Discover and read the best of Twitter Threads about #mcas

Most recents (24)

We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
Read 25 tweets
A lot of #EDS patients talk about developing high pain tolerance because of our frequent dislocations. I want to take a second to talk about the assumptions embedded in that phrase because it so often minimizes what were coping with. 1/8
I have severe allergies to most meds, I have no stable pain meds, I have bone pain from #MCAs, and I dislocate daily. I'm in a lot of pain all the time. And claiming I have "high tolerance" is a disservice to what I'm actually coping with. 2/8
I've learned not to cry, not to throw a fit, to keep working through the pain, because I've been told I need to my entire life. I grew up with Drs gaslighting my pain. I became a teen with doctors gaslighting my pain. I entered my 20s in the same way. 3/8
Read 8 tweets
Damn it.

I’m going to assume that “severe allergies” applies to people with Mast Cell Activation Syndrome (MCAS). #NEISvoid
So I’m eager to get a COVID-19 vaccine, but it’s looking like people with #MCAS or severe allergic reaction histories might want to wait until they have time to include people like us in safety trials.

Emergency approval processes apparently allowed for skipping that step:
Bottom line:

The different vaccines have different methods of action and are produced differently.

If you’re healthy without known allergies or immune issues, you’re probably good to go.

But if you have a history of allergies or autoimmune concerns, talk with your physician.
Read 4 tweets
Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"––I really do want to understand what is at the heart of this. Frankly, it has been hard.
There is a lot of misinformation floating around (or simply lack of education/awareness––again, it's a lot of different conditions, and I know next to nothing about most of them, other than the ones I happen to have). Image
I see a really big gap between how American patients are responding to this information v. patients in the UK & Europe, and I don't fully understand all of the reasons for that. I think that's worth discussing amicably, if we can.
Read 37 tweets
Going to try to pick up where @ahandvanish left off on live-tweeting today's NIH #LongCovid workshop

"We're really having an epidemic of this chronic critical illness and it deserves attention as well." - Dr. Terri Hough, OSU on pulmonary sequelae of #LongCovid.
GI/liver symptoms in hospitalized patients prevalence:
- Dr. Hashem El-Serag (Baylor)
Read 34 tweets
I am so angry. So much of Jenny’s case should / could have been caught when she was a child or teen, before she ”got sick.” It would not be hard to get this right. We do not need some miraculous feat of science to put into practice what we already know to be true.
Any ME org that is not joining forces with other organizations to educate the ME community on #EDS and #MCAS, that is not talking about comorbidities, is failing patients. I count @MEActNet in that boat. We have got to do better.
Jenny was diagnosed with ME when she fell ill at university, but she was born with #vEDS, which has a genetic marker. She had obvious phenotypical signs, but they were all missed.
Read 4 tweets
Separately, I’m trying to work on a Medium post re: my concerns about people pursuing neurosurgery. My basic position is diagnosis for all, surgery for a few and only after 6-24 months of intense self-education, seeking multiple opinions, and exhausting nonsurgical options.
(Unless your doctor deems your case medically urgent, which is rare.) I am similarly having a hard time writing this piece as it quickly becomes an overly long, overly technical treatise. This topic is so nuanced and complicated, with many unknowns.
So if you have any questions about surgery...please do ask them. It might help me figure out how to frame and focus the piece!
Read 25 tweets
So #thankful to have spent the last many days wandering a deserted island, doing what I haven’t been able to do in a good decade. A woman in a peach windbrea...
I am #thankful for my body, which is fragile but resilient. This year, I spent six months mostly bedbound following #COVID19. In the aftermath, I found myself almost as weak as I was after my neurosurgeries. COVID also worsened my #MCAS to a terrifying degree.
In September, I began a (second? third?) long climb of physical therapy and strength training so that I could stand and walk again.
Read 10 tweets
A night of bad ideas. Got sudden flushing on my face near my eye, cause unknown. Then smelled peanuts so went outside with door open hoping that smell would go away, hoping it to be cause of reactions. Came back inside shivering hour later. Still peanut smell.
#MCAS
Whole body is itching, no clue of source but could be airborne peanuts. Except I’ve no clue where the peanut smell is coming from. No H1 antihistamines available or prescribed (yet). Almost feels as of something os sticking to my body that causes it.
But don’t have a clue so was kinda thinking to take a shower. Except allergic to warm water/showers. And stacking reactions while already flushing seems highly unwise.
Waiting it is. 😫
Read 4 tweets
On the use of mast cell stabilizers in #COVID19 👇 with a list of publications starting to document positive results clinically

