CranioCervicalInstability @CranioUnstable
My entire adult life has been a daily struggle with #cervicalspine instabi(ity symptoms, and now totally disabling and untreated #CCI and #MECFS. Please help! United States Joined June 2023-
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Connecting the Dots: Ruhoy and Kaufman Take on Connective Tissues in ME/CFS, Fibromyalgia and Long COVID “I think more about connective tissues than anything else these days“ @RuhoyMD Must read by @CortJohnson 🧵 healthrising.org/blog/2024/04/2…
@ChronicResearch @RuhoyMD @asktheallergist @julierehmeyer @LauraAPace @nataliepthomas7 @vonSaltza 2/ Transcript finally up for NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar event.roseliassociates.com/me-cfs-researc… Speakers included @ChronicResearch/@RuhoyMD/@asktheallergist/@julierehmeyer/@LauraAPace/@nataliepthomas7/@vonSaltza #CFS #PwME #CCI #EDS #MCAS #MEspine #hEDS
WHY DO HAVE A PERCENTAGE of ME/CFS patients present with CCI and/or TC? There are only a handful of doctors & neurosurgeons in the world who address this question, but there are many affected. #MEspine #ME #LongCovid #Lyme #CCI #AAI #ConnectiveTissueDisorder #EDS @RenegadeRes
WHY DO HAVE A PERCENTAGE of ME/CFS patients present with CCI and/or TC? There are only a handful of doctors & neurosurgeons in the world who address this question, but there are many affected. #MEspine #ME #LongCovid #Lyme #CCI #AAI #ConnectiveTissueDisorder #EDS @RenegadeRes https://t.co/oxBIbmaVL0
Today! Free webinar with a neurosurgeon who listens. Spain's Vincente Gilete MD is star of @RenegadeRes 1pm EDT Clinician's Roundtable, #medtwitter & pts. CCI, Chiari, TC, Syringomyelia, spinal instability & deformation, esp + connective tissue disorders. us06web.zoom.us/webinar/regist…
Kyle here: Does anyone know a San Diego based PT (or other doc) that can examine Dianna in-home for hyper-mobility and/or Cranial cervical instability? Any leads would be much appreciated! #MECFS #LongCovid #mcas
This is an excellent opportunity to discuss the topic #CCI #MEspine Dr. Gilete is the only one in Europe who has years of experience. Unfortunately, in Germany, not anyone has an open ear for it. Although many are affected. #Roundtable @remissionbiome @SitAtTheTable @tessfalor
This is an excellent opportunity to discuss the topic #CCI #MEspine Dr. Gilete is the only one in Europe who has years of experience. Unfortunately, in Germany, not anyone has an open ear for it. Although many are affected. #Roundtable @remissionbiome @SitAtTheTable @tessfalor
MCAS Intro🧵⬇️ A common but often overlooked 🧩 in subsets dx #fibromyalgia #ME #CFS #FND #EDS #Postviralsyndrome #lyme #LongCovid A common comorbidity to #craniocervicalinstability #tetheredcordsyndrome & more #MESpine #pentadsupersyndrome Treatments for these remain scarce 🌎
MCAS Intro🧵⬇️ A common but often overlooked 🧩 in subsets dx #fibromyalgia #ME #CFS #FND #EDS #Postviralsyndrome #lyme #LongCovid A common comorbidity to #craniocervicalinstability #tetheredcordsyndrome & more #MESpine #pentadsupersyndrome Treatments for these remain scarce 🌎
So I've got q a query for #PwME. I've been struggling to hold my head up. It feels too heavy and my neck feels so weak and painful. Has anyone else had this? In 2007, I was dropped out of a hoist and damaged my neck, so it's always been weaker but I'm at a loss of what to do!
Having to cope and trying to manage everyday with incapacitating pain & illness is extremely hard. And its another heavy blow when others lose interest and stop supporting because my health conditions aren't getting better 💔 #CCI #Dysautonomia #MEspine #EDS #MEcfs
We can improve this database if you participate on it, on treatments and their effectiveness to Craniocervical Instability #MEspine stuffthatworks.health/craniocervical…
#mespine Some of my cranio-cervical measurements. Suspected CCI. Grabb-oakes : 5.93mm Clivo-axial angle : 142.89 degrees Basion-dens interval : 4.26mm Basion-axial interval : 8.5mm
HHS officials at CFSAC used to beg our patience. Research takes time. That was more than a decade ago. Browsing through #CFIDSChronicle, I find article after article of leads we still don’t have answers on. Here’s another, from a quarter century ago. #MECFS #LongCovid #mespine
You’re invited! Fri, 3/15/24, 1pm EDT A Clinician’s Roundtable by @remissionbiome with David Kaufman, MD, internist who helped w ME/CFS consensus recs in Mayo Clinic proceedings & Ilene Ruhoy, MD, neurologist + an environmental toxicologist Register us06web.zoom.us/webinar/regist…
Here’s my #MEspine comment; it’s quite general, no time for more sadly but if you want to upvote “Please put actual money on issues like CCI, TC, EDS, and MCAS”, I got you covered. ninds.ideascalegov.com/c/idea/33090
Remembering ME activist (& my friend) Robert "Bob" Courtney, who passed away on March 7, 2018 This is from the @MEAssociation magazine One can read about some of the specifics of Bob's work here: me-pedia.org/wiki/Robert_Co… #MyalgicEncephalomyelitis #MEcfs #CFS #MyalgicE #PwME #ME
Good news if you needed a little more time: NIH just extended the deadline to Monday March 11 at 5pm Eastern! #MESpine
Thank you, #neurosurgeryBlog for spotlighting our article on classification schemes for #craniocervical junction disease. BLOG: neurosurgery-blog.com/archives/18249 ORIGINAL ARTICLE: pubmed.ncbi.nlm.nih.gov/37503952/ #neurosurgery #neurotwitter
@ErinSandersNP @IsabelRamirezRD @Really_Richelle I agree with everything you've said. :) I'm trying to collect info about what might be helpful for people that they can do from home if they have the #MEspine conditions, like your Doxy hypothesis or physical therapy. I'm imagining that even for people who would be surgical…
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It's my four year anniversary of ME/CFS remission. I'm doing well. I'll write a post on this soon. This journey has been complex. People's journeys can be different.
