Jennifer Brea🦒 Profile picture
Mar 12, 2018 18 tweets 4 min read Twitter logo Read on Twitter
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
I said repeatedly I think I have too much pressure in my head, I need a lumbar puncture (less for diagnosis and more just to get some relief).
If I could wave a wand, I would make the following true:
1) This next generation of doctors would be taught zebras DO exist. If you can't diagnose your patient, the answer 9/10 is not that there is nothing wrong or that they're possessed by the usual convenient psychological spirits, but that you just haven't been able to figure it out
2) You can't possibly know everything and you shouldn't be expected to. But that also means your patient may know a lot more than you do. After all, they only have to specialize in one body and one clinical presentation.
So don't tell them what they are experiencing isn't happening. Instead, try to figure out *why.* The textbooks are not complete.
Lastly, and I know I've said this, but the ME/MCAD/EDS/POTS/Fibro/Lyme doctors and researchers really need to get together and figure out what is happening to all of us. They need to be trained to recognize potentially treatable co-morbidities.
This era of different diagnoses/research tracks/activist and philanthropic communities for patients with similar symptoms and similar treatments needs to end. We need radical collaboration and education.
We still obviously need dx-specific research, but when I rattle off to a Lyme doc my Rx's and he says, "Oh, those are the most commonly prescribed drugs in my practice." When an neurosurgeon says, "You look JUST like my post-viral EDS patients."
When orthostatic intolerance is in our #mecfs diagnostic criteria, but most patients aren't being properly evaluated for dysautonomia. When patients with the SAME onset, symptoms, presentation, response to treatment – in short, the same disease – are being given different labels.
When the ICC includes the hallmark symptoms of ME *and* hypermobility (#EDS?), food and fragrance intolerance (#MCAD?)...we aren't going to get clear on what is going on by simply sticking to our corners, trying to better define our boundaries.
We need boundaries, but I don't think we are truly going to be able to define them unless we take the dude with the ear, the woman with the tail, the guy with the snout, etc., and have an elephant-assembling party.
As someone who is the recipient of a huge volume of emails, I see patterns, connections and intriguing threads we MUST pull on. Internal heterogeneity is damaging to research. But so too is having people with the same conditions split across so many diagnoses.
And to anyone who is not a #spoonie reading at this hour, thanks for tuning in to what I'm sure is uninterpretable inside baseball. If you can, keep following and support us when you hear the call. Collectively, it's probably the fate of 100s of millions of people.
In case you're curious: a healthy person's MRI (right); my abnormal MRI and a pituitary pancake (left). Neurologists: do NOT believe a clean MRI report just because you get a clean MRI report.
And please stop diagnosing patients whose symptoms you can't explain with conversion disorder (hysteria). Thanks.

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More from @jenbrea

Sep 21, 2018
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
Sep 16, 2018
If you were going to frame an umbrella term to comprise related diseases like ME, EDS, fibro, MCAS, POTS, endo (and others), what would you call it?
Note: I’m not talking about a scientific umbrella. We don’t yet know enough to say that there’s an underlying biological relationship and if there is, between which diagnoses, and for what reasons.
We just know that these conditions tend to flock together, whether for scientific reasons or social ones (e.g., diagnostic uncertainty).
Read 12 tweets
Sep 12, 2018
I've had remarkable control or at least perspective on every single emotion I've experienced these last six years. I realize now it wasn't courage or astonishing emotional maturity. It was self-protecting resignation. It felt necessary in the face of neglect, disbelief, abuse.
It’s helped me achieve more than I ever imagined under some extraordinarily difficult circumstances. But survival strategies developed under duress usually, eventually outlive their usefulness.
I've started to experience what medicine can look like at its best. I’ve met doctors who think like scientists, but operate like detectives; who are that rare mix of creative, curious, skeptical, rigorous. It's allowed me to open myself up to hope and but with it, utter terror.
Read 17 tweets
Sep 2, 2018
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
Read 26 tweets
Aug 22, 2018
Guys, I just learned that *A LOT* of people are ableist. 😲
Institutionalized ableism? Check. Welfare spending, scientific research, the medical system, public access, hiring & employment, consumer design, the media. We don't even do the minimum rational, in everyone's self-interest stuff yet.
But then #Afflicted happened and I LOOKED INTO THE SOULS OF MEN.
Read 13 tweets
Aug 14, 2018
The heavy-handed (totally out of context) physician commentary on the cases of patients they have never seen or interacted with is so irresponsible. #Afflicted
I have *never* heard of some of the doctors commenting on Jamison's case. This means they don't regularly see ME patients, don't research the disease, and have zero clinical or research expertise. #Afflicted
They filmed at a Stanford symposium that included top researchers from around the world, yet decided to use totally unrelated, nonexpert interviews to comment on Jamison's case in order to convey a POV that fit their narrative. #Afflicted
Read 106 tweets

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