Discover and read the best of Twitter Threads about #dysautonomia

#SmallFiber #Neuropathy in #PostVac #LongCovid
I have those symptoms since 2014 - nobody ever took that serious 😭

Quote:
„Since the advent of the COVID-19 vaccines, neurologists Dr. Diane Counce & Dr. Suzanne Gazda have been seeing many novel neurological manifestations …1/x

https://twitter.com/drloupis/status/1651530346003853312

among their patients.

Counce said a common neurological complication she sees is peripheral neuropathy. These are diseases that affect neurons outside of both the brain and spinal cord (‼️) - including nerves in the internal organs, limbs, and skin.
2/x

Among them, small fiber neuropathy is the most common.

Small fiber neurons detect pain and temperature, hence why small fiber neuropathy is often associated with tingling, numbness, pins-and-needles, and burning sensations.
3/x

Read 6 tweets

Sparrow

@UntoNuggan

[food]

I've been doing some more research on "why does my body sometimes just start violently rejecting basically every food" and my mystery hypoglycemia

And I wanted to share some of what I'm learning about inflammation (eg from MCAS), the autonomic nervous system, and enzymes

As ever, I will probably need to take intermittent rest breaks while writing this thread

First off, what even are enzymes

Enzymes are handy little chains of amino acids, and life forms like humans, plants, and bacteria all have them

Enzymes are basically used to convert one nutrient into something else our bodies need

Read 54 tweets

Joe Black 2.0

@JoePhilosophe

🧵Let's make it known tomorrow how badly we need and deserve urgent drug development, and in the interim, emergency drug repurposing for #LongCovid. /1
@calirunnerdoc @D_Bone @JoshuaPribanic @cjmaddison @PutrinoLab @dbdugger @inducekarmaaa @drclairetaylor
fda.gov/drugs/news-eve…

For starters, @US_FDA needs to be made aware how many meds, supplements, and treatment protocols we have tried with little/no improvement. For starters, at the very least, they absolutely must address #Dysautonomia and exertion intolerance as roadblocks to PT/rehabilitation. /2

Second, we need help NOW. While drugs are being developed, let's talk about urgent repurposing of bold pharmaceutical interventions like antivirals, immunotherapies, monoclonals, etc. Let's begin a list of existing drugs we want made available for immediate use in the replies. /3

Read 7 tweets

Dysautonomia Intl.

@Dysautonomia

.@Dysautonomia President Lauren Stiles and other patient advocates are quoted in this article exploring what the @NIH has done with $1.15B in US taxpayer funds allocated to #LongCOVID research. 1/🧵

muckrock.com/news/archives/…

Dysautonomia International advocates serve on several RECOVER committees & have been fighting hard to get the NIH to spend these funds on research that is urgently needed to develop more effective treatments for people with #LongCOVID (a majority of whom have #dysautonomia). 2/🧵

While there are some great people involved with RECOVER, RECOVER as a whole has failed to deliver & is hampered by excessive bureaucracy, lack of accountability for decision making, and NIH's failure to put experienced post-viral illness researchers in leadership roles. 3/🧵

S Blitshteyn MD, Dysautonomia Clinic

Marat Fudim, MD MHS

@FudimMarat

‼️Reduction in cerebral blood flow (CBF) is found in various forms of #Dysautonomia and leads to a broad spectrum of symptoms such as dizziness, fatigue, shortness of breath, all the way out to syncope. Yet, CBF is often not monitored.
pubmed.ncbi.nlm.nih.gov/27525257/

sciencedirect.com/science/articl…

We tested the feasibility of a novel continuous monitoring of external carotid blood flow as a proxy for CBF using a novel in-ear device. An in-ear wearable device designed to measure blood flow and more. @HopkinsMedicine @VUMC_heart Tandri, Tripathi

The device provided near-continuous data on eCBF both during baseline and during periods of syncope. Moreover, changes in the external carotid blood preceded syncope during tilt by several minutes. The in-ear device may improve the sensitivity or maybe even replace tilt testing?!

Read 4 tweets

@dysclinic

This is a highly relevant study from Japan on #Dysautonomia, #gAchR antibodies and #FND!

