Discover and read the best of Twitter Threads about #MCAS

Most recents (17)

1/
Summary - this paper is a WEALTH of information for #MCAS

Pain is found in more than 75% of #MCAD patients

There is no official guideline for treatment of MCAD. The paper is about mediator-induced acute & chronic pain + therapy options

Prevalence of #MCAS in Germany is 17%
2/
Wide-spread distribution and differences in mediator expression mean all organs/tissues are affected & presentation is very diverse

Can present oppositely among patients or even in the same patient at different times, or in different sites in a patient at the same time
3/
Treatment involves trigger identification/avoidance + control of mast cell mediator production/action.

Mast cells and the nervous system influence each
other’s responses through mediators and cytokines

In the periphery mediators can stimulate receptors, resulting in pain
Read 19 tweets
Adding thread about vascular and nerve entrapment
Thread: Thank you @violetbakes for the pictures backing up the next installment of what I think would be useful to #EDS patients. Something that could be used if going to the hospital
Thread: thank you @ABMollyblum for the next installment of my pinned thread of things I’ve found useful in managing #EDS #EhlersDanlos in my wife and daughter. Info for Gastroenterologists for your GI appt. alanspanosmd.com/wp-content/upl…
Read 11 tweets
When a doctor says “why do you need an #EhlersDanlos diagnosis, there’s no cure.” It demonstrates a lack of understanding of medicine, science and patient self-advocacy. I am NOT claiming these tweets are the best or most current sources, nor is the list of reasons complete 1/11
For most with #EDS the extreme relief of being told “it’s not all in your head, it’s real and there are others like you” is reason enough. So many with EDS feel alone. Diagnosing someone with conversion disorder instead , is it’s own problem! 2/11 ncbi.nlm.nih.gov/pmc/articles/P…
While #POTS, #MCAS, #Osteoporosis in young women, and many other conditions may be less common in general they are very common in the #EDS population. If you have a horse, think horse conditions, but if you are looking at a zebra, think zebra diseases 3/11 ohtwist.com/about-eds/como…
Read 12 tweets
My wife and I wow a huge debt of gratitude to @roomcmoo and @H2OhTwist and they don’t even know what they did! You see my wife (#EDS #POTS #MCAS) and my daughter (#EhlersDanlos) are at the beach for an 8 day vacation and walk up to a mile each day. So what??
I met my am a wife almost 6 years ago. At that time she had chronic bronchitis and both she and my daughter had bad asthma. I also learned her joints dislocated regularly, she had G.I. issues, she would get adrenaline and a million other debilitating symptoms.
She had been to more doctors than she could count and had more test then she could count. Her medical file was at least 8 inches thick. She had never gotten a clue to what she instinctively believed were connected conditions. She was told “it’s all in your head” or “anxiety!”
Read 10 tweets
There is so much to unpack about gender and #chronicillness, I barely know where to begin. But let's give it a go. Data THREAD first, personal experiences second. (1/9) #millionsmissingspeakout #pwME @MEActNet
Up until very recently, the majority of medical research has been performed on men. It used to be against the law to include most women in clinical trials. Even after that law was overturned, a second had to be enacted requiring we be included. #pwME (2/9) tinyurl.com/y35rtwzv
The difference in the way women present symptoms and the ignorance around this kills.
When women have heart attacks, for example, the typical symptoms veer sharply from what med students learned from their textbooks. (3/9) #millionsmissingspeakout #pwME psmag.com/social-justice…
Read 9 tweets
1of x: BEST analysis of what really is happening on the #Boeing737Max issue from my brother in law @davekammeyer, who’s a pilot, software engineer & deep thinker. Bottom line don’t blame software that’s the band aid for many other engineering and economic forces in effect.👇🎖🤔
Some people are calling the 737MAX tragedies a #software failure. Here's my response: It's not a software problem. It was an

* Economic problem that the 737 engines used too much fuel, so they decided to install more efficient engines with bigger fans and make the 737MAX.
This led to an

* Airframe problem. They wanted to use the 737 airframe for economic reasons, but needed more ground clearance with bigger engines.The 737 design can't be practically modified to have taller main landing gear. The solution was to mount them higher & more forward.
Read 14 tweets
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets
(Thread)

EDS experts shouldn't mention co-occuring anxiety in their research articles unless they commit to making it explicit that #EDS #POTS #MCAS can all mimic anxiety symptoms+that it's common for psychiatric misdiagnosis 2b weaponized against vulnerable patients leading to-
-- #mPTSD and iatrogenic trauma.

