Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of...
I personally know of 2 people that for years had a CFS diagnosis and were finally found to have a chiari malformation and their issues resolved after minor surgery. The symptoms of chiari are almost...
View ArticleHave you noticed symptoms of Connective Tissue degradation since onset of...
I am curious at how many people have noticed this so am making a poll. This would include gums receding, skin getting wrinkly, joints feeling significantly more floppy, or any other similar symptoms....
View ArticleDiagnosed Cervical Instability
This is apparenrly much common than people think and most people with neck pain have some amount of instability. I just spent 7 hours yesterday having imaging done and going over things with the doc...
View ArticleGrowing CCI issues from a few weeks bedbound?
Hi all, I've been in the worst crash I've ever experienced for the last 3 weeks almost. I've gone from around a 20-22 functional scale, walking 2-3k steps daily but still lying down most of the day, to...
View ArticleQuestion about EDS
Does anyone know if EDS can occur at any age? Before becoming ill this year, I lived an active life doing things like mountain biking, hiking and jogging. I never experienced dislocations which I hear...
View ArticleCCI SURVEY – for all ME/CFS patients tested for CCI and related conditions...
Craniocervical Instability, Chiari and Spinal Stenosis Survey For ME/CFS patients diagnosed positive or negative for CCI and related conditions This survey is for ME/CFS patients who sent their MRI or...
View ArticlehEDS: the causal genetic mutation may have been identified!
If you have an interest in the inherited connective tissue diseases, such as Ehlers Danlos, then you probably already know that the hypermobility type (hEDS) has lacked a genetic marker for far too...
View ArticleCould someone help me make sense of this?
I’ve had someone look at my mri before and they told me a few things they saw, but I don’t remember what it was as I’m like partially demented. Can anyone here take a look at my upright mri, and tell...
View ArticleSleeping on the belly with head to the side - is it bad for neck issues?
Hi all, I like to sleep on my belly with my head either to the left or right side. It has never caused me any issues. Recently I’ve suffered a severe crash which I attribute to either accidentally...
View ArticleCCI / AAI / chiari / instability /neck evaluation by Dr Gilete
search4health said: @bombsh3ll I agree with you that this doesn’t seem likely and would be a red flag. I think you are correct in pursuing this question further and would be very interested in what...
View ArticleWhere to get CCI prolotherapy / prp: caring medical, centeno clinic or other?
Which is the best clinic to get it done? Anyone have experience with either? Is there any better one? Thanks
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View ArticleIM Vitamin C Injections for hEDS... anyone tried this???
I came across this woman's blog recently, in which she went from being debilitated and bed-bound most of her entire life to being fully functional, largely due to vitamin C injections....
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...
View ArticleSigns of Intracranial Hypertension, Hypermobility, and Craniocervical...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7485557/ Abstract The pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unknown. In this study, we test the hypothesis that...
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