What I had *asked* #Neurology to do in fact, was to look again at my scans to double check for #Chiari malformation/ #TetheredCord and/ or #CSFleak - all of which are plausible given my enormous range of symptoms.
Computer said no. My scans were not available to look at.
Das Gesundheits-Magazin Ourbodies hat meine Geschichte erzählt, wie es so plötzlich zu meiner schweren Behinderung kam und es mir damit geht, mit Schwerpunkt auch auf Aufklärung zu #CFSleak nach Lumbalpunktion, #MECFS, aber auch ganz allgemein. Und mein coping (wenn es denn das überhaupt gibt bei ME) mit der Kunst und unser Projekt, mit dem wir mehr awareness schaffen wollen.
https://ourbodies.at/suechtig-nach-leben-in-einem-paralleluniversum/
#Introduction 
Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others.
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! #BackThe1in6 #Dysautonomia #POTS #pwME #MEcfs #CSFleak #Stenosis etc
https://campaigns.mssociety.org.uk/page/106592/petition/1
@bennessbWhat's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISVoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx
Hi! I’ve never done something like this before, but it’s #IDPwD so why not? My name is Kathleen, and I’m disabled. I’ve got #hEDS (that acts suspiciously like vEDS), #POTS, #MCAS, #SevereAsthma, #CSFLeak, essential tremor, occipital neuralgia…the list goes on and on. You can read about my recent neuro/vision struggles in the Nerve Block Saga link in my profile. This is an Amazon wishlist (also in my profile), mostly for #disability related products, if you’re so inclined: https://www.amazon.com/hz/wishlist/ls/19RHSTWOMQDQ0?ref_=wl_share
Hello! So excited to be here that I forgot to do an #introduction. I'm a former lawyer who fell into a new career as a food & travel #writer. For 10 years, I traveled the world, & wrote (& ate!), with bylines at NatGeo, CNN, The Guardian, BBC, & more, until a lumbar puncture left me with a chronic #CSFleak in 2017, & #disabled.
I now write about curiosity, health, & loss. For more about my story please see my site, Legal Nomads, or this piece: https://edition.cnn.com/travel/article/jodi-ettenberg-legal-nomads-csf-leaks-wellness-cmd/index.html
During this time one of the weird side effects I developed was sudden adult-onset central heterochromia -- that is, my eyes changed color. So strange. (These are both me. My eyes were solid dark brown until about age 28.) The color change is permanent. My vision is back to normal.
