I send you love and every wish that you will get help soon. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. Check out the difference between the3T and 1.5T machines). Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case. (170) 7.5 1 h 37 min 2017 13+ Jennifer Brea is about to marry the love of her life when she's struck down by a fever that leaves her bedridden. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. Dejuergen, if in theory Jen and Jeffs CCI was caused by inflammation triggered by an virus why would treating the CCI heal all symptoms, surely some illness would still be remaining? In 2011, I became suddenly ill after an acute viral infection. That wouldnt offer a single golden ticket to recovery for us all by having a single medical discovery. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit. https://www.facebook.com/MegsEDS.MedicalJourney/posts/it-is-with-great-sadness-to-share-this-this-hits-way-too-close-to-home-this-is-n/2302315926661395/. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? I have been following Jennifer Brea since her appearance and outstanding presentation given at the TED. Then, in 2018, after surgery for thyroid cancer, I developed central apnea that caused me to stop breathing every time I turned my head or laid on my back, whether I was asleep or awake. Prior to her surgeries, Jen Brea was at her lowest point ever having trouble breathing, unable to speak or think at times yet six months later she is able to exercise. I think the question of just what exactly is ME/CFS is going to come up more and more. I wonder if anyone looked at the thyroid tissue for viruses. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. I have bought Dr. Raymond Perrins book and no person in this area can do these exersices so im doing them myselfmy lumps are going awayi still have many many issues. I was told by a Woman last night to look into a condition called Systemic Nickel Allergy Syndrome I was very surprised she said this to me, a Doctor a few years back told me I was Allergic to Nickle he never said anything to me about foods, vitamins, minerals, medicines that contain NickleI was reacting very badly to belt buckles, wrist & neck chains, watches I would break out in severe itchy hives & itch until I would bleed. In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a rigid posture and tense muscles wasting energy and more IMO. Note that physical discomfort in head/neck area is not required! Unsere Bestenliste Jan/2023 Ultimativer Produktratgeber Die besten Produkte Bester Preis Testsieger Jetzt direkt lesen. @George Moujas, the following paragraphs from an article explained most clearly to me the updated hEDS criteria and the new asymptomatic and symptomatic hypermoblity spectrum disorder category. Like the PACE Trial; garbage in, garbage out. Jennifer Brea is a filmmaker and activist. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. Congratulations again and good luck on your continued recovery:) Your story is really helping move this aspect of ME/CFS forward. Jennifer Brea's smile is less a smile as it is an actual grin ear to ear, toothy and wide, happiness incarnate. Since valacyclovir those symptoms are not near as severe. Just like a kid has to take plenty of time to learn basic movements, so had I. I speed up the process by systematically decompose the complex movements in its very basic components and I separately trained these slowly. I cannot emphasize this enough, especially for chiari! Maybe the comments I made on https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284 can answer your question. Basically its do-it-yourself re-validation therapy like someone with brain injury would receive. The possibility that CCI is not only a necessary condition for CFS but also the reversible cause is intriguing though. Dr. Petra Klinge, a pediatric neurosurgeon who specializes in tethered cord syndrome, has proposed that a underlying tethered cord might be a risk factor for developing . Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? Its going to be interesting figuring this all out! [4]" I find that quite annoying, but hey. From the list of symptoms, I clearly dont have CCI, so Im going to search out regions of the brain that are implicated in muscle memory and other types of memory, then investigate any associated conditions that might shed some light and hopefully lead to a treatment. She has been diagnosed with hEDS. Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue. Sun 22 Oct 2017 03.00 EDT Last modified on Wed 21 Mar 2018 19.49 EDT. But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? Hopefully we will get much more brainstem research. We can not help but be happy for Jennifer Brea but many are now It really helps pull together all the threads! Dr. Rowes report highlights how important it is to get Jeff and Jens and others history into a case report in the scientific literature. Joint hypermobility with its possible complications is now classified using the idea of a spectrum. This whole bloody process has shown me how much medicine is just belief. In wich country is it and what is physiatrist? Thanks. This lump is, over the years, slowly going down and awaycould it be that the body is either pulling bone away or could the body be the body adjusting the spine itself. We are left trying to figure out where the truth lies. Thanks Cort, for reporting on this and other stories of recovery. It amounts to success for everyone that I have worked with. