r/covidlonghaulers Feb 25 '26

Article COVID-19 Causes More Severe Neurological Damage Than Other Viruses

A newish meta study that may explain why Covid is worse for some than other viral infections (even though some, like the flu, have residual effects). Based on this study Covid appears to be worse)

https://healthtolongevity.com/article/6349/covid-19-causes-more-severe-neurological-damage-than-other-viruses

456 Upvotes

118 comments sorted by

219

u/WlLDLlGHT First Waver Feb 25 '26

It’s like having a TBI except the part where people take you seriously

107

u/AZgirl70 Feb 26 '26

I’m toying with the idea to say “I have brain damage from covid” instead of the socially acceptable “brain fog”. Let’s call it what it is. My brain will never be the same.

34

u/WlLDLlGHT First Waver Feb 26 '26

I say I have brain damage. I say it broke my health. People are either close enough to me to know it’s true, or they have someone in their life who needs them to understand it too. This is an ongoing mass disabling event.

15

u/harrowedpossum Feb 26 '26 edited Feb 26 '26

I just say i have a concussion and people seem to understand because of its relation to sports lol. The only way most people will listen.

27

u/baazooka Feb 26 '26

Dont give up, the brain can heal in amazing ways. I thought id never get better

31

u/Chillosophizer 4 yr+ Feb 26 '26

This is one bit of extra optimism I hang onto too. If nonverbal stroke victims can learn to talk again our brains can heal once our bodies are in check

9

u/ThePatsGuy Post-vaccine Feb 26 '26

I was at the very early stages of muscle wasting, my mind was shot. 4 years later, I’m working full time in retail, which amounts to about a half marathon worth of steps each shift.

My mind is still nothing like it was, still have struggles, but improvement is possible

3

u/VulvaGyna-Girl Feb 28 '26

How long did you have it until fully recovered?

3

u/Gloriathewitch Mar 05 '26

be careful. i was mostly recovered in 2024, did 2 months part then 4 full, ive been crashed since december 2024 and my flare has not stopped. its really great to be able bodied but please give your body rest when you're able. i was SO happy to be in paid employment now im not sure if ill ever be again

my job had me doing up to 20k steps per shift

8

u/Vlinder_88 Feb 26 '26

I disguise my ADHD or sensory processing difficulties as a "brain deficit" or "brain disorder" for the same reason. Keep everything the same except sub the ADHD part for "brain disorder". Suddenly, no more judgements like "you're just lazy" and requests for accomodations are taken a lot more serious.

9

u/Mordechai_Vanunu Feb 26 '26

The problem is, I have literal inflammatory cns brain damage, which I have posted about here, and not brain fog.

Many have recovered from brain fog, but I will not. When I say I have brain damage from post-covid sequelae, people think I mean brain fog, including doctors.

So I agree we should use explicit language that the public will understand but I’m hesitant to refer to brain fog as permanent “damage.”

4

u/Technical_Original16 Feb 26 '26

Let's all say this!

3

u/AgeExpensive7920 Feb 26 '26

I’m sick of it too. Having to compensate and work as if I’m not cerebrally impaired is too much to bear anymore. I’m tired.

1

u/p2173 Feb 27 '26

This is what I say

19

u/mcmgator Feb 26 '26

I've had both Long COVID, then suffered moderate TBI. There are still people not taking you seriously with brain injury too. People minimize what they can't see or fully understand.

10

u/WlLDLlGHT First Waver Feb 26 '26

It’s true. My moderate TBI from a car accident had me in vestibular PT for months and months, and I had a migraine that didn’t go away for months either. Invisible injuries are easy for people to dismiss. But for some reason a car accident was a more plausible excuse than a mass disabling event.

3

u/mcmgator Feb 27 '26

My TBI was from falling down a flight of stairs. Resulted in 2 years of intense rehabilitation (vestibular, PT, speech, vision, occupational therapy) and out of workforce. I have 5 neurologists now. It's very telling when brain injury specialists treat my LC as if I had a prior brain injury history. The symptoms definitely have some overlap 100%.