Mast Cell Activation #MCAS/ related mechanisms have long been discussed by #COVID19 #LongCovid patients has a potential issue beahind their symptoms
Found this paper on Mast Cell Activation in #COVID19 interesting, at least in theory, because it links #MCAS to the multi-system inflammatory syndrome in children #MISC + blood circulation issues in capillaries

Will read later #LongCovid #apresJ20

pediatricsresearchjournal.com/articles/kawas…
Read 4 tweets
There are so many of us with chronic illness. But because we're not visible (there are MANY reasons behind this) it's hard to FEEL like there are lots of us. When it felt like it was just me, it was easier to accept being dismissed, ignored, etc by physicians. (1/8) #NEISvoid
Twitter in general, and hashtags like #NEISvoid in particular, are game-changers here. They show us that the world is full of people who are chronically ill.

Why does that matter? Great question.

1) We feel less alone. This helps us realise we're not "broken" (2/8)
2) We LEARN from each other. A v meaningful example for me is chronic illness originally attributed only to #fibromyalgia, #ME, #CFS, etc, which are notoriously hard to treat. But learning that #POTS and #MCAS can be mechanisms in this illness opens up doors for TREATMENT. (3/8)
Read 8 tweets
#DysConf2020 Neurogastroenterologist @LauraAPace talking about the multidisciplinary #EDS clinic she helped to set up -- time to dx for the geog area was v long, time to being seen by a clinical geneticist for referred pts was THREE to FIVE YEARS.
Wanted to track comorbid disease burden/syndrome burden. Clinical phenotype was often more severe than the diagnostic label suggested (for hEDS, etc). Need a more comprehensive dx for these patients.
The clinic ultimately didn't work bc, when the clinicians from the specialist EDS clinic recommended patients be followed up with formal screening for potential autonomic dysfunction,& passed on the testing/mgt outline to their primary care physicians...
Read 12 tweets
@satish_r_raj: pharmacological treatment for #POTS. Notes that non-pharm mgt (compression, fluid balance) are generally the foundation of management, even for the many pts who do also require medication as part of their mgt strat. #DysConf2020
Not just about high HR - tilt table cf normal controls, obv the #POTS pts get HRVelevation — BP may not change heaps — but also they feel MISSRABLE, v unwell, presyncope. .@satish_r_raj #DysConf2020
Up to 70% of #POTS pts have low blood volume!! Not heaps of data supporting this historically, but theorised that hypovolemia may increase sympathetic tonicity & trigger hyperadrenergic state. Now have data supporting this in forthcoming study! #DysConf2020
Read 36 tweets
@KylenH @bennessb Yes, I think so. I don’t have the super-soft/delicate/stretchy skin of EDS classic type,, & although I do get atopic dermatitis it seems to be different to the irritation & peeling skin I get from tape. I also get a particular (&, I think, related) skin reaction to anything that
@KylenH @bennessb rubs, including my otherwise-awesome thumb splints. Alsoalso very prone to skin tags in high-friction areas, fwiw. I don’t seem to have full-on #MCAS on anything, but I do wonder if #MastCellsGoneWild could be implicated somehow,
@KylenH @bennessb esp given my recent experiences of simultaneous #multisystemic #autoimmune #chronicillness affecting GI system (#IBD: #crohns but also #GORD), skin (#PyoG), joints (#AnkSpond/#spondylarthropathy/ seronegative #arthritis) & prob aspects of the respiratory system
Read 9 tweets
Would anyone like to participate in an open-minded panel discussion about links between #LongCovid, #MECFS, #Dysautonomia, #PoTS and #MCAS? A friend needs people for a conference. Let me know! 👇
@TilmanAndris Tagging you as we had an interesting chat before.
Also tagging @exceedhergrasp1.
Read 4 tweets
Just a reminder when you talk about "coping" strategies for the pandemic, self reflect a little on the classism and ableism in your recommendations. Spend time outside? I'm allergic to that. Cook something nice? My food list is 5 foods. Have a drink? I can't 1/
A friend contacted me upset that her unis chats about coping all counted on 1. Having money to buy Netflix or puzzles or fun materials for hobbies and 2. Being able to work out, go outside, be active, enjoy the "simple things" 2/
We both have #MCAS. Neither of us can go outside, we're allergic to the sun, we're allergic to most foods, definitely to alcohol, and we both have chronic pain and fainting symptoms. We don't take things for granted, because we're trying to survive. 3/
Read 7 tweets
Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread:
