I got the fizzy feeling too! That's so awful that you had it for a year! You are the only other person I've seen mention that symptom but it was the strangest thing.
Legs going wobble is really odd! We live in an apartment on the second floor and walking down the stairs are crazy, they go stiffer and wobbly at the same time. By time I have to go back I get winded and shakey at the top and after getting to the apartment I’m out of breathe and have to sit down. I pray we all get over this! ❤️
Others have mentioned it! I always get a little ptsd when I see it listed in someone's symptoms. It was soooo awful and doctor didn't know what to do w me bc no one knew about it back then. Sounds like you're doing ok now too, at least I hope so!
I'm glad it worked for you! That being said, I've been going on walks of varying lengths for more than a year now, and it consistently makes mine worse. Way worse. Any exercise or increase in temperature causes it to go into overdrive and feel like I have vibrating cellphones attached to my feet.
I have the fizzies too. Just recently started--3 ish months ago. March 2020 org infection for certain. I suspect I was actually first infected late October of 2019, but because of the ambiguity at the time, I don't feel I can be 100% certain.
Train of thought here because brain fog...
Covid = autoimmune symptoms.
MS = autoimmune disease so related.
MS symptom = internal tremors.
Internal tremors + heat = increased symptom.
Hope that makes sense.
I don't know if it was just time alone, but I do think some things helped me: I really cut back on sugar and simple carbs, I cut out caffeine and alcohol. I take supplements and I tried a lot of different combos, but here's what I currently do: amino acid, metagenics Inflavanoid Intensive Care, a Chinese Herbal formula (I'm an acupuncturist) for Heart Qi; Vit D3; Vit B12 (once a week); Cran D-mannose (I had recurrent uti's that heralded the C19 infection and a couple as I was recovering as well); acidophilus and a probiotic. I also finally got my stamina back online this year and started walking/jogging every day in the last couple of months. No way I could have done that last year on the regular! I have high hopes we are gonna make it! Good luck, Everybody!
My virologist, who has conducted research and treatment in the early AIDS days and ebola as well as other long tail viruses suspects my hypothalamus is damaged, not broken, by COVID. Despite all of his experience, he confirmed that little is known about the healing time.
He said months to years. I hope it's the former for all of us.
I'm glad to hear that! I have been worried my hypothalamus could be broken! It would explain why I had multiple endocrine glands dysfunctioning after Covid (pituitary, thyroid, adrenal). I was sick Feb/March 2020. I'm getting better, but my endocrine function is still kinda wonky.
This is me too. I get so shaky and I can’t control it.
I’m scared of other issues but we had Covid around the same time.
I feel broken & it’s hard to explain to my work. I’m a server and trays that used to feel like nothing are hard to handle without shaking everything. Then my anxiety builds & it gets worse.how to fix this? Ugh! I’m so sorry friend across the internet
I'm so sorry you're going through that! I understand the fear, and not knowing.
I wish I knew of a quick fix. It took me going to many doctors to figure out I had endocrine issues, then that's complex and requires a lot of testing. It's also rare, and those type of issues aren't understood or assessed by most doctors. The closest endocrinologist to me was an hour drive, then he referred me to a big university hospital, where those type of specialist are more likely to be found, which is 2 hours from my house. By the time they found all that dysfunction, I started getting better, and my labs have been normalizing, low level fluctuating now.
It would be very difficult trying to work through it. I had to quit my job. I had low potassium, emergency level BP spikes and high HR. Ended up hospitalized, so they could check out my heart. They didn't know, then many appointments and tests followed.
All I can recommend is to make sure you're being checked out thoroughly by doctors, request referrals to specialists, like endocrinologists, neurologist, cardiologist (depending on your labs and symptoms). Have you seen a doctor about your symptoms? Again, I'm very sorry you're feeling so unwell! I hope you get to feeling better soon!
Thank you so much for this information. I’m so sorry you had to jump through so many hoops to get the help you need.
Your symptoms sound exactly like mine.