I'll explain why it's important and what it means in clinical terms. 1/🧵

#MedTwitter #NeuroTwitter @Dysautonomia

frontiersin.org/articles/10.33…

@Dysautonomia What the study found:
✅ Out of 59 patients who qualified for #FND diagnosis by DSMV criteria, 88% had autonomic symptoms!!!
✅ 27% were positive for ganglionic acetylcholine receptor antibody (gAchR Ab) via LIPS assay.
✅ 50% had #POTS.
✅ 50% had orthostatic hypotension.
2/🧵

@Dysautonomia Why is this important?
✅ Our patients are often misdiagnosed with #FND, and this study proves that.
✅ When #FND is diagnosed, treatment is psychotherapy & physical therapy, which is not a treatment for #Dysautonomia.
✅ We MUST identify and treat #Dysautonomia symptoms.
3/🧵

Read 4 tweets

Kitchen Magician

@RoboNeen

I'm 1 of 50 million Americans living with an immune system that mistakenly attacks/damages healthy tissue (rude). During #AutoimmuneAwarenessMonth we strive to promote better understanding of these complex chronic conditions. Follow me as I share my journey this month.

2) It takes an average of 4.5 years and 4 physicians for patients to recieve an autoimmune diagnosis:
-Many conditions mimic others
-Lab tests are not always definitive
-Symptoms flare and dissipate frequently
-Diseases often appear in clusters
#AutoimmuneAwarenessMonth

3) This is me at 32, a month before I woke up 1 day + couldn't walk. Days later I couldn't bend my fingers. Bilateral pain/swelling + fam history of #rheumatoidarthritis prompted labs. Sky high CRP, ESR, rheumatoid factor sent me to a #rheumatologist.
#AutoimmuneAwarenessMonth

Read 47 tweets

Jorge Álvarez Troncoso

@joraltron

#Dysautonomia
Autonomic Nervous System (#ANS) Impairment
#Thread #midjourneyartwork #MedEd

1/🧵
#Dysautonomia is a condition that affects the ANS, which controls involuntary bodily functions, such as heart rate, blood pressure, digestion, and breathing. It can be caused by various factors, including #autoimmune diseases & viral infections like #COVID19.

2/🧵
The symptoms of #dysautonomia can vary depending on the underlying cause and can include lightheadedness, dizziness, syncope, rapid or irregular heartbeat, low blood pressure, gastrointestinal issues, difficulty breathing, and fatigue.

Read 13 tweets

„Wie ein grosser Tanker, im Blindflug, bei Gegenwind, im Dunkeln“, so beschreibt @ProfSchieffer die Lage.
#Covid #LongCovid #NotReCovered

@Karl_Lauterbach‼️Empfehlenswert ist dieser Vortag‼️@starkwatzinger anzutaggen macht ja gar keinen Sinn🥲 1/4
➡️

https://twitter.com/sibylle_berlin/status/1628712627055521796

„#LongCovid macht das Gleiche auch, was Corona macht, es macht diese Dysbiose, es zerstört über autoimmunologische Prozesse Zellbarrieren,Organbarrieren, es macht Hautstörungen, es macht diese Gefässveränderungen,die #Microclots und es macht eine generelle Nervenschädigung“🥲
2/4

Fatale Langzeitfolgen. Überlappungen mit #MEcfs #Dysautonomia #SmallFiber #POTS #MCAS u.v.m

But good to hear that @ProfSchieffer quotes Hanna Davis et al @ahandvanish #TopolPaper. One of the most comprehensive papers out there on #LongCovid 3/4

nature.com/articles/s4157…

Read 4 tweets

Shannon “Don’t Spread the Plague” Barnsley

#Putrino #Webinar #SolveMEcfs

#LongCovid ist ein Überbegriff, für alle Erkrankungen, die sich durch eine #Covid Infektion manifestieren. #MEcfs ist eine von vielen! #Putrino hat darauf hingewiesen, dass man nicht auf Biomarker warten muss, um #LongCovid zu diagnostizieren.
1/x

https://twitter.com/plzsolvecfs/status/1628101173751480323

#Putrino hat auch darauf hingewiesen, wie wichtig es ist, jetzt zügig Untergruppen zu benennen, z.b #POTS #SmallFiber #Dysautonomia #ConnectiveTissueDisorder & natürlich viel mehr, um gezielter zu forschen.

