Twitter Beğeni Hilesi

CCI UPDATE: ‼️ So after a bunch of extra imaging (MRI and CT scans) and speaking with Dr. Gilete, he was able to officially diagnose me with CCI (cranio cervical Instability), AAI (atlantoaxial instability), and OTC (occult tethered cord). I had a positive response to traction.

Erin Lee 🌻 Hannah Davis Cerebral spinal fluid issues often occur in conditions like craniocervical instability, atlantoaxial instability, intracranial hypertension issues (including but not limited to Chiari malformation), eagles syndrome, styloid induced neuropathy of the glossopharyngeal nerve 1/2

GC they will see you suffering, all signs point to hEDS, and the doctor will be like “hmm you are suffering too much for this to be just hEDS, it must be something ‘more serious’” but they are wrong hEDS is actually just very serious.

Severe #mecfs is never going to get the understanding it needs until the etiology is found. Which is why it is BAFFLING why there isn't more research into the one cause that's been found. If anyone knows what research is ongoing into #cci #aai and #tethered cord, please comment.

The comments! This is just heartbreaking.

I surrender. I’m going to start giving them my middle name when I order Starbucks.

I feel like anecdotally ppl w hypermobility are more likely to get longcovid. Is there data to back this up?

seeing an ⬆️⬆️ # of #POTS patients. Majority young fit women, severe compression of left renal vein, the right common iliac artery crosses over the distal IVC compressing it& they have severe bilateral upper extremity TOS with venous compression. Basically living with an empty ❤️

Andrue Lee We have a POTs protocol workup Venous insuffiency studies (legs) Cross sectional imaging and/pelvis Gonadal veins Evaluate for MALS Nutcracker SMA syndrome May-Thurner, but most the iliac actually is crossing higher and compresses the distal IVC Cervical cspine TOS testing

Just because it has come up recently. Please do not forget that quite a few of us folks with ME/CFS also develop CCI/AAI (craniocervical/atlantoaxial instability) along with it. It is just as ignored and dismissed by doctors as is ME/CFS. / #mecfs #LongCovid #cci #eds #marfans

The normal inflammatory immune response involves (temporarily) degrading connective tissue via enzymes. I'd bet money that, in some people, this response goes into overdrive and shreds the tissue to the point that secondary feedback loops begin - leading to widespread dysfunction

Patients with #MECFS, does your PEM start with a nerve tingling or weird pulling sensation in the neck and cervical spine that then radiates further down your spine into your arms and legs? Thank you!

An empty sella (or a partially empty sella) on an MRI can be a sign of intercranial hypertension, which can be a sign of structural conditions in #mecfs. See Jen's full story in this link, and the larger thread.

This paper on thromboinflammation is everywhere this week. Unfortunately nobody commenting on it seems to have read it! I have, and it definitely doesn't say what commentators are suggesting. 🧵nature.com/articles/s4158…

#MECFS24 Brayden Yellman MD. ME/CFS comorbidities. hEDS. MCAS. Relationship between these and others. Small fiber polyneuropathy. GI dysmotility. CCI and AAI. Tethered cord. Venous congestion syndromes. Intercranial hypertension. Amazing talk.

Exciting discovery: CSF flow isn't confined to the brain and spinal cord—it also extends to peripheral nerves! Science Magazine science.org/doi/10.1126/sc… Groundbreaking research from UF Health FLORIDA #neurotwitter #neuroscience #AcademicChatter

Boom! Cerebrospinal fluid (CSF) flow extends to peripheral nerves. Alexander Ligocki, Ed Scott and colleagues FLORIDA UF Health blow our minds. New paper Science Advances. What will we call it now? Cerebro-spinal-nerve fluid (CSNF)? or maybe brain-spinal-nerve fluid (BSN)? Just when