Pattern of neck pain in CCI etc
My pattern of neck pain is as follows, I'm just wondering does it sound typical of CCI or chiari malformation etc, or if it sounds quite unlike it. Firstly my neck pain is like no other neck pain I've...
View ArticleThyroid hormone and collagen
This looks like there is a connection Would this be a potential link to people with collagen issues or connective tissue like issues who are not EDS?...
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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Vascular Compression: Summary of Discussions
I thought I'd start a thread to summarize the discussions about vascular compression and the relation to impaired collagen. Here's an interesting comment from another thread: SandigB said: This may be...
View ArticleBpc157 side effects.
D-- heard bpc does weird dopamine stuff tho like adhd meds wont work post-BPC A Ugh bro this meme is fucking with me Its said 5o apply to opioids and coffee , I need to fix my ligaments but I also need...
View ArticleAlternative Non-Surgical Possibilities for Addressing CCI/AAI or Other...
Important Update Post -- July 27, 2021 ................................................................... I've long felt my major health issues that led to ME/CFS started with a serious head...
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 ArticleSpinal MRI test results. I’m looking for advice.
I recently had a thoracic spinal MRI done. For five years or so my ribs have slipped out of place and are very visible uneven and the Dr thought that the problem might originate at my rib cage. I also...
View ArticleIn the hospital in nyc having bad flair post surgery. Need help , including...
Please help me. Do have one caregiver but caregiver is chronically I'll too. Hardest recovery I've ever done. I'm too in pain and sick to look at phone screen much or research but there are some things...
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 ArticleSelf measurement of CCI on MRI?
I feel like someone posted resources regarding this here, but can't find it. Any hints? I know this is a complex subject and I know about the only neurosurgeons on the planet who are able to diagnose...
View ArticleCervical spine stenosis?
I was hoping to see if any of you have encountered something like this. I had a neck MRI a couple of months ago, and was surprised to see I had cervical kyphosis and some disc issues - it does make...
View Articlemany patients with HSD/hEDS meet Fukada criteria for diagnosis of CFS 2021 UK
The article discuss also increased risk for ADHD and eating disorders in hEDS Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression...
View ArticleAre these symptoms sounding like connective tissue disease?
-I have mild pectus excavatum which is associated with connective tissue disease. -Loose skin -Slack/loose shoulders/shoulder ligaments. Physiotherapist told me but no dislocations. -I can bend my...
View ArticleAnyone identified connective tissue disease through whole genome sequencing?
It is almost impossible to get diagnosed where I live. Would be great if WGS would be a good way to rule out CTD?
View ArticleLink between craniocervical instability (CCI) and Dr Markov's bacterial...
Link Between CCI and the Markov CBIS bacterial dysbiosis theory of ME/CFS? Dr Igor Markov in the Ukraine say he has found the cause and the cure of ME/CFS: he believes ME/CFS is due to a chronic...
View ArticleCervical C1 PRP treatments in Canada?
Do they exist, has anyone been to a doctor who's treated it? In my city I've only been able to get up to C2.
View ArticleWhat’s the theory behind the connection EDS and ME/CFS? (Other than CCI/AAI)
I now suspect I had EDS all my life without knowing. I will get tested for it in a couple of weeks. I will also get an MRI of my brain and neck. I got sick from covid in april and I’m trying to...
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My ME is in remission
For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three...
View ArticleWashington Post Article: -- A doctor struggled with a rare, incurable...
A doctor struggled with a rare, incurable syndrome. Now she helps others overcome it. --... Washington Post Article: -- A doctor struggled with a rare, incurable syndrome [Ehlers-Danlos]. Now she helps...
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