Wir haben bei #LongCovid EINEN Auslöser und VIELE Erkrankungen. 2/x

Aber auch bei #LongCovid gibt es Risikofaktoren (nein, keine psychischen, die haben in dem Webinar keine Rolle gespielt #Henningsen), sondern die Frage, was passiert, wenn eine #Covid Infektion bspw auf jemandem trifft, der/die #EDS hat?
3/x

Read 7 tweets

Neuro Sjogrens

@NeuroSjogrens

#Dysautonomia damages ur body's automatic pilot (AP) system that controls where blood goes, how food processes/moves, temperature & glucose regulation, BP, HR,sweating etc. W AP damage there is no homeostasis, no "static" issues. Problems shift & change & r unpredictable.

#Sjogrens commonly has #AutonomicNeuropathy. Most patients have lost the ability to predict how one feels day 2 day. Hr to hr. Even minute to minute sometimes. The days of predictable baseline function are gone for many #NeuroSjogrens patients.

Loss of this baseline functionality in #NeuroSjogrens #dysautonomia erodes ability to follow thru w plans. Steals ability to work full time or at all. Wears on friends/family. Eventually many are left disabled, unemployable, poor, alone & sadly unrecognized by MD's 4 many yrs.

Read 5 tweets

@ShanBarnsley

Millions are missing
And the cooper’s wife is too
So we hold our silent vigil
For a girl in a gown too blue
Lost in halls and hospitals
A silver talisman bears true
The diagnosis they doubted
With “Maybe it’s just you?”

“Maybe it’s your fault
Did you ever think it might?
It sure looks like anxiety
Caught in fight or flight
This isn’t an emergency
I’ve no time to spare tonight
For another hypochondriac
Who thinks her Google search is right”

The words echo again
We’ve heard them all before
Generations of us girls
Lost to fable and to lore
Seal wives and fae women
Changelings left by the door
You wouldn’t hear our screaming
So now you’ll hear our roar

Read 15 tweets

Maria

@marialavis

“I now think of #COVID as a neurological disease as much as I think of it as a pulmonary disease, & that's definitely true in #longCOVID,” ~ Dr William Pittman, @UCLAHealth

My daughter is a medical comms specialist — her colleagues did the illustrations. scientificamerican.com/article/long-c…

“the COVID-causing virus, #SARSCoV2, can
reach the brain and other parts of the central nervous system. This contact may lead to
persistent and devastating symptoms of long COVID, which--more and more scientists
say-appears to be a neurological disease.”

Long COVID can present as #dysautonomia, impairing the autonomic nervous system, which controls “unconscious functions such as heartbeat, breathing, sweating & blood vessel dilation”. For many, “dysautonomia takes the form of postural orthostatic tachycardia syndrome, or #POTS.”

Read 10 tweets

Joe Black 2.0

@JoePhilosophe

The few times a day I climb our tiny staircase, when finally upstairs, I'm gasping for breath, my chest cavity sore and tight, and my lungs feel unable to fill or empty completely. This lasts for hours.

I used to bike and climb mountains with ease. #LongCovid #NotRecovered /1

https://twitter.com/Bradgolf1216/status/1624364031661248514

"Exercise" for me is climbing a small flight of stairs out of necessity or walking from one room to another. When I do this too many times, imagine feeling like your head is spinning, your chest is seizing up, and you can't catch your breath. /2

https://twitter.com/Bradgolf1216/status/1624485244471476224?s=20&t=_kTYfNT6HuuCZr4AN6QbHA

For those still suspending disbelief about #LongCovid I challenge you to try to remain upright and functional for five minutes while feeling like you are experiencing a cardiac event. /3

https://twitter.com/Bradgolf1216/status/1624508175289397249?s=20&t=_kTYfNT6HuuCZr4AN6QbHA

S Blitshteyn MD, Dysautonomia Clinic

Heute mal ein Tweet über #Lyme #Borreliose.
Warum komme ich drauf?

