CSF's mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related disorders.
With a strong foundation in scientifically-sound research and the passionate involvement by volunteers, medical professionals and everyday heroes alike, CSF continues to be the go-to organization for children and adults who have been diagnosed with these conditions.
We are built on leadership, vision and a commitment to find a cure, because we believe that no one should have to endure the pain of these disorders.
Dr ... Is a general internist of private practice in Rockwell Maryland, he has been interested in the joint hyper mobile syndromes and related autonomic sleep disorders since 1990s and speakers regularly on these subjects in local and national meetings, including the eds society and....sorry idk good luck! If i was on my pc it would be much easier
Captions alright next we have a guest speaker from he came all the way from Rockwell Maryland he was nice enough to agree to let me intrude on his time off...
SNPs in IL12RB2 has been linked with Lupus, and IL12RB2 has been shown to bind and to regulate JMJD3 which is responsible for demethylation of H3K27. Could Il12RB2 be the link between inflammation and the epigenetic landscape? Mice models with iL12RB2 Knock out (KO) develop spontaneous autoommunity with systemic lymphoid infiltrates and characteristics of systemic vasculitis as seen in Lupus and Sjögren's syndrome.
The next video scrolling down is MCAS,POTS,EDS triad. Do other people have these issues in conjunction with each other? I HAD ) past tence), MCAS, and some joint -cartilage issues, blurry vision in the mornings and some vertigo at times getting up to walk, and tinnitus(ear ringing).
Urinary frequency, nighttime urinary frequency, insufficient bladder emptying, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Dystonia, double vision, fuzzy vision, non-epileptic seizures, spasicity, sharp shooting electrical pain in arms and legs, weakness, Scoliosis, hEDS, chest pain, tachycardia, heart fluttering, gasping, hiccups, spasms, deviated uvula, mild to moderate disc degeneration, sensory processing disorder, high functioning autism and 'superior' intelligence (tested by psychologist) in cranial cervical instability (?), leg weakness and more symptoms in my 21 year-old daughter. Thinking to start with a visit to see this doctor, rather than someone to strengthen ligaments in the neck...possibly the foundation is the problem which is causing pressure at C1-C2. L-2-L3; L-3-L-4 are dessicated. Im not sure all the terminology is correct or my remembering of the mri terms. She has done physical therapy, but when the pt doctor pressed on her mid back when there is a twist in her spine, it caused a full day of episodes (POTS-like weakness, then non-epileptic seizures that she let make her pass out...if she rearranges her head to a central position as the seizures weaken, she stays conscious and the seizures contiine. When she doesn't pull her head back to neutral, she passes out and the seizures stop.) She also has muscle twisting and passes out in her sleep, waking up feeling exhausted, blue lips, weak. Sometimes she has to try to waken herself up to 4 or more times.
I wish my doctor would acknowledge the obvious diagnosis of EDS in me or at least send me to a Dr that can diagnose . I have had physical therapist and other specialists tell my doctor that I am hyper-mobile. He just said he didn’t think I had it or at least not the vascular kind . But yet I have a paralyzed diaphragm and my blood pressure has been high . I’m extremely anemia and he hasn’t sent me to a hematologist, even though. I have had 2 iron transfusions in a year and half
I have syrinx from 1974 car accident: the twisting of my spine destroyed every disc and created 6 slipped vertebrae; by 2007 the doctors put me on hospice; Three years later I stopped going to doctors, worked out my own plan, burst the cyst, straightened my spine, and have a wonderful life! No picnic! But my cyst continues to drain (2024) and I've developed a home method of chiropracty to keep my spine aligned.. I wish doctors would listen to real life solutions!
2002 I have many tests and finally an MRI. 3 Doctors my MD, a neurologist and a neurosurgeon. Now living in a whole new area. They did a MRI and said I do not have it???? Is that possible? I continue with symptoms. Muscles, headaches, neck pain is horrible. 5cm Balance, I can’t walk a straight line for nothing. And fall easily. Help! New mri is coming up, how can I ask my doctor to look for Chiari? Can it just disappear?
My pains started in 2019....I was told it's carpal tunnel....but as of last year I've had muscle atrophy and weakness of the left arm/hand/fingers (ape hand) with 7mm tonsillar herniation and syrinx from c1 to th9 ...syringomyelia was diagnosed April 2024.
This was intresting. My geadaches had gone on since age 8. Told.migraines. saw Neuro and was diagnosed with IH in 2001. Went into remission. MRI in 2011 (chiari found, no one told me) then symptoms got worse in 2019/2020. I was passing out while sat or led down. I was concious but my body was fitting , burning through my body, when my son shook me i came too. I could hear him crying (age9) screaming at me to wake up. Felt sensation of wetting myself but didnt. Neuro couldnt tell what that was. UK nhs is great but when you have something like this, no one tells you anything. I had no idea my neck pain/migraines were to do with chiari. Surgeon said its not bad enough to operate. I had no idea until now that all my "fibro" symptoms could be realted to my chiari
When you say finding a Dr to work with is "a problem for all of us" please know that what you're actually confirming is that it's a problem trying to find a Dr who is committed to healthcare, not the medical industry, and has the respect for patients to listen and believe that our experience is real, that we're smart enough to research on our own when Drs abandon us, and that we are the MOST reliable witnesses to our physical health, not the most unreliable witnesses. And that we are there seeking ATTENTION to our health, and DRUGS that we know are safe and effective FOR US. And we may very likely know this information better than you do. The medical industry has caused more bias-based harm than we'll likely ever know, because Drs are insulated and protected from being held accountable or liable for that harm. The ones harmed are aggressively silenced.
Very informative. I wish my Drs would take the time to hear it. Yes my living situation and mattress are big contributors to my sleep deprivation, pain, and disautonomia problems. What's the plan, where are the folks who give money to disabled people in the US to find more accommodating environments, buy healthy mattresses and pay for all the health aids to compensate for medical neglect and abandonment. Who's funding bite guards that cost $800-1000 WITH INSURANCE?Just wondering because I keep trying. This is killing people, and that IS harm, just in case the medical industry isn't aware.
Thanks SO MUCH! Any update’s are appreciated as it’s saying on googling that it’s MIA3 gene variants/mutations that may cause hEDS and as You explained so many of us are hanging on the edge of the seat for the study to progress. Hot prayers for all interns, Who go on to achieve great things for the community. ❤
In Australia the surgeons all cover up each other’s mistakes and use patients like none human Guinea pigs and I am one it destroyed my life my family. I have no love in my life anymore.
Anyone recommend a good Rhumatologist in UK 🇬🇧 im struggling very much , just awaiting to be diagnosed with Ankylosing Spondylitis as hla b27 and have all symptoms and sacral pain. But just looked on medical patient summary report and says Muskoskeletal Connective Tissue Disease in 2014. I was never told nor referred.
I have heard about Heart Rate Variability testing for ANS dysfunction for decades. How is it not mainstream by now? That tilt test is barbaric when positive.
