Still thinking about how during an appt with an interventional radiologist he asked “did you academically struggle as a child or get diagnosed with like… ADD?”

I said “actually yes, when I was young I did struggle and was diagnosed with ADHD”… He went on to say “I have a hunch you’ve actually been struggling with a brain blood flow problem your entire life… your blood vessels didn’t fully develop to what we see with healthy controls” (thanks genetics!)

IMO, this snip is one of the most important parts of the round table.

#mecfs #longcovid #eds patients NEED more research into #mcas and its impact on connective tissue

https://twitter.com/tessfalor/status/1768725537868919197

“The chronic and systemic inflammation that happens results in a degradation of connective tissue, really no matter what”

Tethered spinal cord… released #longcovid After learning from the #MEspine #MECFS community and their experiences post-viral, and many learning they have a connective tissue problem, I hit the ground running and well… here I am.

I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons. Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.

Still processing the fact that I might need surgery at the base of my skull because of Covid degrading my connective tissues. Basically my C1 vertebrae is seen on imaging obstructing my jugular vein. Doc said that inflammation from covid caused tissues/ligaments to become weakened thus making my C1 shift and obstruct the jugular 🙃