Jennifer Brea: I have craniocervical and atlantoaxial instability
My road to diagnosis is a story unto itself. I won’t share it here but suffice it to say that I was eventually diagnosed with craniocervical instability and atlantoaxial instability (CCI/AAI). My......
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joints falling apart.... what the heck do i really have!
i ve been having really bad pain in my shoulder/arm for way too long, finally got an MRI and found out i have a labral tear, a detached muscle and cysts. now this would not be super alarming except, I...
View ArticleWow an absolute wealth of information and promise
https://www.caringmedical.com/prolotherapy-news/chronic-fatigue-syndrome-cervical-stenosis/ wow this website is an absolute wealth of information and promise. There is so much to see... In detail...
View ArticleSubluxed axis (C2 vertebre) in neck confirmed. What now?
My axis (C2) is subluxed, rotated and misaligned. It was confirmed by supine MRI. I met a neurologist who think this is the root to my symptoms. She said I would probably not be a candidate for surgery...
View ArticleHypermobile EDS and Hypermobility Spectrum Disorders what is the difference
Hi, I have found this interesting presentation of Doctor Marco Castori who in my opinion is one of the best EDS researchers: And why is it important to a diagnostic. Kind regards, Nasaud
View ArticlePain at ends of ribs after mild mechanical stress
Firstly I'm not officially diagnosed with EDS, definitly not hypermobile but do have fairly stretchy and noticeably smooth skin, (everyone who has touched me says this without fail). I don't have...
View ArticleJeff anyone who have consulted with Dr Bolonesse ... help confused!
I called dr Bolognese office today to get all information I needed to get the ball rolling on the MRI and consult. I wanted to make sure that the order for the MRI was written exactly how he would like...
View ArticleSo confused again.
Here goes, long story. I havent been well for over 20 yrs and had every test imaginable so I got told cfs/me. I had a few brain scans over the years and all normal. I woke up about 5 hrs ago and went...
View ArticleCan you test for EDS without seeing a geneticist?
The process of finally seeing the geneticist to get the tests for EDS is a pain, to say the least. Apparently geneticists are so low in number that they throw up lots of barriers to seeing them,...
View ArticleThe Role of Cell Adhesion and Cytoskeleton Dynamics in the Pathogenesis of...
Interesting article https://www.frontiersin.org/article...TltN1Y3VK9XkSYQH6j9TVR-PbH1HxCQ37K3hdv9NC8#B2 Any possible pragmatic approach ?
View ArticleLactic acid injection fixes prolapsed spinal disc (back pain) by rebuilding...
This article details a study at the Stockholm Spine Centre in Sweden involving a single lactic acid injection, which is able to stimulate bulging (prolapsed, herniated) discs in the spine to repair...
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...
View ArticleDoctor recommendations please!
Who can I see for CCI dx and treatment? I'm in the Madison, WI area but I'm desperate enough to travel.
View ArticleHas anyone got a Digital Motion X-ray (DMX) to look for Neck Instability?
Has anyone got a DMX to look for CCI, AAI, or any other instability of the neck? We're you diagnosed with it or had to get other scans like an upright MRI to find it? I'm scheduled to get one soon....
View ArticleCusack protocol for EDS—reports from anyone trying it
I have hEDS and recently started this experimental protocol. It is not a cure but an ongoing treatment using 8 supplements. There is a Facebook group called Ehlers Danlos Syndrome and the Cusack...
View ArticleDoxycycline as a CCI treatment: low-dose doxycycline inhibits the MMP enzymes...
Summary: low-dose doxycycline 20 mg twice daily inhibits the MMP enzymes which are secreted by immune cells during viral infection, and which can damage connective tissue such as ligaments. So in...
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Q&A session on hEDS with Norris Lab
For those of you that are not familiar with Norris Lab, it is an research center at Medical University of South Carolina. They are working on finding a gene for hEDS. They have identified a strong...
View Articleweakness of the epineurium and perineurium surrounding peripheral nerves in EDS
@Hip maybe we should get a special attention at the collagen tissus surrounding the nervous system…(not only the ligaments and dura) https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajmg.c.31549...
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 Article#MEspine hashtag
Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI,...
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