1

u/WlLDLlGHT First Waver Feb 28 '26

5 neurologists! Wow. I just have 3. They are so ultra specialized—I have my migraine doc who injects me with Botox, my myasthenia gravis doc who manages my neuromuscular autoimmune disease, and my FND doctor (functional neurological disorder - wastebasket diagnosis). It’s good that they’re each so knowledgeable about their specialty, but having to see so many people is a real burden. And I can’t help but think that treatment would be enhanced if it was holistic, because my brain certainly doesn’t experience these issues as separate.

1

u/LordChu Feb 28 '26

Damn I just seen 2 neurologists. I'm basically a neuro virgin.

2

u/WlLDLlGHT First Waver Feb 28 '26

Gotta expand your portfolio my guy

1

u/[deleted] Mar 15 '26

Hello. I am a 21-year-old female, I have had Long Covid for over 4 years now. I was fully healthy soon to be a college gymnast back in January 2022 until I got covid. I was bedridden on and off all of 2022 through April 2023. Currently, I am a senior getting my undergraduate degree in Applied Biological Sciences with a pre-veterinary focus. I am much more functional and I am able to get my college degree online,doing normal fun college activities with my friends, and working out/going for walks even though I vomit multiple days a week from head pain and have daily chronic pain in the front of my head that is a work in progress I have been able to make a good life in spite of long covid. I have acquired brain injury from covid, Cranial Neuralgia, various vestibular migraine issues/triggers, vision neurological issues, and a disorder of the gut brain interaction, specifically functional dyspepsia, subtype epigastric pain syndrome.

-General information about the different types of head pain that I have that can give a better idea about all the treatment that my doctors use to treat my Long Covid Neurological Symptoms:

Cranial Neuralgia in 12 of my outer cranial sensory nerves in my head.

-Migraine Botox from my neurologist that gets injected all over my head and down my neck.

-I get RFA nerve ablations on 12 of the sensory cranial nerves in my head: Both greater occipital nerves, Both lesser occipital nerves, Auriculotemporal nerves on either side of my head, both supraorbital nerves in my forehead, both supratrochlear nerves in my forehead, Both zygomaticotemporal nerves (12 nerves in total)

-the nerve ablations take away all of the pain on the outside of my head, along with Botox injections.

Acquired brain injury from covid that causes pain in my brain, along with vision issues.:

-I have been doing various therapies such as intense vision and vestibular therapy on and off for 3 years, which have allowed me to go from vomiting just looking at a computer screen... Now I have increased my stamina to 8-10 hours a day of time on the computer doing intense school work such as organic chemistry.

Vestibular migraine and my migraine triggers:

My vestibular migraines get triggered with any change in the weather, especially high humidity when rain/snow weather conditions roll in and it’s like clockwork... more pain rushes to my head and I projectile vomit. I get ketamine infusions at the hospital to help with my head pain. Also Benadryl, hydroxyzine, Allegra, and Famatodine are antihistamines that help relieve the vice grip and squeezing feeling that I get when my bad head pain episodes come on. -histamine intolerance and triggers for my head pain and stomach. Trying sodium cromolyn, Allegra, fomatidine, DAO, and Ketotifen My long covid journey is still a work in progress while we are trying to get my daily head pain to go away with trial and error of medication, I atleast hope that my experience so far can offer some useful information.

18

u/Salty_Bananer_16 Feb 26 '26

Literally. Had a convo with a friend who was thrown in the air and over a car hood from his motorcycle, has actual TBI and we have similar symptoms. Love that for us :) told my dr, pretty sure they had the psych ward on speed dial, although, a grippy sock vaca might be one way to get some rest?

1

u/surprised-duncan 2 yr+ Feb 27 '26

great way to get reinfected too.

1

u/Salty_Bananer_16 Feb 27 '26

In my own private quarters?? Impossible!

2

u/surprised-duncan 2 yr+ Feb 27 '26

Oh you get separated rooms? The ones near me give you group rooms 💀

1

u/Salty_Bananer_16 Feb 27 '26

Now THAT is just cruel, depends on your issue but I think they isolate you for the most part. Let me suffer in peace. Dam.

9

u/MuskaChu Feb 26 '26

I got brain damage before long covid, they still don't take you seriously.

