Watching “Diagnosis” on @Netflix. One very not small thing for @LisaSandersmd: the reason so many patients hate a function disorder diagnosis is NOT because they think doctors are saying it’s all in their head.
@netflix@LisaSandersmd It is because most doctors a) actually do think the symptoms are psychogenic and b) it is often a misdiagnosis that can cause (mostly women) grave harm.
@netflix@LisaSandersmd I am heartened, though, that the episode did address racial and gender bias. I just wish that the focus was less Ann’s discomfort “she has low trust, she feels like...” and more the actual, rampant, systemic problems in the medical system that are killing women and POC.
@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.
@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.
@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.
@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.
@netflix@LisaSandersmd I hope Ann finds her actual diagnosis. She made the right choice.
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*
• • •
Missing some Tweet in this thread? You can try to
force a refresh
I’ve been getting more and more into skincare, and what’s so interesting about it is the overlap between the most popular topical treatments and what people with connective tissue disorders are trying (experimentally) to try to ameliorate major disorders. #MEspine
In the skincare world, some of the most popular treatments include ingredients like hyaluronic acid, Vitamin C, and GHK-cu (copper peptides), all of which #hEDS and #MEspine people are already taking in an effort to reduce joint pain or improve ligament strength.
What I haven’t seen much talk of in #hEDS/#MEspine land are microneedling, LED therapy (red and far infrared light), and retinols (especially tretinoin), which, from what I’ve seen, are probably among the most effective skincare interventions.
For #LongCovid folks taking Nattokinase, in addition to breaking down fibrin (potentially helpful for microclots) it apparently it hydrolyzes collagen fiber, which may not be good if you have a connective tissue disorder and could explain some adverse reactions.
There’s not a lot written about Natto and collagen (as compared to its effects on fibrin) but here is one reference. “Posterior Vitreous Detachment Induced by Nattokinase”
▶️ iovs.arvojournals.org/article.aspx?a…
@CovidCastaways And I think it’s possible this could happen if one is taking it over a period of time.
Just sharing @edyong209's excellent article on post-exertional malaise (PEM), a hallmark feature of ME and ubiquitous among #longCOVID patients. MD's, we can also experience fatigue but these are completely different things. My take? PEM is a neurological symptom...
The patients experience when their nervous system is required to produce energy under conditions of hypoxia (low oxygen), which is caused by hypoperfusion of the brain and/or spinal cord. There is a wide literature on metabolism under conditions of hypoxia...
In both animals and humans. We see things like elevated lactate and inflammation, both of which have been documented in ME patients in numerous studies. (So has hypoperfusion of the brain, for that matter!)
I went to a new sports medicine place. (Since Miami, I’ve started subluxating ribs again, which I haven’t done in > 1 year.) However, the chiro I saw there thinks my issues actually originate in my brainstem and cerebellum…
…which is interesting as these were likely the two brain structures most affected by my CCI/AAI and tethered cord.
He did one of the most thorough neuro exams I’ve ever had and found a bunch of movements (ones you would not do in day-to-day life) that were simply too complex for my brain to coordinate.
@mattyglesias So, a few things. One “ensure that no one gets it” can’t be the bar. It should be transmission prevention and risk mitigation to the fullest extent possible. (By possible I also mean plausible, but people often hide behind “plausible” as a way to defend doing Jack shit.)
@mattyglesias There are many transmission reduction strategies that we could be employing but aren’t. (Read up and down the thread. These are the people who were full blast organizing a global masking campaign back when the CDC and most MDs thought that was a silly idea.)
@mattyglesias In fact, we aren’t even talking about transmission reduction anymore! Most of the focus is severe disease prevention, because that is what vaccines do. The intervention has shaped the goal. If vaccines did something different, then that would be the goal.
This is important. I’ve had disabled people with fairly “mild” medical conditions (in terms of daily physical anguish) push back when I have tried to talk about disease severity with the critique that I was engaging in some kind of oppression Olympics. Or hierarchy of disability.
Not all disabled people have medical conditions but many of us do, and for some communities, that IS the lion’s share of the fight. When you’re not getting your basic medical needs met, and are being actively harmed, you have to share the facts that mitigate that harm.
Granted, baby disableds can sometimes do this in a way that uses ableist tropes, etc., but we need both a “hall pass” as well as ways to gradually learn. In the gaps, I think there are bridging concepts and language we are missing.