Anything less and they're giving non-expert rheums and PCPs carte blanche to slap "it's all in your head" onto every "difficult" patient without reading further for nuance. It's irresponsible, unethical exacerbation of patient trauma.
Thanks for coming to my TEDtalk.
Read 11 tweets
I have a ton of brain fog today, so bear with me, but I saw a lot of convos happening about #MCAS last night and I wanted to chime in with some info I've learned in the last decade since my #mastocytosis diagnosis.
For those unfamiliar, everyone's bodies have #MastCells. They're part of your immune system and they're responsible for a few things, but primarily they store ~200+ chemicals (called mediators) and release them when fighting off infections, allergens, etc.
These mediators do lots of different things, and some of them are responsible for telling other cells in your body what to do. When Mast cells release mediators it can set off big chain reactions that can impact most, if not all, the systems in your body.
Read 18 tweets
Diseases like #mcas and #mastocytosis aren't exactly invisible illnesses. Swelling, hives, rashes and big, dark circles under our eyes are pretty visible signs, not to mention the bruises we get from bumping into stuff! 🙄#chronicillness #spoonies #mastcell
Flushing..dermatographism..yep, pretty visible. ☹️
If you watch Summer Caroll's interview you can see her flushing kick in the longer she talks wvua23.com/living-a-night…
Read 3 tweets
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
1/I've said many times that I am poor because I am unemployed (except for my writing) and I am unemployed because I am disabled.

I am now officially rejecting that shit.

I am still disabled. I still am not employed.

#Disability #ChronicIllness #poverty
2/But the reason I am unemployed is because society has deemed me disposable. This isn't on me.

#disabled #DisabledPeopleMatter #PplWDisabilitiesMATTER
3/It's because society has decided the WANTS of the abled (specifically in my case, to use fragrance and decorate with balloons) are more important than my survival. This isn't on me.

#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
Read 18 tweets
This is the Berlin Conference all over again. Cut & Slice Africa, disregard what the indigenous owners of the land say. But you make your choice. Here is the thread.
TiTLE Northern Rangelands Trust (NRT), and IEBC Kenya on scrapping of #Constituencies in Northern Kenya.
#NRT, @USAID several @EU_Commission countries are lobbying the @IEBCKenya and the Environment, Mining, Minerals, Wildlife and Pollution Committee in #KENYAN Parliament to scrap constituencies to make one single 'manageable' constituency in Northern Kenya.
[Note that #NRT is owned by the @RoyalFamily. It is NOT owned by 'the communities' - who have no land title deeds - all this land has been "grabbed" though eviction, burning homes, killing cattle, poisoning boreholes and "NRT" does not benefit the community in any manner]
Read 13 tweets
[Food, dietary restrictions]

Working on a mind map of my #MCAS triggers

This is part of the fermented/Aged Food branch. One intolerance has a cascade effect on other foods.
[food, dietary restrictions]

This mind map thing is really helping me process some feels and I think also it's less "here's my huge list of food intolerances" more "a few categories that have many sub categories"

Which is helping ease my internalized ableism tbh
[Food, dietary restrictions]

I know there's a lot of overlap with mast cell triggers, so in case this helps anyone here's my current mind map of #MCAS triggers

Help with captioning is appreciated.
Read 12 tweets
One last thread on the #DysConf2018 by @rndNumGen. Hasan Abdallah of The Children's Heart Institute presented Sunday on "Stubborn POTS: Why won't my #POTS respond to treatment?" If treatment isn't effective after six months, it's important to dig deeper. (1/7)
@rndNumGen #POTS is a symptom complex rather than a disease entity in itself, with an underlying heterogenous pathophysiology. It has an unpredictable varying course, and the medical management paradigms is evolving. #DysConf2018 (2/7)
@rndNumGen To dig deeper, look at underlying pathophysiology. Look at medications that are being used--dosages, drug targets, interactions, etc. to see where you may be able to make changes. Look at comorbidities;they lead to more clinical severity and complex management. #DysConf2018 (3/7)
Read 7 tweets
[food]

A really weird thing about #MCAS is that I can eat a food and be fine, but if I eat leftovers of the exact same food a day or two later I'm ... not fine

Before I knew abt MCAS, I thought I was just immunosuppressed and reacting to bacteria other people could tolerate
This is sort of true, actually

I was probably reacting to the products of microbes breaking down food

More on the science of that here

#MCAS

mastattack.org/2017/10/mastat…
[food]

When I have a bad MCAS reaction, it looks a LOT like food poisoning

I won't go into the gory details, but at my worst I need IV fluids and prescription strength anti-nausea meds (which happen to also treat anaphylaxis like symptom)
Read 22 tweets
Called 111 because the vertigo and headache is really not lessening since that MRI, and got an appointment for an out of hours GP at 8pm. Also just discovered that patients with MCAS have been found to react badly to gadolinium (the contrast used in MRIs). I have MCAS.
Surely someone should maybe have warned me about this before? Like "Hey, this pre-existing condition means you struggle to excrete this very damaging toxic metal in the same way most other patients can".
I'd have pushed for an MRI without the contrast if someone had warned me. I'm now kind of furious.
Read 11 tweets

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