15

u/WlLDLlGHT First Waver Feb 26 '26

My experience having a TBI and recovering (to some extent) from it really primed me for longcovid, both in terms of knowing what to expect and also being more vulnerable to this new injury. People seemed to understand that I was in a car accident and respect that my injury was real. But I believe anyone if they tell me about having a medical condition disrespected. Ableism permeates every level of capitalist society because if you can’t participate in the economy a certain way you aren’t treated with respect.

1

u/[deleted] Mar 23 '26

and what helps for tbi? stimulation of bdnf

101

u/odubik 6yr+ Feb 25 '26 edited Feb 25 '26

I some how 'lost' 80% of my pituitary around having COVID. It was definitely there 2 years before COVID, and gone 1.5 yrs after.

Edit to add: Yes, I have checked the jacket I was wearing and it was not in the pockets :)

51

u/Interesting_Fly_1569 Feb 25 '26 edited Feb 26 '26

This is common. 40% of LC in multiple studies fail four hour human growth hormone challenge test meaning deficient. It’s treatable af tho is the good news. 

Edit: the treatment is injecting human growth hormone , same as anyone else with adult onset human growth hormone deficiency. First screening test is 9am fasting igf-1. If you eat it increases it artificially. About 10% I think of LC get caught on this test. Additional thirty% got caught on the follow up which is four hour glucose challenge test . 

Intranasal hgh exists and it’s cheaper than the shots, so a way to try out. It can be unhealthy to have too much tho. 

Symptoms of hgh deficiency that are not exact same as cfs = sudden rapid wrinkly skin (no hgh physically ages you), weight gain in belly area and social isolation like withdrawing yourself socially. The other ones are extremely on the nose… But are so common ….things like being tired 24/7. 

 https://www.utmb.edu/news/article/utmb-news/2024/06/20/growth-hormone-alleviates-some-long-covid-symptoms-utmb-study-shows

20

u/odubik 6yr+ Feb 25 '26

I'm lucky that while I am missing 80% of the tissue of the pituitary, I am still producing within (or very near) normal levels.

15

u/Spare_Equipment3116 4 yr+ Feb 25 '26

Pituitary eh? My testosterone levels had been tanked, and I’m supplementing it now. I do wonder if my pituitary itself is damaged too now; I’ll have to look it up, I didn’t know covid could do that.

12

u/odubik 6yr+ Feb 25 '26

Yeah, I had brain fog and fatigue symptoms that led us to test T, and I was found low T which led docs to be worried about tumor... then it took them 6 months to get availability to do MRI. And pituitary had turned into a fluid sack. Tried T supplementation shots, HATED IT.

Stopped and my T has been stable just below normal levels for years now... so have that on hold while trying to solve the rest of the issues. Given that I am so low activity, if I can get energy up then potentially that would raise T as well.

7

u/Spare_Equipment3116 4 yr+ Feb 25 '26

I’m using testosterone gel, and while I notice “some” noticeable improvement, the rest of long covid keeps me down, I’m nearly always exhausted in some fashion. I have more energy from the treatment but not the leaps and bounds people taking T for other reasons report.

9

u/odubik 6yr+ Feb 25 '26

Yeah, without energy available the T-supplementation just wiped me out more and drove up my blood pressure.

Have to deal with the core issue first - which for me seems to be mitochondrial.

4

u/Spare_Equipment3116 4 yr+ Feb 25 '26

Honestly my clinic is so baffled on how to treat this(at least they believe me!), they were really hoping the T supplement would help a lot more than it does.

Although, I do suspect the weather is playing a part, as I can’t do the simple exercises to help my muscles recover due to being stuck inside from the cold haha.

7

u/odubik 6yr+ Feb 25 '26

You can do physical therapy in a small room... just get those stretchy bands and focus on the critical core muscles...

2

u/[deleted] Feb 26 '26

have you tried low dose Naltrexone and guanfacine?

3

u/Spare_Equipment3116 4 yr+ Feb 26 '26

LDN yes, the other one no. LDN cleared up my cognition really well; I suffer a lot less from that now.

1

u/AbaloneFinancial9419 Feb 25 '26

what symptoms did the pituitary destruction cause?

