That may point to more then coincidence.Looking at it this way, I see options beyond a differential diagnosis that can help part of the poorly diagnosed patients.
Essentially, this lifts the head upwards permanently via surgery. This caused brainstem compression and Craniocervical Instability to develop at this point, and was left undiagnosed for seven years.She became progressively more ill. By 2012, she became bedridden and was incorrectly told she had “conversion disorder.”She was eventually diagnosed with ME. After Dr. Klimas found that GWI and ME/CFS look exactly the same but are vastly different physiologically I think we should prepare ourselves for a variety of “M.E.’s” including the classic – an enteroviral caused disease.That all feels right to me too, Cort.
He thought this increase sympathetic tone. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. That being said it is my hope that you can put your forces behind the search for a biological marker.
Was your case that severe?My second question, is how does one get a proper diagnosis either way?
It was really hard to read…Apparently she had the surgery here – and then went to Dr. Bolonesse (sic) in Europe for followup surgeries which failed.The first surgery was done by the doc in NY and they tried to repair it in UK afterwards, according to one of her relatives email to me. 1,410 Likes, 139 Comments - Jennifer Brea (@jen.brea) on Instagram: “Thank you for the messages of support during my surgery! Then the opening in the foramen magnum gets smaller and some of the signals or the cervical fluid don’t get enough space. Would it be possible for you to follow De Meirleirs regime for some symptom relief while you wait for the world to catch up? )I had no other way of making any broader sense of this until a PT suggested that I look into EDS, as I met most of the criteria. By March, physical therapy wasn’t causing PEM, but instead gave her an endorphin rush.In March of 2019, she went into full permanent remission of POTS and announced this publicly. I left the office a bit disappointed-again-one more dead end rabbit hole and a heartbreaking concession that I’ll never ever get better. Through the Fibro Fog offers tips and tricks for living with chronic illness, as well as simple but delicious low histamine recipes.
You are right though Cort that it raises some difficult emotions.
Thank you.Hi R, did you mean that surgery to correct CCI/AAI did not cure your daughter of ME/CFS?
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CCI? Not sure whether he meant various Enteroviruses which have an affinity for the brain or more than one type of virus. (Recently I’ve come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear “cascade”. If he didn’t write it up, how many others didn’t either? One on her upper cervical spine, a craniocervical fusion, and two more surgeries in her lumbar spine.On November 28th, 2018 she underwent a craniocervical fusion.
Let’s instead spread realistic hope that there are answers, varied as they are, to our collective suffering.Well said, Michele Brown.
Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. Ken Anbender recovered from Another remarkable thing is how sick some people can get and still recover. Besides, if I could pick one person to get well – one person who, if healthy, could advance our cause the most – it would undoubtedly be Jen Brea. A couple of months later she’s still largely bedridden but is improving.Because these surgeries can take from 3-12 months to take full effect even in a healthy person, there’s no way to tell yet how much impact they will have on her ME/CFS, POTS, MCAS, etc. I imagine that would show up on the right kind of imaging. It is a cholinesterase inhibitor like Mestinon, available over the counter. The late Dr John Lowe and late Dr Gordon Skinner argued yes.I wanted to correct my last sentence. Jen Brea makes two people with severe, apparently classic cases of “ME/CFS” who have recovered or are recovering after being treated for craniocervical instability (and in Jen’s case, tethered cord syndrome).
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