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Jennifer Brea🦒
HCP ally. Filmmaker . co-founder. Disability rights activist. Harvard PoliSci/Stats Ph.D dropout. , ,
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Jennifer Brea🦒 4h
I’m exhausted by what we all have to go through. Misdiagnosis is not rare. I wish that it was.
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Jennifer Brea🦒 5h
Replying to @LaFaverMD
Sorry, I also did a quick scan of the website you shared (thank you) and “functional cauda equina syndrome” definitely jumped out at me!
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Jennifer Brea🦒 5h
Replying to @LaFaverMD
Whereas Petra Klinge is saying, “Lots of people scan negative, but when you examine their filums with your eyeballs, you can see the lipomas and the taught, thick cord, and when we do pathology, you can see inflammatory changes and disorganized connective tissue.”
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Jennifer Brea🦒 5h
Replying to @LaFaverMD
So that would be different from, say, functional cauda equina syndrome? It sounds like your colleagues are saying scan-negative == functional.
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Jennifer Brea🦒 6h
Replying to @LaFaverMD
Proactive advocacy for FND alone will not change that. Only engagement with the communities most harmed, to understand the extent and the nature of the harm, can do that.
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Jennifer Brea🦒 6h
Replying to @LaFaverMD
Just know that neurology (and these diagnoses, whether conversion disorder, FND, FSS, MUS, etc) have left behind a scorched earth. Especially in other countries. This is why people are so upset. They have been harmed. The suffering and loss are profound.
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Jennifer Brea🦒 6h
Replying to @LaFaverMD
That’s wonderful. As always, effective treatment depends on accurate diagnosis. I am glad you have been help to get people the help they need.
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Jennifer Brea🦒 6h
Replying to @LaFaverMD
I am not sure that is responsive to the issue of FND misdiagnoses in EDS, which is unfortunately quite common. I suspect that timely diagnosis of tethered cord would help a lot. Do see Petra Klinge’s talk. I am curious what you make of some of the signs she describes.
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Jennifer Brea🦒 retweeted
MEAction Colorado 8h
Great outreach on post-viral from leading advocates and with key advice for
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Jennifer Brea🦒 8h
That’s certainly possible. I actually don’t have an IDO2 mutation, though. I do suspect that the restoration of function in my case is as the Boston Children’s Hospital folks described.
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Jennifer Brea🦒 9h
Replying to @LaFaverMD
...what my neuro‘s thought was possible. The interaction of those symptoms with MCAS made the picture incredibly confusing. I later learned this is very common in tethered cord, which runs in my family.
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Jennifer Brea🦒 9h
Replying to @LaFaverMD
Standard neurological practice misses diagnoses like these all of the time in patients with ME/CFS, EDS, MCAS, etc. My first conversion disorder and/or FND diagnoses came because of my asymmetric, waxing/waiting gait abnormalities, dystonia and other symptoms that did not fit...
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Jennifer Brea🦒 9h
Replying to @LaFaverMD
E.g., IIH w/o papilledema, occult tethered cord (obvious fatty filum w/ surgery but invisible on imaging), cerebellar tonsillar herniation only apparent on upright MRI, etc.
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Jennifer Brea🦒 9h
Replying to @LaFaverMD
Everything in this article should probably be on the differential diagnosis list: The challenge is that accurate diagnosis of these conditions require some fairly EDS-specific considerations. The conventional wisdom is generally not up to the task.
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Jennifer Brea🦒 9h
Replying to @LaFaverMD
“Positive” diagnostic guidelines are important, but unless that team includes people with expertise in those often missed differential diagnoses, it’s likely there are still important things being missed.
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Jennifer Brea🦒 9h
Replying to @LaFaverMD
I am sure you do, but there’s still a lot that you are missing in the space of “rare” neurological conditions that can cause clinical presentations that can really mystify neurologists.
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Jennifer Brea🦒 retweeted
Amy Proal, PhD 11h
Replying to @cstroeckw @jenbrea
8/ - when it comes to hypoxia, many pathogens can benefit from an already existing hypoxic environment (for example promoted by a tether) and add to, or stabilize the hypoxic environment
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Jennifer Brea🦒 9h
This is why I STILL wonder about ’s earlier preliminary finding, even though he has assured me he doesn’t put much stock in it!
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Jennifer Brea🦒 9h
However, that might not be the case in patients whose symptoms have a different cause.
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Jennifer Brea🦒 9h
The reversal of PEM in neurosurgical patients is pretty instantaneous, and so our assumption is that in them, the reversal of symptoms is due to a restoration of normal CSF and blood flow, IF surgery has achieved that outcome.
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