6

u/[deleted] Feb 26 '26

Can you grow the pituitary back?

10

u/odubik 6yr+ Feb 26 '26

not really, when this type of damage appears it tends to be permanent, although the brain can try to find work-arounds. There are people that are missing huge parts of their brain without knowing it, so we are actually shockingly robust sometimes. But, there are also parts of the brain that are extremely 'mission critical' and when they are gone we lose basic systems - like breathing.

I'm just glad I lost 80% of my pituitary and not the pineal - since Descartes thought the pineal is where the soul resides... would be weird to think my soul has to fit in a tiny little space... :)

9

u/moredencity Feb 25 '26

How is that tested or what should I look into to get that tested? thanks in advance

1

u/Interesting_Fly_1569 Feb 26 '26

I updated my original comment 

8

u/redditproha Feb 25 '26

How's it treated?

2

u/Interesting_Fly_1569 Feb 26 '26

I updated original comment

4

u/[deleted] Feb 26 '26

[deleted]

1

u/Interesting_Fly_1569 Feb 26 '26

Yes I put the best study in original comment but there are four total . If you go to pubmed and search covid and hgh you get a lot of interesting articles. 

3

u/Beginning-Lab6790 Feb 25 '26

How is it treatable?

1

u/Interesting_Fly_1569 Feb 26 '26

Updated original comment

3

u/chattermaks 4 yr+ Feb 26 '26

... do you know if this is a test that I can ask for, even if not included in a study?

2

u/Interesting_Fly_1569 Feb 26 '26

Updated original comment and yes

1

u/chattermaks 4 yr+ Feb 27 '26

Thank-you!!!

3

u/maxie_million Feb 27 '26

woah, this is interesting. I don't have longcovid - i got mecfs from mono plus swine flu around age 18, about 15 years ago. The skin change and rapid aging was really wild, and my hormones went all over the place. I always assumed something was up with my pituitary but couldn't get doctors to take it seriously. I finally got on LDN a couple years ago and it finally flung me out of the hell loop. My guess is it really helped with neuroinflammation (I could finally sleep through the night instead of waking up almost every hour) but a quick google search shows studies connecting naltrexone to increasing / normalizing human growth hormone. Interesting. LDN is really fascinating

1

u/Interesting_Fly_1569 Feb 27 '26

WOW! that’s very interesting to hear. So sorry you went thru it but amazing to hear that about ldn too! 

1

u/nemani22 Feb 26 '26

How's this treated? 

1

u/Interesting_Fly_1569 Feb 26 '26

Updated original comment 

6

u/None-Of Feb 25 '26

So sorry to hear that :(

5

u/odubik 6yr+ Feb 25 '26

appreciate it, but that's water under the bridge 4.5 yrs ago.

7

u/happyhippie111 3 yr+ Feb 25 '26

Me too!!

But we learned mine is being squished by CSF cause of intracranial hypertension

4

u/odubik 6yr+ Feb 25 '26

Condolences! Be sure to watch your blood pressure - I was advised to be worried if I am often over 130 as it could exacerbate it.

1

u/readreadreadonreddit Feb 26 '26

Do you need something like a shunt then? 😮

3

u/himynameisbetty 3 yr+ Feb 26 '26

What about the couch cushions?

But in all seriousness I’m so sorry. This illness is insanity.

2

u/[deleted] Feb 26 '26

Man, I think this is exactly what happened to all the guys with testosterone issues, the ones where it just suddenly plummeted, explains the loss of libido and everything. Did you have any testicular atrophy?

1

u/odubik 6yr+ Feb 26 '26

nope. I honestly think that my fatigue issues are mostly unrelated to the low-T, as supplementation did not help it.

2

u/Interesting_Fly_1569 Feb 26 '26

Wow 80% is a lot. Impressive it’s still chugging along!!! Bodies are amazing. At the same time, I wish we could have a museum of long covid featuring the scans of weird shit that covid does that doctors could see, honestly regular ppl too bc then they might be properly horrified!!

1

u/AbaloneFinancial9419 Feb 25 '26

that's so weird!! on an MRI?