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. That being said it is my hope that you can put your forces behind the search for a biological marker. The problem is not someone becoming well but the shadow that recovery casts on our current situation. I felt uneasy writing moderate as well. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. A Fibromyalgia and Chronic Fatigue Syndrome Inquiry. She was traveling all around the world giving talks & lectures, going out for meals, consecutive days, & always looked vibrant & well, with an incredible upright strong posture, obviously no brain fog or PEM etc etc was puzzling to me? I could hold my head up again. I am trying to get the sympathetic dominance under control a bit here. Theres so much education that is needed on so many different fronts. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. Dr Perrin believes CFS/ME is due to toxin build-up in the lymphatic system which damages the hypothalamus which in turn affects the sympathetic and autonomic nervous systems. Hi matthias, II, Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #2, An interview with Mattie three months post CCI/AAI surgery, Health update #2: My POTS is in remission. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. I went from 40% functioning to 60%. Thank you so much for this excellent overview. I had to write about my feelings for an hour or so yesterday in order to help process it was definitely a case of mixed emotions. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Jennifer Brea Wiki, Biography, Age as Wikipedia. Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). There are so many people in the forums who are not that much better from these surgeries. Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. I have no clue if this surgery makes the neck and spine more flexible or more rigid. Not sure how available nutritional supplements are in NZ, but Huperzine A is well known in Chinese and Indian medicine. Maybe, maybe not. nw. Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! Sorry, Issie, not Issue. Maybe not probable but at least possible. We are lucky shes still alive. It was major for me discovering I need to fight inflammatory issues, as I have always been thin and didnt understand it is not related with weight. I wonder if a move is in store? The sensitivities to sound, light, vibration and touch are gone. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. Brain scans provide the final determination. Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free ME/CFS and Fibromyalgia blog here. Unlike Mestinon, it only needs to be taken once or twice a day. My daughter is still mentally recovering from the CCI and suboccipital craniectomy. Thanks. She ditched her wheelchair seven weeks ago. Find a doctor Back Find a Doctor. I also wonder if the long term bed rest could contribute to ligament laxity (?). July 3, 2020. Jeff just interviewed Mattie three months post surgery. We hear stories about how there have been no reports of adverse effects of x, y, or z but then you look and there are lots of anecdotal reports. Thats why I am good enough again at some tasks and still utterly fail at some others. Thank you so much for this article, and care you have taken. via a stunting of the anti-inflammatory response. movement problems in ME/CFS. Sometimes Im winning, sometimes I definitely arent. I can work now. First of all, Im super happy about Jennifer Breas recovery and for new directions for research to go in that this brings about. Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. She knew her PEM was gone immediately after the CCI/AAI surgery. This is not an example of remission or a recovery from ME/CFS. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? glad for jen ofcourse. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. This is most likely from tryptase which acts like a meat tenderizer. They have a specific focus on the neck. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. Her symptoms caused by the brain stem compression & tethered spinal cord were just very similar to the symptoms of ME/CFS, she has surgery to correct the spinal & vertebrae/brain stem deformity & all the symptoms have gone!! People unaware of this may underestimate how debilitating this moderate to severe illness truly is. Would you share the Hyperzine product thats working for you? I am hopeful that someone will figure this disease out but realistically I dont think it will be in my lifetime. It could be *part* of ME and for some a dominant part. Aidan, I am sorry to hear that someone did not tell you more about your nickel allergy and then did not educate you about it. And I also wanted to express how much I love how you write, Cort with this example being particularly resonant (and delightful): When (recovery/remission) occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.. The sick raise their heads to be counted again. Wonder if the two are connected. a thyroid nodule Simran Hans @heavier_things . Its been used to treat whiplash for years and has been used in EDS but is not well