6 years ago, I was a young, healthy, active person when I got a virus. 1/8
#MECFS #postCOVID
The virus itself wasn’t a severe case. I was never hospitalized from it. 2/8
#postCOVID19 #MyalgicEncephalomyelitis
Read 9 tweets
If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch
– we would understand the relationships between #MECFS #EDS #MCAS #POTS #Fibro, without which we will never be able to get to *prevention*
– every GP/PCP would know each of these diagnoses cold and could refer you to...actual specialists
Read 6 tweets
Petra Klinge’s talk on tethered cord syndrome blew my mind. It‘s given me a deeper understanding of how tethered cord syndrome might play a fundamental role in the patholophysiology and symptoms of a subset of #MECFS and #EDS patients. THREAD [1]
Tethered cord syndrome is a cluster of symptoms that develop when the filum terminale, a string of connective tissue that links the end of your spinal cord to your sacrum, is either inappropriately attached to your spinal canal or is too tight. [2] me-pedia.org/wiki/Tethered_…
This tethering exerts a downward force on your spinal cord. It’s why some neurosurgeons think tethered cord might predispose people to developing craniocervical instability/atlantoaxial instability (CCI/AAI) or symptomatic Chiari later in life. [3]
Read 51 tweets
I have been engaging with some people with functional neurological disorder (FND) diagnoses. FND is the new name for conversion disorder. They were upset about this thread and how it might stigmatize people with FND.
The last thing I would ever want to do is stigmatize other patients or disabled people. However, it's challenging to figure out how to talk about FND in a way that is not stigmatizing when misdiagnosis is *rampant* and *harmful.*
Furthermore, after digging into FND Hope’s website and list of symptoms (fndhope.org) I can only conclude that if these symptoms are being framed as FND symptoms and differential diagnoses of #MECFS, #EDS, #MCAS, #POTS...
Read 58 tweets
My husband and I both got sick with what we think was #COVID19 in late March. It took us each 2.5 months for our symptoms to completely resolve. It may take me, someone with a history of #MECFS and #MCAS, even longer to fully heal. Here are some things I’ve observed.
Our onsets were, at the time...odd. We never spiked fevers and had only “mild” lung symptoms. Our symptoms never fully announced themselves in the form of an acute illness but also took forever to go away. The flu is a thunderclap. This was more 2.5 months of daily gray, drizzle.
My husband’s illness began on March 22 with an upset stomach. Then, he started falling asleep for hours at a time in the middle of the day. At first, we thought it was a stomach bug. One day, he walked up a hill he‘s walked many times before. It winded him. His chest was tight.
Read 63 tweets
I don’t know how to get the word out about this. I am concerned about #MECFS patients who are a) having craniocervical fusions b) in Europe and c) are not actively engaged in patient groups on Facebook. [1]
My primary concern is that a significant proportion of patients who have fusions experience an initial improvement, but then have worsening symptoms roughly 5-7 months after surgery.[2]
In many cases, this is due to the “unmasking” of tethered cord syndrome, a condition many patients with craniocervical instability have. [3] me-pedia.org/wiki/Tethered_…
Read 76 tweets
I am going to write something that will be difficult to understand unless you have been unable to work, severely incapacitated, homebound, or bedridden due to a viral infection for 1-40 years. #MECFS
We (#pwme) are VERY scared for #COVID19 patients who develop chronic symptoms, and have been talking about it since January. We want nothing more than to help spare them our fate.
Yet––it is HEARTBREAKING to see some of the intense outpouring of compassion from doctors for these patients, the proactive (and appropriate) scientific curiosity.
Read 15 tweets
The “OMG, #COVID19 can cause long-term illness, possibly long-term disability, who knew such a horrible thing was possible?” articles stir in me so many mixed emotions.
I feel sorry for the people who are suffering from this and the uncertainty they face, especially those being gaslit by doctors or family members (apparently if you don’t snap back after two weeks, it’s “stress” or “anxiety”), or who are forced to go back to work too early.
I feel a sort of detached bemusement over how hard it is—for all of us—to pay attention to that which does not personally affect us, until it does. I have come to accept this as part of the human condition.
Read 14 tweets

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