@CranioUnstable The human body stops making our own spike proteins that glue cells together when there is too much viral spike protein. Boron 6 mg plus erythromycin 250 mg is what Nature makes to chop and blow up spike protein.
@CranioUnstable Probably hitting the vagus nerve. Something drs in mainstream are not taught about. I took wife to a vagus nerve specialists and he don’t even know what all it controls 🤦🏼♂️ anyhoo I just posted a webinar in your pinned post. Check it out, it’ll hit home to ya. Blessings!
@CranioUnstable Dr Guillermo Vasquez... he's a freaking genius. Has it so dialed in he can tell you how your body will heal and when (called retracing). It's something most people don't understand but trust me I'm going through it right now. Absolutely amazing life changing stuff
Privilege to observe and film my first craniocervical fusion surgery at Mt. Sinai South Nassau @MS_SouthNassau in New York this past week for @4mmfilm. Here you see my neurosurgeon, Paolo Bolognese with his physician assistant, Phil. #MESpine #EDS #LongCovid #MECFS #MCAS
CW: Medical/hospital pics in next tweet. I was recently in Barcelona for a month for tethered cord release surgery, and testing regarding CCI/AAI/ venous occlusion etc. Surgery went well, and was a success! We travelled by train, so that I could recline in my wheelchair ... 1/2
@CranioUnstable No doubt. So sorry to hear. Sent you a DM.
@CranioUnstable Yes , severe breathing problems. My exhale whistle/wheeze seems to originate from my throat area and I still can’t find relief at all. No allergy , asthma, steroid medication has worked. This started two months after a TC release. Like I’m in a perpetual asthma attack.
@CranioUnstable I think this is because of the phrenic nerve, which enervates the diaphragm, can be compressed in someone with cervical instability, especially subaxial instability. This has become life-threatening in some rare cases of EDS.
@CranioUnstable I have diagnosed Cranio Cervical Instability (not treated) and heavy breathing problems, also POTS, MCAS etc.
@CranioUnstable from the GFM: "The priority is to get Jake housing while exploring other alternatives that require a waiting list, and lots of documentation to get this done." Jake has a lot of support from our @remissionbiome community now. We will help them get to a sustainable place. We…
@CranioUnstable Then get some 10% testosterone topical gel and rub it on your neck to rebuild muscle. Later get the antihistamine clemastine or 1/2 of 0.5 benztropine to regenerate myelin and white matter fiber bundles. It worked for me - and I keep with the program ... at least once a day.
@CranioUnstable You just have to stick with it long enough. Boromycin works like a circular saw. For longterm instability you don't have to take it like I did 3 times a day... you can skip days if it bothers you. It works best on an empty stomach. It works on all viral junk.
@CranioUnstable Boromycin ( take 6 mg Boron with 250 mg uncoated or chopped film-tab Erythromycin) 1-3 times a day to chop and excrete the body burden of Spike protein that causes our own human Spike protein to be down-regulated. Without our own spike proteins our whole body comes unglued.
@CranioUnstable You can be completely free of your symptoms. This is your brain and nervous system at work here. Not your body. Your nervous system is actually trying to protect you from something it sees as dangerous. Look up Nicole Sachs, Alan Gordon & Rebecca Tolin. Free yourself. Many have.
@CranioUnstable Dr. Fraser Henderson is an expert in this area well known by the EDS population I support, and has taken many of our Cdn patients as well. Terrible conditions with so few skilled practitioners. Wishing you all the best. metropolitanneurosurgery.org
IMO these findings provide further rationale for trialing @NervgenP's NVG-291 in #LongCovid/#MECFS/#MEspine patients with damage to the CNS. Phase 1b/2a trial planned for traumatic SCI, but reason to think it may be useful for neuro damage of any etiology. biospace.com/article/nervge…
A major piece of medical research came out this week: It is now *confirmed* that spinal cord injuries can suppress immune function. This explains why patients with spinal cord injury are prone to infections, & may lead to insight into #LongCovid. medpagetoday.com/neurology/gene… 1/
@hrefnask ! Interesting! An author of this infamous #mespine study: ncbi.nlm.nih.gov/pmc/articles/P…
The book is finally out! UCI faculty Drs. Ed Kuan @ekqibajiu , Hamid Djalilian, Harrison Lin, and Rush rhinologist Bobby Tajudeen @BobbyTajudeenMD , working with @SpringerNature , assembled an incredibly comprehensive guide to the art of skull base reconstruction. @UCIrvineHealth
The Lives Interrupted Project for ME/CFS, Fibromyalgia, Long COVID, POTS, and Lyme Disease is Here! Was your life interrupted by these diseases? Tell how in the LI project #MECFS #LongCOVID #FM #POTS #Lyme healthrising.org/blog/2023/06/2…
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