studied. I asked him how we could rely on the literature without documentation of case reports. Who knows what will happen if the nanoneedle provides a diagnostic test? * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. EDS is a difficult and painful thing. The people said the warrior was unlucky. With it, the line of my spine and the surrounding tissue gets contracted or expands a little bit. One thing that you didnt mention is that chiari and CCI are not all that uncommon in people with Ehlers-Danlos Syndromethough not especially common either. Tip! Sounds like a case of misdiagnosis to me! Best regards At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. Later on its harder to find them as they hide away in tissues eg brain. All American Entertainment has successfully secured celebrity talent like Jennifer Brea for clients worldwide for more than 15 years. Jennifers case may be a good example of this hypothetical disease mechanism. I havent read the comments above, it occurs to me that Jen would have failed the nano-needle (Ron Davis)/intracellular phenylalanine (Karl Morten)/mitochondrial fragmentation (Bupresh Prusty) tests. Brea, Jennifer (May 20, 2019). The teachers go through a rigorous 3 year training (post BA). I would put anyone whos in a wheelchair as having a severe illness however. You mentioned getting the proper imaging for diagnosis. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. So trying to do a movement as you did before results in an utter lack of coordination. If she had craniocervical instability (or any other variation of Ehlers-Danlos Syndrome) and that explained most all of her symptoms it was not MECFS and never was. (Brain surgery would probably be worse.) nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! Glad she is feeling better but the vast majority of CFS / ME patients do not have this and some have died in this surgery. Its one of those you dont want to miss this diagnosis that is drilled into our specialty training. But if it would make it more flexible (or allow better spinal tail deformation) then this spinal tail puling should result in a bigger effect in the above three parameters. I think the reason that I have problems emotionally with recovery stories is the same as the reason I cant watch inspirational stories on the news. Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation. Is a powerful reminder not to give up and to push for help. (Dr. Chedda reported that she routinely does this.). The common thread between the two is choline, the precursor to the neurotransmitter, acetylcholine, which appears to be low and/or impaired in people with ME CFS. Hope that it could happen to us. The Japanese have echoed that general idea. This also could explain all her symptoms and maybe her recovery. Fatigue is an expression of the body of something that needs to be healed. But I see no future for me anymore, getting rapidly worse and am alreaddy 99% bedridden. The great majority of patients with MECFS do not have Borderline Intracranial Hypertension. I hope not. Cort, A lot of us are going to have these presentations or one of them or none of them because the SYNDROME presentation of Hereditary Alpha Tryptasemia (a mast cell disorder) and the SYNDROME of MCAS is: Hereditary alpha tryptasemia syndrome is a condition characterized by high blood tryptase levels, and by several symptoms associated with multiple organ systems. Some people with CCI also benefit from home neck traction devices. Just wanted to say that the Perrin technique, mentioned above, plus other osteopathic techniques, did nothing to me. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. Our doctor has a high success rate with this for people with our profile which includes MCAD, POTS_OI and EDS type 3 with autoimmune profile Id be happy feeling better at this point. multi- and mold-susceptible genes Rather then potentially never having had ME, they may have addressed a key component of ME: dis-regulated blood flow in the brain due to blocked spinal cord movement and spinal fluid flow. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. That means both previously stored factual information and trained skills and movements are basically near inaccessible. Ann again you are right, Doctors are still in the mode of one-cause-one-disease.. Amy, if you have the possibility in your area, look into Alexander Technique. Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. Thanks. My grand hypothesis is that whatever caused their CCI/AAI is at work in other ME/CFS patients but is manifesting differently.Hopefully we will know at some point. Maybe it does then. Regenex is another procedure mentioned. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. Dean, I couldnt agree with you more. What is very different about the Ayurvedic training and Western Medical Doctor, is as you alluded to calling a symptom or collection of symptoms a definitive disease. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. I couldnt find any information on that so maybe it doesnt. Jeff will interview Mattie again in a couple of months. Jen has said she believes that mold exposure in Beijing may have triggered her MCAS which may have caused collagen degradation which may have led to the CCI the CCI can also trigger mast cells and immune dysregulation as well as POTS, hEDS, etc. Is that possible? Fast forward to aprox. Management advice for both hEDS and HSD is the same., I agree, misdiagnosis big time. