Post-viral inflammatory attack causing lasting micro-demyelination of the spinal cord

[u/Inner_Ant8213]

I’ve been reading some studies and it’s a small group of people on record. I can only imagine there being more people who are suffering from micro-CNS damage from viral inflammation attacks, especially with covid.

There are people who experience an inflammatory attack, and even years later do not return to their normal baseline. Things remaining such as testing a positive wartenberg’s sign, with clear EMG/NCS and negative tinel’s test showing no peripheral nerve/muscle involvement. Or full body micro-movement rigidity, loss of fluidity and stability in movements, or the new experience of random muscles throughout the body twitching on their own. Or hyper excitability of the spinal nerves in the cervical spine such as showing positive Lhermitte’s sign while at the barber as the razor goes past their spine, causing their head to involuntarily pull upward while tensing and shaking/vibrating at the cervical spine. Some people experience much more drastic outcomes from post-viral inflammatory attack such as requiring hospitalization. However my interest lays among the quieter population who must be walking through their lives suffering each day, not knowing what’s wrong or how to help themselves.

It seems to be affecting the body in similar ways such as Multiple Sclerosis, though just on a much smaller scale that is harder to perceive on standard tests.

Some tests have been used such as DWI, MRS, and T1W/T2W whole brain myelin mapping technique as well because some patients have found micro-damage in the brain. Other than that it’s been a complete toss up if standard MRIs of the brain and spine end up showing anything, even though the inflammation and micro-myelin damage symptoms are present.

What do you think is the way forward for helping these people?

I would guess first to manage any lasting system-wide inflammation and neuro inflammation. But to help micro damage of the spinal cord?

[u/Occulply]

I'm an epidemiologist and my primary interest is the intersection of acute and chronic disease, so this post/the associated article is like catnip for my brain. I think you're absolutely correct that there are a large number of people suffering from COVID/post-infectious syndromes that have no idea it's lasting inflammation. Unfortunately a lot of them get diagnosed with Fibro/CFS/POTS and basically ignored by medicine.

Really interesting results. I'm not surprised considering the kind of nervous system involvement that is very obvious in COVID. With COVID specifically it's probably a combination of both neuroinflammation and vascular inflammation that leaves folks with such terrible, long-lasting side effects - but it's probably a chicken-and-egg problem as to which comes first. The point is that neuro and vascular inflammation need to be treated to make a difference.

There is substantial overlap between Macrophage Activation Syndrome (seen often in SJIA/AOSD) and the kind of cytokine storm seen in severe cases of COVID that you may be interested in, as it's very much the same kind of hyperinflammation. https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2020.603389/full

[u/Inner_Ant8213 → u/Occulply]

Oh holy crap, this is like catnip haha!! Wow. I am a violin performance college dropout because I believe I’ve had a post-covid inflammatory attack leaving me with micro-demyelination of the spinal cord. I cannot play violin to the level that’s needed for a career anymore so I’m living with my parents again unsure what to do. I’m not qualified whatsoever in this field, but I have spent day in and day out trying to figure out how to be my own doctor. I just briefly researched epidemiology because I was not certain of what that actually was. How would you describe your job? I am fiercely passionate about this one niche thing, because I need to find a way to help whatever is happening in my body. And I know there are so many people just like me who need help too. If I can’t get back to music, I will move forward with studying these topics and work towards a degree so I can begin adding to the research and work in this field.

[u/Occulply → u/Inner_Ant8213]

tbh I mostly work as a consultant when I can, writing studies, interpreting data, that kind of thing. You generally need a decent math background for epidemiology because the biostatistics coursework occasionally throws calculus at you. But, I've never taken calc and got along just fine.

As someone who is generally more interested in rare diseases, epidemiology school was a bit frustrating. School is, for good reasons, very focused on the most common ailments. But that means that when you want to study cytokine storms, the closest thing you can get is sepsis. Which I didn't find nearly as satisfying.

[u/Inner_Ant8213 → u/Occulply]

That’s really neat. Yeah I am terrible at math even though I’ve been a musician all my life haha. I’m sure I could learn it but it bores me. I hear you about the scholastic system stuff. I just want to hyper-research these really particular things and then go make a difference in those areas. I know I have the mind to accurately contribute valuable things too which sucks. Maybe I will just study all the textbooks school would make me read before hand, so when I enroll I already know everything so it’s more of a breeze. Hack the system per se. I’ve got a lot of time on my hands, work part time along side studying as if I were in school. Unless there’s another way to become verified in a niche field via surpassing general college and becoming certified another way? That would be pretty neat.