@dr.zac.spiritos: One of the most common stories I hear from patients with hypermobility, POTS, and mast cell activation syndrome is that they end up teaching their providers about the condition they’re seeking help for. It’s frustrating. Imagine finally finding a diagnosis that explains your symptoms, gathering research, connecting the dots, and then walking into an appointment only to realize you know more about the condition than the person you’re asking for help. The reality is that this isn’t a failure of the individual provider. Many of these conditions received little to no attention during medical school, residency, or fellowship training. I know because I never learned about them in my training either. Nearly everything I’ve learned has come from independent study after fellowship. The good news is that awareness is growing. More providers are learning, more research is being published, and these conditions are finally starting to receive the recognition they deserve. Recognition is the first step. Once we acknowledge that these conditions exist and are affecting real people, we can begin building the education, research, and clinical infrastructure needed to support them. #mcas #heds #dysautonomia #mastcellactivationsyndrome #hypermobility

Dr. Zac Spiritos
Dr. Zac Spiritos
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Region: US
Wednesday 10 June 2026 22:49:03 GMT
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mamatoallthethings
Mamatoallthethings :
I had an ENT INSIST my geographic tongue was “black tongue” but he diagnosed it by googling it in front of me… looked at it once, did one scrape swab and walked out. So for any EDS/POTS/MCAS peeps… if you have issues with your tongue hurting like after eating a ton of salt and vinegar chips and/or mouth sores… consider geographic tongue.
2026-06-12 00:44:16
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crazytortoiselady
Beth :
I think I have erythromelalgia now but no one knows what it is so I am struggling to find help getting answers on what is causing it to suddenly start 😞
2026-06-11 00:29:14
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mermaidgypsygirl
Mermaidgypsygirl 🐠 Reef Fizz :
It is crazy but understandable. Glad more awareness is starting to happen just wish it would happen quicker in my area. Just finished up with an allergist and apparently I’m not allergic to anything even though so many things cause allergic reactions including anaphylaxis. I asked about MCAS and she said I’ve never heard of that but when I actually started to say the name she was like you don’t have that because your BP isn’t low. So now I’m in a major flare from all the allergy testing and back to square one lol.
2026-06-12 15:31:00
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zaras_locksfromlove
Zaras_LocksFromLove :
yup! that is how it is for me. I was very frustrated when last month I walked into my primary dr appt ready to ask about adding something new to treat the mcas ( been with her 3 yrs ) and boom a new dr walked in!! No idea why but my dr gone!! ...so I felt the dread of having to start all over hit!! BUT!!! the new dr experienced mcas herself! Also spent time working in functional medicine so I finally didnt have to over explain everything! It was so nice!
2026-06-11 11:51:22
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complexcloud
Complex Cloud :
The last anaesthesiologist I had 😅 I had a great time learning. Finished talking and he was like “so if you say you can’t have something, you really can’t have it. Wow” 🤯
2026-06-12 02:01:48
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kpavlik81
Kristen Haytas :
I have went to several different dr’s, kept getting referred. All I received was a bunch of bills.
2026-06-11 16:08:47
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sapphiressnuggery
SapphiresSnuggery :
Ive bee. saying to my GP for the past 3 years that I suspect I have MCAS and they are all clueless but refuse to refer me anywhere. So exhausting having the same conversations over and over
2026-06-12 10:10:11
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sound.friendships
Ren :
“If you had that you’d have anaphylaxis for extended periods.” - An allergist to me after SIX WEEKS OF MY THROAT TRYING TO CLOSE
2026-06-11 02:00:13
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kaboone
Katheryne Boone :
I just pushed my dr visit a week back because I don’t have the energy to deal with her gaslighting. Luckily I found a great cardiologist and allergist to diagnose me with Dysautonomia and mcas but when it comes to hEDS no help.
2026-06-12 14:50:59
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