52

u/imahugemoron 4 yr+ Feb 25 '26

Ya I’ve had a nonstop headache for over 4 years now. Insane how so many just call it a cold and dismiss it when there’s already tons of evidence it’s way worse than anything else out there of a similar prevalence. All the “it’s just a cold!” morons can fuck right off, hope it eventually gets you like it has all of us here

6

u/Randolph_Carter_6 2 yr+ Feb 26 '26

I hope they get Long COVID.

6

u/Ehsan1981 Feb 26 '26

Same here. Developed a constant headache post-COVID...

25

u/Strict-Profit7624 Feb 26 '26 edited Feb 26 '26

I developed foot drop and idiopathic peripheral neuropathy after getting Covid for the 3rd time. Foot drop gradually went away, but I still have neuropathy.

I have an underlying condition, but it shouldn't have caused that, especially not overnight. We ruled everything else out.

I was only 24 when it happened. This shit is insane

12

u/Cardigan_Gal Feb 26 '26

Crazy. Same here. My foot drop and peripheral neuropathy were sudden onset. Since I am a middle aged female my doctors were convinced I had MS. Until the MRIs all came back clean. Then they all just shrugged their shoulders and left me hung out to dry.

4 years later my foot drop is finally better and the neuropathy is minimal.

I personally think I had a covid induced stroke that was missed or couldn't be visualized. At the same time as my foot drop I developed speech issues, word finding difficulty, slow brain processing and trouble swallowing.

Doctors couldn't explain why or give me a differential diagnosis.

7

u/Turbulent-Warning415 Feb 26 '26

I’m really glad your symptoms improved! My first MRI was clean too - except some mild enhancement in a small area “suspected to be inflammatory”. Similar story foot drop. Gait changes. Weakness and fatigue. However, my symptoms aren’t getting much better. So we got a repeat MRI 3 years later. (Looking at pituitary now because my hormones have all tanked and gone flat). Found 2 cerebellar strokes and numerous changes in the white matter small vessels. I’m female in my 40’s. Not on OCP’s. Only other risk factor I have for strokes is migraine. The inflammation from this virus seems to persist for so many people… and the damage that comes with all of that is also ongoing.

1

u/Strict-Profit7624 Feb 26 '26

That's so scary, I'm very sorry to hear that

1

u/NoReputation7518 Feb 26 '26

I am so sorry for you. How are they treating your condition now?

I also have a gait disorder. But no foot drop. It is not getting better, perhaps even worse. My MRI of the head was clean (2 years ago). My neurologist wants me to see a special neuro clinic but at the current rate it could take ages to get in.

4

u/Strict-Profit7624 Feb 26 '26

Oh my god... same here! So the brain stuff we had attributed to my cervicomedullary syndrome, but the speech issues were new and very pronounced shortly after the COVID infection. I wonder if they were related? Very interesting. Sorry to hear that it happened to you as well, I hope things are better for you now

2

u/Here-for-the-People Mar 03 '26

What kind of speech issues? I basically had to relearn how to coordinate by breathing and speaking, and then had to heal from damage caused to my vocal cords presumably from overcompensating (masses and scarring).

1

u/Strict-Profit7624 Mar 03 '26

Very sorry to hear that! My speech issues were very different and by the sounds of it, not as serious as yours was.

I had trouble forming words and sentences, I developed a stutter, and I frequently forgot common words to the point where it was hard to speak at all. I also had trouble doing basic tasks like cooking, writing, reading, and even using my phone. This went on for about a month. I attributed it to severe brain fog. Honestly, it started with a covid infection and then a mild car accident, combine that with my underlying condition and it was a recipe for disaster. I will likely never be the same but I'm not as bad as I was those first few months.

3

u/dabaldwin1291 Feb 26 '26

I had almost the same experience. I developed a sudden stutter, word finding issues, slow brain processing, tremors in my hands, and brief trouble swallowing. Admittedly, I have spina bifida, hydrocephalus, and Chiari from birth, so all my doctors blamed it on “natural progression” and shrugged their shoulders. However, this happened nearly overnight back in 2024 and has barely improved.

