[DoreenMichele]

Excerpt:

A man, 29-year old, with a history of alcohol abuse suffered from hypoxic-ischemic brain injury after choking on a piece of meat. After an initial, though slow neurological recovery, spontaneous movement and speech disappeared. The patient developed such a severe impairment of arousal that he required intensive auditory and tactile stimulation to maintain a wakeful state. No structural lesions were found using a computerized tomography (CT) scan to explain this secondary deterioration, and conventional EEG-recordings showed no evidence of epilepsy. After a stay in the ICU and neurology department, the patient was transferred to a nursing home without a formal diagnosis explaining his hyporesponsive state. A structural MRI at follow-up showed signs of diffuse atrophy without hydrocephalus.

Eight years passed without any further improvement and neurological follow-up. Eventually, a new nursing home physician with experience in hyporesponsive disorders took over the patient's treatment and performed a new neurological examination to find directions to improve his care. Upon clinical assessment, the now 37-year old patient seemed awake, but showed a complete lack of voluntary movement (akinesia) and absence of speech (mutism). More specifically, the patient showed no affective reactions, initiation of eating or drinking, and remained incontinent. Although the patient showed no signs of spontaneous speech or vocalization on request, he was able to respond to questions or commands with movements with a significant delay (usually a couple of seconds) and with evident ataxia and muscle rigidity. Despite his intact awareness, the patient's initiative was so severely impaired that he remained wheelchair-bound and entirely dependent on nursing care for all daily activities, including the need for enteral tube feeding.

It's incredible how little we still know about some things. They couldn't pin down a cause and this is apparently a significant detail as to why this patient was basically warehoused in a nursing home with no real treatment for literally years until they tried this new thing, which had some short-lived effects.

[centimeter]

Several years ago I experienced a (thankfully temporary) severe reduction in brain function, for several weeks. I was shocked by the truly abysmal diagnostic capability of modern neuromedicine for anything less than large-scale physical trauma. In my case, they couldn't pin down a cause at all, except to say that the symptoms were consistent with a viral infection of the CNS. What virus? Who knows, we can only test for a handful of them.

[nucleardog]

We have the technology, it's just... not widely available yet.

There's a lab at UCSF[1] that actually specializes in doing genome sequencing of cerebrospinal fluid specifically for cases like this. They're talked about pretty extensively in Adam Savage's "Still Untitled" podcast[2] and all the crazy weird things they managed to diagnose this way.

We all have the impression that medicine is a solved problem, but we've still got a way to go. We're still making progress though.

[1] https://nextgendiagnostics.ucsf.edu/

[2] https://www.tested.com/podcasts/adam-savage-project/854328-s...

[mentos]

Thank you for that link to the Adam Savage podcast with Joe DeRisi. I watched the whole thing absolutely incredible research he is doing from a layman’s perspective it seems like a very bottom up approach that could take all of the guess work out of disease diagnosis.

[neuronic]

Despite the overly inflated ego of many neurosurgeons, neurologists and neuroscientists we have no conclusive picture about the brain as a working system.

We just have a few pieces of a puzzle and no idea what the overall image actually is. Neuroplasticity and adaptivity make this even harder because often you can't just take a part away like in a car and pinpoint issues due to the absence or disturbance of these parts.

If you knockout an area and a patient loses smell, will you say that you found the "center" of smell? We are still poking at the brain and figuring out its responses.

[raincom]

When neurologists just postulate virus to explain the problems like you had, they are just BSing. Oliver Sacks described many cases of neurosyphilis in his books. These doctors are just extrapolating based on that.

[centimeter]

Yeah, I got the sense that this was just the default box-filling diagnosis they defaulted to when they ran out of obvious stuff to check for (strokes, gross swelling, bacteria in CSF, etc.)

[jitendrac]

I had similar experience but it was for sudden-sensorineural hearing loss(high frequency) and tinnitus, I consulted a doctor with in 2 days of first signs and he was unable to point me to urgent treatments like steroid or hbot. in next week I consulted well known highly experienced(one 25+years other 30+years) doctors,none tried it. I found about possible options from another doctor after 6 months and it was too late.

[tomcam]

Man, I would like to hear any details on the situation at all that you are willing to provide. When it happened, what you felt like during the experience, what happened upon recovery… The whole thing.

[centimeter]

I think this was around July 2017. Most prominent symptoms were severe brain fog and lack of attention (to the point where I could not perform basic tasks like reading multiple sentences), problems with balance, and loss of appetite. Secondary problems included irregular heartbeat, wildly varying sensations of body temperature (without necessarily having a fever), sensitivity to light and sound, and several others. Onset was very fast (a couple days) and recovery was very slow (gradual improvement for 6+ weeks). I can’t say for certain if I ever bounced back 100% mentally, but I think I’m probably pretty close. It was definitely one of the worst things I’ve been through.

[therealx]

Sounds similar to when I had a concussion. It was such a minor hit, I didnt even realized I had something that could cause those kinds of side effects. I'm glad you feel better :)

[tomcam]

Well that's fricking terrifying. Thanks for the followup, and I wish you the best.

[kgc]

What were the symptoms?

[andrewem]

Thanks for that excerpt. The part I found most terrifying is that not only was the patient given no real treatment, but "Eight years passed without...neurological follow-up", meaning even an examination to see what his status was.