely ignored their research. They had trouble getting funding to support their research to further it along. Clinical doctors didn't believe the research....probably largely because they didn't learn about it in med school. There is no tracking of those of us who went to the dr 10yrs ago, 20yrs ago, etc, etc, etc. This situation is the same as Chronic Fatigue Syndrome as well as Fibromyalgia....recognized medical diseases but lots of doubt about it in medical clinics, etc. Finally 20 yrs or so go by and they are accepted diseases...as the reason but still no real treatment. Now that more ppl have same symptoms as the 'strange ones that came before'...in long covid and after the spiked covid vaccine...money started to be pumped into research and that is the only way that MCAS diagnosis actually was able to see the light of day. If ppl would have believed in the initial research of Afrin and Theoharides and others....perhaps they would have been farther along by now. But we should show our appreciation to Afrin and Theoharides for sticking to it and not giving up. Others might have given up because they were largely shunned by their professional peers. I find it interesting that more women have this than men....especially because ppl in power have dismissed women's thoughts, opinions, etc in any professional career.....it kinda makes sense unfortunately.

I’m in MN too and I am having a very hard time with Mayo. Wish Dr Afrin was still at the U

Wow! Like sitting at the feet of Plato in ancient Athens as he philosophises on our woeful knowledge of reality. However, ignorance is bliss and where MCAS medicine is right now is very depressing - with decades of research ahead. Our children and grandchildren will be the ones who benefit.

How annoying Even Hospitals do this How dumb

You sound like you got a great doctor! Could you recommend her please? I have a friend in MN that's desperately unwell.

POTATO!🥔🥔🥔

What treatment helped?

Fantastic podcast. Perfect. A plethora of information. Thanks for posting it.

Well done My daughter is a pt from MUSC still trying to find her cocktail

Such a cute poodle 😍 i was following your blog and i am very happy for you that you could keep your dogs despite of your health issues. I had to search a new family for my poodle as my mastcell flares got really worse cause i couldn‘t get out of my appartment for days. (I’m living in Europe and still fighting for disability since 2015) Living alone without enough support forced me to do this. My heart is still bleeding every day, even after more than 2 years. My dog Eli brought me so much joy and fun each day. But on my bad days i couldn‘t care about him, after fainting more than once outside in the night finding myself alone on the ground at Night, without any help i capitulated and gave in into the pressure from my families side. He was my angel, i‘m comforting myself he found a very caring, loving and active family and i can still visit him from time to time. Thank you for advocating MCAS and all the connected disorders 💕

May I ask what medication they prescribed for you to increase oxygen?

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Amazing!

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Such a good boy to know when to stop! And I'm glad you were done too so you could rest.

You guys did amazing!!

Good job!

You're an amazing inspiration! I know I'm beyond grateful for the information you have made available, and I can't be the only one. Your grandma will be with you for sure! Good luck and safe travels! <3

So powerful, informative and inspiring 👏🏻👏🏻👏🏻 I love this content and can’t wait for more. Good luck at Nationals (not that you need it;)!