#medstadon — Public Fediverse posts

Please share the above at conferences, health systems and clinics — so clinicians and researchers learn about these devastating impacts and can help patients

More people need to realize these are severely disabling and sometimes life-ending conditions if left undiagnosed, untreated and unfixed

Clinicians #MedStadon must build on patient-led research and seek out existing guidelines from the few clinicians knowledgeable, instead of waiting for medical institutions to tell them what to do

2/2 🧵

If you want to learn more about the recent @decodemestudy Myalgic encephalomyelitis study that found 8 genes associated with ME patients, join this free webinar on August 14 at 10:30 AM EST: https://us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration

#pwME #MECFS #MedStadon

Profoundly upsetting to confront how much time, money, energy and wellness I lost pursuing “migraine” treatments which all failed as intracranial hypertension issues caused and/or triggered nearly all of my head pain, yet doctors didn’t investigate it for 20 years #medstadon

People can also donate here:
Venmo: Emily_rj
CashApp: $ERoseJ
PayPal: emilyrjohnson

I’ll add any cashapps donations to my GFM fall neurosurgeries goal, ty 💜 https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

#MutualAidRequest #MillionsMissing #EDS #pwME #LongCovid #MedStadon #MESpine #POTS #MCAS #Mito

I have an infection so no energy to do many tweets like I have raising funds for others

$22K only covers neurosurgery care now — I may need more neurosurgery next year

Pls share if you can’t donate! #LongCovid #DisabledSocial #MedStadon #EDS #pwME #POTS #MCAS #LongCovid #MESpine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

A question for all the #medical #doctors out there:

Got an x-ray for a tennis elbow issue and I was surprised that the technician did not offer me any lead radiation protection thingies to put on my side and head while the elbow x-rays were taken. I inquired, and she said, "oh, we don't offer them anymore. we found that the lead actually keeps the radiation in the body longer" and I'm thinking, WTF?

Since when? Is there a peer-reviewed journal article on that?

#medstadon #radiology

🚨 So this is a call to neurologists, movement disorder specialists and researchers — if post-viral impacts on dystonia is your thing, please DM me

I need remote accessible care to give me (and my specialists) a better idea of what I’m dealing with and what to do #MedStadon 4/4

But because my EEGs are normal, it’s not epilepsy, my case hasn’t fit any neurologists’ clinical or research agendas

Loved ones and doctors just assume some other doctor (or a partner or boss) will fall out of the sky supportive enough to care — no dice #MedStadon 3/4

At times I think about how no neurologists have been very concerned my full-body sleep seizures over at least 14 years

It’s not epilepsy so no one is interested, I don’t know how often it occurs nor extent of damage, and talking about it stigmatizes me everywhere #MedStadon 1/4

My best guess is hypogenic paroxysmal dystonic seizures: happens during NREM, have normal EEG, features night terrors — all present in my case

It makes sense that’s it’s an extension of my #dystonia, not just neurospinal and neuroimmune damage — still scary #MedStadon 2/4

A firm Check Yourself to the 12 neurologists and neurosurgeons I saw the last 6 years who said I had conversion disorder aka hysteria, was psychosomatic, my spine didn’t need surgery

The US tethered cord expert just showed me the proof, I have TC, it’s obvious on imaging, I have needed spinal surgery #MedStadon

Since I first heard of tethered cord syndrome and how common it is with #EDS, I knew I had it

TC took so much from me in the last decade and ethically I shouldn’t have been denied surgery, but neurology/neurosurgery doesn’t know how to look for TC/OTC — please learn, #MedStadon

I’m relieved to say I was also greenlit for simultaneous lumbar surgery, which other surgeons also denied me bc “we don’t want to get involved”

It shouldn’t be on patients to get to the top expert — please surgeons, learn #EDS spinal care, we need you, this is awful

“I am speaking directly to our doctors, dentists, nurses, specialists of every kind, all our providers of routine and critical care:

In the absence of any backup from government officials, we need your help now. We need to be able to come into your offices for the checkups you always nagged us to keep up with — and we want to get.

As your patients, we need a professional commitment from you to practice good infection control.“ #MedStadon

https://www.latimes.com/opinion/story/2022-09-27/covid-cdc-masking-rules-hospitals

I’m going to need people to understand that doctors have connected vaccine side effects *and* injuries from the spike protein and AVV in Covid vaccines to #EDS and #MCAS

Please stop criticizing people experiencing legit issues and start listening and supporting research to help us, thanks

Research links in thread 🧵 #MedStadon

My cardiologist sent me this research he co-authored in 2021 for the American Heart Association

There’s immense overlap with #POTS #MCAS — this paper clarifies testing and clinical presentation myths vs realities

Any doctor can diagnose these conditions, and they both are common (at least 15% for POTS and at least 20% for MCAS, thanks to Covid issues), so learn the signs! https://www.ahajournals.org/doi/10.1161/JAHA.121.021002

#MedStadon #LongCovid

Anyone else have a GFR that’s consistently 30 to 40 years older than you are? Is there anything medical providers should be doing about this? #MedStadon #NEISvoid

From Lauren, a psychotherapist on Twitter:

“It shouldn't be hard to find a therapist who knows their clients' COVID fears are a rational and appropriate response to what's happening. But it somehow is, even after three years. So I made a directory to make it easy. Here's the link to join.”

Link live soon! #MedStadon #LongCovid #Covid #therapy

https://www.covidconscioustherapists.com/join

I swear I'm not high but this is some crazy parallel evolution right??

#science #medstadon #evolution #ITSSCIENCE #mariobrothers?!? #goomba? #goombasintheelevator #makinguphashtags #cantstopwontstop

@mollyjongfast hey, Molly. I wouldn't worry about which server. Take note of hashtags, though. #Medstodon #medmastadon #medstadon #longCOVID #LongCOVIDPhysio #LongCOVIDForum I don't think I've seen any public health hashtags yet.

@kcarruthers any specific location?
#Medstodon #medmastadon #medstadon