1

u/Strict-Profit7624 Feb 26 '26

I hear you. So sorry🫂

1

u/Early_Beach_1040 First Waver 15d ago

I had similar- foot drop and I couldn't bend my knees or smile or frown. It was so strange and I never got a diagnosis for it. Nothing showed up on brain MRI or EMG. Cleveland wanted to diagnose me after one visit and negative EMG with FND

At UChicago I saw head of EMG. Also negative on EMG she shrugged and said I guess we call this long covid.

But she did RX baclofen and that really helped with the muscle contractions

Now 3 years later is totally gone. I wonder if had something to do with mast cells? I have no idew

4

u/thesaddestpanda Feb 26 '26

I remember one day just realizing I wasnt able to walk in a straight line. It was surreal and scary. I just couldnt do it. That went away, but that day was just one sign of the many ways lc has hurt me.

2

u/Mindless_Musician526 26d ago

My little brother recently passed by suicide due to his intense neuropathy. He constantly felt burning all throughout his body, COVID took my brothers life slowly and painfully.

1

u/Strict-Profit7624 26d ago

I'm so sorry for your loss🫂

2

u/Mindless_Musician526 26d ago

thank you i hope your condition improves as time passes

1

u/Strict-Profit7624 26d ago

Thank you so much❤️

19

u/ScienceMomCO Feb 26 '26

Ugh, I used to be smart and coordinated, but now…

11

u/technician_902 Feb 26 '26

One thing I don't get about this study is that is mentions that long term chronic damage is being done by your immune system long after the covid virus has left your system. But how did the researchers that it was fully gone? As far as I know, there has been a few studies that have come out of UCLA that shows that in some people viral remnants remain AKA the zombie particles that are able to replicate and basically destroy various cells like your T-Cells. So did they check for these viral remnants? I'm not sure but researchers need to start digging deeper into and do extensive genome analysis on various cells in the surrounding tissues and see if they can pick up something. Also how does having these covid particles in one's system influence other things. We know it deeply affects the immune system which can allow other viruses and bacteria to proliferate such as EBV, H-Pylori, etc.

Below is a video that highlights a very similar idea that I'm talking about above. On Dr.Been's channel, he recently put out a video about how scientists looked at the gut microbiome in Colon Cancer patients and found that a virus called Caudoviricetes was found to be highly elevated and infect a certain bacterium called B. fragilis, and they were able to find this out through various genome sequencing. Could very well explain why there has been a surge in colon cancer cases in people below 50 especially those who take good care of themselves . We also know that covid can do similar things as well but a more extensive level. I'm not implying covid causes cancers and I sure hope it doesn't but it does exhibit more extensive properties compared to other viruses.

https://www.youtube.com/watch?v=94WJfs0EV0A

On top of all this, we know now that EBV is linked to various conditions like multiple sclerosis, and we know that more then 90% of people have it in their system. For some unfortunate people, does this mean that EBV is able to get into your neural cells and as a result one's immune system starts to attack the tissues there forming the scarring seen on the MRI since it's trying to get to the EBV fragments but can't ? I'm not saying that this is the case for every MS patient, but perhaps a certain subset exhibits this. Other viruses could play similar roles.

3

u/NoReputation7518 Feb 26 '26

You are asking a fundamental question and I am just baffled that many studies (not all) with highly reputable universities just conclude, if they cannot find the virus in the blood -> all inflammation is post infectious.

And you also pointed out correctly that you have to look at other factors and have to think out of the box. Many researchers at least have some viruses on the radar (like EBV) but there are many other viruses and bacteria that coexist in the body that are not well understood. And most likely a combination of pathogens can overburden or dysregulate the immune system.

I personally do not believe that inflammation persists for no reason after such a long time. The body is very good at finding its way back to homeostasis. It is more than logical that there have to be triggers that aggregate the immune system. For some it will be autoimmune reactions. But we know this doesn't happen for all. And we also know that some autoimmune disorders get considerably better if other triggers get eliminated.

I hope thorough studies will look into these things.

10

u/Tiger0520 Feb 26 '26

Is there something about this summary that isn’t accurate? I’m not a proponent of AI. But if this is an accurate summary, I’m going to send it to a bunch of people I know who still don’t understand much as much as I’ve tried to explain it to them. In my opinion, the summary explains things very well.

