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Jennifer Brea
Filmmaker . Tweets cinema, disability and occasionally screams from bed. Wife of . /
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Jennifer Brea 3h
Replying to @SueHoogie @FNDAus
Pretty immediate but I do not recommend. Traction should be done safely, e.g., with a PT or doctor.
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Jennifer Brea 3h
Replying to @neopronoun
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Jennifer Brea 4h
Replying to @SueHoogie @FNDAus
Except the jaw clenching part...any thought on what that might be? That’s controlled by the trigeminal nerve. Do you ever get numbness in your face?
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Jennifer Brea 4h
Replying to @SueHoogie @FNDAus
So...that all screams brainstem. I think a lot of FND diagnoses are probably related to some kind of brainstem problem, especially if it resembles locked-in syndrome. Can you move your eyes?
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Jennifer Brea 4h
Replying to @SueHoogie @FNDAus
Both. In my case, the technology to diagnosis has existed since the early 1900s, just not the curiosity or skill of observation or prioritization of the health of women:
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Jennifer Brea 4h
Replying to @SueHoogie @FNDAus
What do you mean by mute? That you have expressive aphasia (brain can’t think of words), that you can’t say the words (a problem of volition) or that your mouth can’t move because you are paralyzed head to toe?
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Jennifer Brea 4h
Yeah, I wish I could...I don’t know quite how to do that w/o a hospital bed...any hints?
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Jennifer Brea 4h
Replying to @SueHoogie @FNDAus
So, so, so much gets missed. Neurology and neuradiology are in deep crisis. I’m not sure they know it, but I think the patients know it.
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Jennifer Brea 4h
Replying to @DianeOLeary
Because I really want to team up with to launch this campaign, but it is going to be a gargantuan lift, and right now I probably have a spinal fluid leak, so I did the next best thing, and started a hashtag
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Jennifer Brea 4h
Replying to @jenbrea
It’s because even Dr. Laura Boylan *recovered* following brain surgery, this article doubts her, the doctors doubt her, and she is called “blunt and confrontational” for fighting for her own survival
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Jennifer Brea 4h
Replying to @jenbrea
Because it’s in the moments that, in the face of great pressure (and often against my better judgment), I did comply with the standard of care, I ended up in the three worst medical crises of my life
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Jennifer Brea 4h
Replying to @jenbrea
Because it’s only by being that so many of us were able to find accurate diagnosis, avoid “care” that might cause us harm, and find treatment that actually fit the bill.
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Jennifer Brea 4h
I think the new disabled people’s hashtag vis-a-vis the medical system, and especially re: disbelief and misdiagnosis of women/POC/LGBTQ should be
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Jennifer Brea 4h
Yes, this. It was sad that this was, fundamentally, the frame.
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Jennifer Brea 4h
Replying to @netflix @LisaSandersmd
*functional disorder. Excuse the autocorrect! Anyway, you have a major platform. It would be incredible if you could address this problem head-on. It would require deep perspective-taking vis-a-vis actual patients. Neurologists are getting *so much wrong*
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Jennifer Brea 4h
Replying to @netflix @LisaSandersmd
I hope Ann finds her actual diagnosis. She made the right choice.
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Jennifer Brea 4h
Replying to @netflix @LisaSandersmd
I was diagnosed with conversion disorder and was mostly in bed or in a wheelchair for eight years. I had craniocervical instability and tethered cord syndrome and recovered after surgery. It only took airing my MRI on PBS. I lost eight years. Others have lost decades.
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Jennifer Brea 4h
Replying to @netflix @LisaSandersmd
The vast majority of women with ME/CFS, POTS, hEDS are at one point or another misdiagnosed with anxiety, FND, or conversion disorder. This a massive problem and this was a missed opportunity to address the major problems of FND head-on.
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Jennifer Brea 4h
Replying to @netflix @LisaSandersmd
Differential can diagnosis can never be a defensible process so long as the accurate diagnosis is never considered among the possibilities. You reach FND by method of exclusion, having never considered the correct answer.
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Jennifer Brea 4h
Replying to @netflix @LisaSandersmd
And yes, it is a catch-all. Any diagnosis made in the absence of objective evidence is a catch-all. The mind is a powerful thing, mind/brian dichotomy, etc. are often handwaving in the face of the failure to diagnosis.
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