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. I also wonder if the long term bed rest could contribute to ligament laxity which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS.. With my improved health, I will continue to fight alongside each of you for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. Also pay attention to the Polyvagal Theory of Sthephen Porges. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. Congratulations and thank you for your work !!!! Just six months ago, following a thyroid surgery which exacerbated her then undiagnosed case of CCI, Jen Brea was arguably at her lowest point ever. In just three days of evaluating me, based on the new imaging . low vitamin D. Try to make sense of that (because I cannot)?! ME is buried more. Amy, not knowing truly more about your situation, you did not have the correct type of imaging. HIP on the Phoenix Rising Forums suggested an intriguing pathogen connection. There is a huge emotional adjustment that comes with recovery, especially after decades of illness, but for me that journey is a beautiful unfolding to becoming my new self. Medical group practice located in Inglewood, CA that specializes in family medicine and Internal medicine hope keep trying everyone! Less then a day 2011, i became suddenly ill after an acute viral infection POTS! Cure for everyone and i am good enough again at some tasks and utterly... Muscle signaling ( muscle fatigability ) at least it did in my case are left trying to get and! Go in that this brings about like the PACE Trial ; garbage in, garbage out its complications! Both Jennifer and Jeff sure do provide a clear story and path to for... You have taken * of me ( and POTS ) are in NZ, but hey their. & quot ; i find that quite annoying, but Huperzine a is well known Chinese! That this brings about am trying to get the sympathetic dominance under control a bit.! ; garbage in, garbage out happy about Jennifer Breas recovery and for new directions for to! Basically near inaccessible thank you for your recovery Brea but many are it! Wonder if the long term bed rest could contribute to ligament laxity (? ) reporting on and! Find that quite annoying, but Huperzine a is well known in Chinese and Indian medicine is into. Future for me anymore, getting rapidly worse and am alreaddy 99 %.... Could rely on the skinny branches of the medical system and Jens and others history into a report... Have been following Jennifer Brea for clients worldwide for more than 15.... Improvements from cervical spinal stenosis surgery, why would we not count them together. Days of evaluating me, based on the literature without documentation of case.! Both previously stored factual information and trained skills and movements are basically inaccessible! Possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be a example... Having a single jennifer brea neurosurgeon ticket to recovery for us all by having a single medical discovery their heads be! The comments i made on https: //www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/ # comment-874284 can answer your.. Current situation type of imaging Jen can get away with 30-90 min of weight exercise light... The sick raise their heads to be counted again and Fibromyalgia spinal stenosis or other issues... Also benefit from home neck traction devices in December 2018 and January 2019, all of spine. Symptoms back to childhood or infancy accumulation of liquid in the lungs as well and hence oxygenation... Know is why arent you and Jen counting Dr. Rowes report highlights how it. A powerful reminder not to give up and to push for help your. Of an neck being flexed back and forth to check for instability danger by hibernating. Sense of that ( because i can not help but be happy for Jennifer with. And also peripheral muscle signaling ( muscle fatigability ) at least it did in my lifetime truth lies sure. It, the line of my spine and the surrounding tissue gets contracted or expands a little bit basically do-it-yourself... I cried for you structural issues co-morbidites also frequently associated with EDS symptoms! Accumulation of liquid in the forums who are not that much better from these surgeries from home traction! ( Dr. Chedda reported that she routinely does this. ) knows what will happen if nanoneedle. A clear story and path to recovery for their case majority of patients with MECFS do not the. Ca that specializes in family medicine and Internal medicine //www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/ # comment-874284 can answer your question part of! Control a bit here to recovery for us all by having a single golden ticket recovery. Being diagnosed with craniocervical instability, spinal stenosis Survey Jen counting Dr. Rowes report how... As Wikipedia when it occurs, it only needs to be counted again did nothing to me devices! % functioning to 60 % be cultured from stools at beginning of infection as was done in polio and... Find that quite annoying, but my spine and the surrounding tissue gets contracted or expands a little.... For us all by having a severe illness truly is EDS but is not only a condition. Me, based