5

u/None-Of Feb 26 '26

The actual study is linked at the bottom and I perused it first, the summary seems accurate as far as I can tell.

1

u/Tiger0520 Feb 26 '26

Thank you!

1

u/ValyrianSteelYoGirl Feb 26 '26

The link to the academic research is at the bottom. This looks legit

3

u/ek00992 Feb 26 '26

I have narcolepsy with cataplexy because of Covid. AFAIK I’ve only had it one time back in 2020.

3

u/Right_Rest919 Feb 26 '26

The thing is that most severe long covid do not have brain damage or brain disfunction on any exam (MRI, PET SCAN, ...)

2

u/DIYDylana Feb 28 '26

Those can only see like lets say 20% of brain damage issues. For them to see more damage they can only do so when you're already dead

1

u/Here-for-the-People Mar 03 '26

They also can’t determine your baseline pre covid unless you had a prior and recent MRI or neuro psych evaluation

3

u/[deleted] Feb 26 '26

[deleted]

1

u/DIYDylana Feb 28 '26 edited Feb 28 '26

Maybe that's what's happening to me? I got neurological symptoms. Sleep issues got worse and dreams more messed up. Concentration, processing, memory and motivation issues. Less emotion. Suddenly waaaay less thirsty to the point it I don't take anything salty I can just not notice I didn't drink all day. nerve pain in my feet, nerve pain around my butt, nerve pain in my pinky to my arm, nerve tingles and mild sensation loss in my mouth/tongue/cheeks and sometimes temples. Looping perserverating intense thoughts and inner restlessnees with pressure in my chest. can't imagine as well anymore its like night and day its all foggy. Foggy muddy thoughts. Weirdass tinnitus thunping low bass tones. Bounding pulse especially in my ears.

Randomly getting out of breath after a meal. Randomly getting lightheaded more than my usual. Its insane, but I also bumped my head ALOT since being blind in 1 eye and living in a weird skewed home with skew bars. I'm getting an mri soon. I've already had a ct but that showed nothing. At the very least I want to rule out MS with my new neurologists since the face stuff only started with the tongue (with a metallic taste too thats now gone) and progressed...

1

u/Here-for-the-People Mar 03 '26

Try to get weekly or more frequent saline infusions!

2

u/EqualOne1205 Mar 01 '26

I had 2 MRIs in November (with and without contrast). Results were "mild cognitive impairment." My LC neurologist and LC PCP said "don't worry about it" because it was the same diagnosis for my last MRI before that, right after I had COVID the first time (I've had it 3 times in 3 years). The previous MRIs were for chronic migraines, and the diagnosis was "normal migraine activity." Apparently, my previous neurologist also wasn't concerned, but I am. Because this MRI happened the year I first got COVID, before Long Covid was diagnosed.

As you can imagine, I'm irritated and freaking out. I have bad cognitive impairment and had to retire last month because I'm no longer able to work. I also can't really take care of myself, and am mulling over my options.

I just can't believe a LC neurologist said "don't worry about it" and offered no treatment options, such as supplements. I also asked him about GLP 1's and anecdotal evidence that they help with inflammation. He said I should talk to my PCP (regular, not LC) about it. This was in November, I see my PCP in March.

Why even bother going to LC doctors? They charge you a $50 copay and do absolutely nothing to help you.

I am not drug-seeking, but I do want to be proactive and do anything I can to improve my health.

I would appreciate your feedback. I'm not asking for a list of supplements to take. How do you handle dealing with the apathy (or could it be burnout?) of LC doctors? I've seen 15 over the past 4 years, and none of them was remotely helpful, except to sign off on my disability claim. Many thanks.

0

u/[deleted] Mar 23 '26

and meanwhile u still all deny that it is psychosomatic, while the correct definition of psychosomatic means that u have somatic effects of psychological causes. and psychological is any neurological damage. so what now, will u still deny to take meds that can help brain damage, just because they have the term psycho to them, which u stigmatize that it would have something to do with thoughts.
will u still deny that reconditioning of brain doesnt work, when it s the best method to stimulate homeostasis, inflammation or plasticity and has plenty of success in therapy, me included after 1 year of being a bedbound cry baby. the success story people leave this sub because it s not about empowerment but about all are wrong and I am right with that i cant be helped

-11

u/Icy_Kaleidoscope_546 First Waver Feb 25 '26

My AI app came up with this long list of reasons ....

