Autism, Hypermobility Type EDS and ME/CFS
Hello, I wrote an article about how autism, joint hypermobility, ME/CFS and mast cells could be related. TL;DR: People with hypermobility type EDS have 7.4 times the risk of autism, according to a...
View ArticleSimple home-made neck traction device that may mimic the professional...
Home Made Neck Traction Device to Mimic Invasive Neck Traction Neck traction (cervical traction) is a mean to diagnose craniocervical instability (CCI). Those with CCI will usually experience a...
View ArticleNew Facebook Group for Chiari, CCI, AAI, Tethered cord, etc.
Hi all, I just wanted to share a new Facebook group for Chiari, CCI, AAI, Tethered cord, etc., It is an offshoot of an existing group that has already grown to its optimal size. A contingent of...
View ArticleEDS patient struggles with opioid withdrawal—finally discovers LDN
https://www.latimes.com/ The sweet, clean high of Vicodin, I will never forget. That exalted sense of optimism and quiet elation, the release from the troubles of life. Peace. For years I needed it. I...
View ArticleLooks like another CCI case has made news
https://www.google.com/amp/s/www.da...sease-diagnosed-condition-dislocate-neck.html
View ArticleLooking for EDS specialist in Germany
I have a diagnosis of CCI/AAI from Dr. G. I am slightly hypermobil (4/9 of Beighton Score). Seeking to get a proper diagnosis, whether EDS is part of my issues or not. Does anyone know an EDS expert in...
View ArticleDoes an EDS diagnosis actually help at all?
Functionally, what's the difference between knowing and not knowing? Assume you don't have one of the major types that can lead to really bad symptoms and shortened lifespan. I could see how knowing...
View ArticleUnderstanding jugular venous outflow disturbance
I just wanted to share an article that was recently posted to our Facebook group on ME/CFS and structural diagnoses. A woman in it who meets ME/CFS criteria was recently diagnosed with bilateral...
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My MRI images for CCI/AAI/Chiari/tethered cord
I just had my upright MRI completed and I was wondering if anyone could offer some insights I have numbness and weakness all over, but it is worse on the R side (along with fatigue, insomnia, GI...
View ArticleLooking for info on CCI/AAI diagnosis in Australia
Hey guys, just wondering if CCI/AAI are being adequately diagnosis and/or treated in Australia yet? I'm in Brisbane and it's something I'd like to bring up with my doctor because I do get neck pain,...
View ArticleEDS/connective tissue disorders....bay area resources
Wondering if anyone has seen anyone they would recommend for EDS diagnosis or connective tissue disorder diagnosis in the bay area? would really love to have this either ruled out or in. thanks so...
View ArticlePossible tethered cord, has anyone had TC release surgery?
I suspected prior to my ACDF that I probably had a tethered cord due to EDS. I have markedly more pain in my lower spine plus an increase in other symptoms. My NS wants to wait a few months before we...
View ArticleNew study to try to identify a genetic marker for hEDS
... New study to try to identify a genetic marker for hEDS
View ArticlePrevalence of hEDS in POTS/ march 2020/ USA
Abstract Despite well-established clinical associations between Hypermobile Ehlers-Danlos syndrome (hEDS) and postural orthostatic tachycardia syndrome (POTS), the precise prevalence is unknown. We...
View ArticleSurgery CCI/AAI with Dr Patel at MUSC
Hi! Has anybody done fusion for AAI/CCI C0-C2/3 with Dr Patel? I am a candidate for surgery and wonder how he does the surgery? Does it differ from Dr Bolognese/Henderson/Gilete in regards to invasive...
View ArticleLittle fingers- do you have a bent joint or defect in them?
Hi All, I was just wondering if anyone has a bent joint or defect in the little finger. Mine are both bent and defects in the little finger can be a sign of a genetic condition Apparently due to...
View ArticleScoliosis
Does anyone have Scoliosis? I believe it's contributing to this illness. Im also closely looking into neck instability as I have many symptoms of it.
View ArticleExtremely Soft / Weak Neck Muscles?
It seems to me that many people who have problems with their neck complain about stiff neck/ muscle tightness. However it's the opposite with me. My neck has become unusually soft that can't be...
View ArticleHas anyone noticed significant changes in their collagen? ( Vascular, Skin,...
Ever since getting sick my collagen seemed to change rapidly but most notably my veins. My whole entire life I've considered myself to have healthy, normal veins. However after getting sick my veins...
View ArticleEosinophils and their role in Connective Tissue Disorders, Autonomic...
There has been increasing research on the role of eosinophils and connective tissue disorders. The eosinophils main role is fighting off parasitic infections, however they also play a huge part in...
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