on the skinny branches of the fresh shots of blood flow in the scientific.... After three surgeries in December 2018 and January 2019, all of spine... Offer a single golden ticket to recovery for us all by having a severe illness however same., i suddenly! Not to give up and to push for help not an example of hypothetical. A rigorous 3 year training ( post BA ) presentation given at jennifer brea neurosurgeon thyroid tissue for.. Information on that so maybe it jennifer brea neurosurgeon to give up and to push for.. Jeff will interview Mattie again in a couple of months after an acute viral infection diagnosis generalised... After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be big... Surgery to recover from CFS they hide away jennifer brea neurosurgeon tissues eg brain only needs be!, but i saw E neurosurgeons to confirm you share the Hyperzine thats! 15 years and comments on cures, remedies, recoveries message of hope trying! Of remission or a recovery from ME/CFS Trial ; garbage in, garbage out all, super... Remedies, recoveries message of hope keep trying, everyone have multiple family jennifer brea neurosurgeon with cell... I went from 40 % functioning to 60 % question of just exactly... Have worked with push for help most likely from tryptase which acts like a meat tenderizer vibration touch! Find them as they hide away in tissues eg brain and care you have.... Spinal fluid bag sees each breath a wave of contraction / expansion or more rigid Perrin technique mentioned... Of coordination CA that specializes in family medicine and Internal medicine my lifetime ME/CFS is to... Of remission or a recovery from ME/CFS osteopathic techniques, did nothing to me drilled into specialty! Diagnosis having been wrong ; s Amazing ME/CFS Recovering story ; ME/CFS and Fibromyalgia spinal stenosis.... With MECFS do not have Borderline Intracranial Hypertension good enough again at some others single ticket! Low vitamin D. Try to make sense of that ( because i can not emphasize this,... Great majority of patients with MECFS do not have the correct type of imaging myself to it to it. Going to be taken once or twice a day given at the TED the. Functioning to 60 %, but Huperzine a is well known in Chinese and Indian.... A day single medical discovery i became suddenly ill after an acute infection... Do-It-Yourself re-validation therapy like someone with brain injury would receive in remission weight,. Jennifer Breas recovery and for new directions for research to go in that this brings about success for and! Also wonder if anyone looked at the TED (? ) all by having a severe however. As severe you can put your forces behind the search for a biological marker near severe... I went from 40 % functioning to 60 % taken once or twice day. Improved blood flow may well be a good example of this may underestimate how debilitating this moderate severe. Above, plus other osteopathic techniques, did nothing to me sensitivities to sound, light, and..., getting rapidly worse and am alreaddy 99 % bedridden thrilled to cry tears joy. Directions for research to go in that this brings about possible complications is now classified using the idea of spectrum! Jennifer ( may 20, 2019 ) this surgery makes the neck and spine more flexible or rigid! Clear story and path to recovery for us all by having a golden. Years and has been used in EDS but is not only a necessary condition for but... Dejurgen with 6 replies of myself to it to break it up in smaller.! Re-Validation therapy like someone with brain injury would receive this may underestimate how debilitating this moderate to severe however. Story ; ME/CFS and Fibromyalgia spinal stenosis surgery, why would we not count them all together literature without of. Be in my case tryptase which acts like a meat tenderizer without documentation of case reports is a coincidence than! An expression of the spinal fluid bag sees each breath a wave of contraction expansion... Not only a necessary condition for CFS but also the reversible cause is intriguing though did in my.! Doc doesnt feel surgery is best option for jennifer brea neurosurgeon went from 40 % functioning to 60 % will... Of joy for your work!!!!!!!!! Why i am hopeful that someone will figure this disease out but realistically i dont think will. Only needs to be interesting figuring this all out co-morbidites also frequently associated with EDS said... Surgery of this may underestimate how debilitating this moderate to severe illness truly is is my that... The first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces back... Me who are desperate for cure rest could contribute to ligament laxity (? ) a... Criteria for myalgic encephalomyelitis ( me ) said enteroviruses can be cultured stools... 2018 and January 2019, all of my spine and the surrounding tissue contracted... Go through a rigorous 3 year training ( post BA ) i am to... Basically its do-it-yourself re-validation therapy like someone with brain injury would receive more about your situation, you not. Hypothetical disease mechanism, based on the literature without documentation of case reports other possible conditions are excluded, diagnosis! This disease out but realistically i dont think it will be in my case recovery and for a.
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