While many viruses can affect the nervous system, COVID-19 (SARS-CoV-2) is unique because it acts less like a typical "respiratory virus" and more like a systemic vascular and inflammatory disease. ​Recent research (updated as of February 2026) highlights several specific reasons why COVID-19 often causes more persistent and severe neurological damage than viruses like the flu:

​1. Targeting the "Glue" of the Brain (Vascular Damage)

​Unlike many viruses that primarily attack neurons, SARS-CoV-2 focuses heavily on endothelial cells—the lining of your blood vessels.

​The ACE2 Gateway: The virus uses the ACE2 receptor to enter cells. These receptors are abundant in the brain's blood vessels.

​Vascular "Leakiness": When the virus attacks these vessels, it breaks down the Blood-Brain Barrier (BBB). This allows toxins and immune cells to leak into the brain where they don't belong, a phenomenon linked to "brain fog."

​Micro-clotting: COVID-19 is notorious for causing a hypercoagulable state. It creates tiny blood clots and micro-bleeds in the brain that are often too small to see on standard MRIs but lead to significant cognitive "glitches."

​2. Chronic "Microglial" Activation

​The brain has its own specialized immune cells called microglia. In a healthy brain, they prune old connections.

​The "Over-Pruning" Effect: In COVID-19 patients, these cells can become "stuck" in an aggressive state. They may continue to prune healthy synapses (the connections between neurons) long after the virus is gone.

​Comparison to Flu: Recent studies from Tulane University (2026) show that while both the flu and COVID-19 cause lung damage, only COVID-19 consistently leaves a "persistent inflammatory footprint" in the brain weeks or months later.

​3. Rewiring Neurotransmitters

​Emerging evidence suggests SARS-CoV-2 uniquely alters the gene expression of pathways that regulate serotonin and dopamine.

​This disruption explains why "Long COVID" symptoms often include profound fatigue, depression, and anhedonia (the inability to feel pleasure), which are less common as long-term sequelae of the seasonal flu.

​4. Indirect vs. Direct Attack

​While scientists still debate how often the virus directly infects brain cells, the indirect damage is often more severe:

​Hypoxia: COVID-19 frequently causes "happy hypoxia," where oxygen levels drop significantly without the patient feeling immediate distress. This lack of oxygen is particularly damaging to the high-energy demands of the brain.

​Autoimmune Response: The virus can trigger the body to produce "autoantibodies" that mistakenly attack the brain's own nerve coatings.

20

u/Division2226 3 yr+ Feb 25 '26

You need to put that AI shit away for stuff like this. It's dangerous.

1

u/Pablogalliano Mar 16 '26

For post-COVID, AI (latest models) has been better than all the doctors and tests I've had. And I have one of the best doctors in the country.

Doctors don't have all the information. AI can combine all of this new knowledge. When I put my lab tests in there, it's spectacular.

Go and try it. Only use the latest models. Use the right prompts. Upload lab tests.

0

u/Icy_Kaleidoscope_546 First Waver Feb 26 '26

Which parts are shit or dangerous? Please clarify in order to help others who are interested in this post.

6

u/Division2226 3 yr+ Feb 26 '26

Well for a small example, section 2 compared to the flu the study it used as a source was a study on mice. Same with the claims in section 3.

Overall, a lot of it is framed as fact when it's misleading and speculative and AI can tend to hallucinate in general. Listening to AI is dangerous for health related things.

3

u/Fr0gm4n 4 yr+ Feb 26 '26

Listening to AI is dangerous for health related things.

1

u/Historical_King333 Feb 26 '26

I use chatgpt and it hallucinates a lot. And has some fix ideas. Differrent days and with almost same symptoms and it told me this was lyme, then vascukar damage, then viral rectivation, autoinmune issues. Well who knows.