Lily Rose Health · @Persephone
136 followers · 258 posts · Server mastodon.me.ukWhat 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.
#neurology #Chiari #TetheredCord #CSFleak #mecfs #NeuroME
Bendy~hEDS & Co 🥄👩🏻🦼😷 · @bendyhedsandcoawareness
47 followers · 53 posts · Server mastodonapp.uk#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.
#introduction #eds #HSD #pots #oi #mcas #mecfs #CSFleak #SIH #BoneSpurs #Stenosis #CCI #TMJ #on #crps #sfn #NEISvoid #LongCovid
Bendy~hEDS & Co 🥄👩🏻🦼😷 · @bendyhedsandcoawareness
49 followers · 57 posts · Server mastodonapp.uk
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
#backthe1in6 #Dysautonomia #pots #pwME #mecfs #CSFleak #Stenosis
Bendy~hEDS & Co 🥄👩🏻🦼😷 · @bendyhedsandcoawareness
49 followers · 57 posts · Server mastodonapp.uk@bennessb
👋What'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
#eds #HSD #pots #oi #mcas #mecfs #CSFleak #SIH #BoneSpurs #Stenosis #CCI #TMJ #on #crps #sfn #NEISvoid #LongCovid
Riley · @RiledUp
1 followers · 4 posts · Server mastodon.world
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.
#heterochromia #tbi #neuroscience #optometry #iih #pseudotumor #shunt #VisionLoss #CSFleak
#heterochromia #tbi #neuroscience #optometry #iih #pseudotumor #shunt #VisionLoss #CSFleak
Lily Rose by the Beach · @Persephone
70 followers · 132 posts · Server mastodon.me.uk@CyruxiME I have my suspicions that I may have a #CSFleak which may date back to a botched epidural I had in 1995. I would be very loathe to let anybody fish around inside my spine and potentially make it worse. But I wish doctors could acknowledge that something is physically wrong in there instead of dismissing it as 'functional'.
#pwME #MEcfs #NeuroME #MEspine
#CSFleak #pwme #mecfs #NeuroME #MEspine