Weil @ProfSchieffer es gelegentlich anspricht in seinen geduldigen Interviews. Wie auch zuletzt in der ARTE Reportage über #PostVac (die leider monatelang rum lag vor Ausstrahlung) - hier der Ausschnitt. 1/x

Borreliose ist eine tückische Erkrankung, oft übersehen und falsch behandelt. Auch hier erleiden Betroffene eine Psychologisierung vom Feinsten, wie mit allen multi-systemischen Erkrankungen. #Gaslighting. Borreliose kann ausserdem fast alles ‚imitieren‘. 2/x

Viele Krankheiten, die den „Autoimmunerkrankungen“ zugeordnet werden, gehen nachweislich auf eine Infektion mit Borrelien oder den Co-Erregern (wie zum Beispiel auch Bartonella, Babesien, aber auch Herpesviren u.v.m) zurück. Borreliose kommt selten allein. 3/x

Read 13 tweets

@dysclinic

On biomarkers: Patients with #Dysautonomia have preload failure. Invasive caridopulmonary testing or cardiac catheterization proves it. I just had a patient with post-Covid #POTS who had the tests done to rule out heart disease. She had no CAD, but did have preload failure. 1/🧵

Her excellent cardiologist @FudimMarat identified the problem and correctly diagnosed it. His findings were consistent with Dr. Systrom's study on preload failure. 2/🧵
onlinelibrary.wiley.com/doi/10.1086/68…

This patient was fortunate: she wasn't dismissed because her 2D cardiac echo & 24-hr Holter monitor were negative. Many patients with #Dysautonomia and #LongCovid are simply discounted as anxious or deconditioned when their routine cardiac & neurologic tests are unrevealing. 3/🧵

Read 5 tweets

Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇮🇳🇬🇧#pwLC

@doctorasadkhan

To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n

Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n

There is the well-known example of multiple sclerosis. Many deemed it psychogenic because there was no lab or radiology test that was diagnostic. Until of course the MR scan was invented. 3/n

Jurika 82 pflanzt🌳für Aufklärung über MECFS

„Ed, 16 Jahre alt, Pflegegrad 3, leidet infolge seiner Corona-Infektion an Long Covid und einer besonders schweren Form von ME/CFS – dem chronischen Fatigue-Syndrom. 1/x

ksta.de/koeln/me-cfs-1…

Das bedeutet: Ed hat keine Energie mehr. Nicht zum Aufstehen, er kippt ja schon beim Sitzen weg. Nicht zum Lesen, nicht zum Zähneputzen, nicht zum Denken. Während seine früheren Klassenkameraden sich aufs Abitur vorbereiten, ihre ersten Partys schmeißen und sich zum ersten 2/x

Mal verlieben, kocht Eds Mutter ihm die Möhren extra weich, damit er sie ohne allzu große Anstrengung kauen kann. Die Ärzte können bei Ed das chronische Fatigue-Syndrom zwar diagnostizieren. Eine wissenschaftlich anerkannte Behandlung empfehlen, können sie aber nicht.“ (…) 3/x

Read 13 tweets

@Tussipowerx3

#MECFS

Ein Sammelthread um sich über diese neuroimmunologische Multisystemerkrankung zu informieren.

1. #MECFS ist NICHT psychosomatisch!

2. Hauptsymptom ist #PEM (Post Exertional Malaise) = Belastungsintoleranz

3. Es gibt verschiedene Ursachen:

z.B. vorangegangene Viruserkrankungen (Grippe, Infektionen mit EBV, SarsCov-2 …),

#FQtoxicity (Flourchinolon-Vergiftung)

Unfälle, OPs, nach Impfungen (#PostVac)

4. Es gibt (bisher) keine Heilung.

5. #Pacing ist die oberste Divise.

weitere Infos?

cfs-aktuell.de
me-kollektiv.de
fatigatio.de
mecfs.de
cfc.charite.de