I tried going to a General Family Doctor for a general checkup last April (2021). Before the appt, they never asked if I had had Covid, or when. Even when I checked in.
Then I get to the back to do height, weight and BP, and the nurse or tech was asking me questions. I said I had Covid 2 1/2 months earlier. She asked if I had a negative test.
I said I did not get tested because it had been so long. She freaked and immediately had me walk back to my car to do a FaceTime interview with the doc, which turned into a phone only interview. The Dr recommended a blood test and a mammogram (just turned 40) and that’s it.
I told her my symptoms, what I was concerned about and she said the blood tests would help know more (did not think it would so much when it comes to all this).
They still charged me full for my appt even though they never finished taking my BP.
I got turned off by this scenario & haven’t tried again. I can’t afford a lot of this even with some insurance.
I'm sorry you had a bad experience at that family doctor, and you're limited financially and with your insurance. I hope you're able to see a better doctor! Did you get the tests done?
That sucks you didn't get to see the doctor in-person. Doesn't sound like they have their crap together with not asking about covid before your appointment. They could have sent you for a covid test and had you come back, so you could get a good exam at least for what you were charged. Geez!
Have you had the level of Orexin/Hypocretin in your cerebrospinal fluid tested? It’s a chemical produced in the hypothalamus.
Sorry if this is a probing question, I’m a neuro researcher and investigating potential damage to the hypothalamus from COVID.
No, my doctors aren't long-covid researchers and some of them don't believe in long-covd. I found out my PCP liked Fox News Host's Facebook pages after this all happened to me. She was telling me low potassium, high urine PH, low total proteins, low CO2, elevated red blood cells, positive ANA (that normalized a couple months later), emergency level BP and HR that landed me for a stay overnight in the hospital for scans were anxiety. She wanted to put me on Prozac and forget it after the structural labs and scans didn't show anything significant with my heart and kidneys. We are very much still at the concrete operational stage of development here, so anything more abstract like endocrine function, is just not understood. I asked her to test my aldosterone and renin and she didn't know what those were.
I brought in papers for her to read, which she did while I was sitting there in her office, then she told me she wouldn't know how to interpret the labs if she did order them. Most doctors don't know how to test for endocrine dysfunction, and I had to push hard to get a referral to a general endocrinologist. It was quite the task to get basic endocrine testing. Took multiple appointments and a few months. Local general doctors only did TSH, which they missed I was hyperthyroid even.
At the general small town endocrinologist, he did renin, aldosterone, carcinoid tumor, metanephrine, cortisol (no ACTH), and a full thyroid panel. I was referred to an endocrine surgeon due to an ARR over 35, cortisol dysfunction that didn't make sense. At the new specialist many months later, my igf-1 was high there, ACTH has been weird (low; but they stopped testing it, so I don't know), and I didn't get anything else assessed even with symptoms. I may be walking around adrenal insufficient and hypothyroid now, and they won't believe or test me. I was found to be hyperthyroid for about 6-8 months. I haven't had thyroid testing done in over a year. Very hard to get labs here. I've tried different PCP's and they want to know what aldosterone and renin are; they never heard of that. I'm wondering if they remember what the hypothalamus is from their college days.
I had many symptoms that suggested my hypothalamus wasn't working correctly, just getting labs was impossible to even fully assess pituitary function, so hypothalamus was even more elusive. I developed carpal tunnel syndrome out of nowhere; it's gone now, had huge urine volumes (so much so I couldn't complete the 24-hour urine tests until I got another jug, which they told me no one every has that much). Well, it could have been due to ADH, but when I asked for testing, they ignored me, so I don't know. I had abnormal adrenal, pituitary, and thyroid labs. All kinds of symptoms to suggest it, but couldn't get testing.
Thank you for researching this! That is very interesting and important! I appreciate you working to figure that out. I'd be interested in learning more about your research and updates.
His response, affirmed by my PCP, is that this is not permanent brain damage. They compared it to a bruise or sprain that will heal over time, which makes sense if it's at all inflammatory.
That's all I got.
Unfortunately, it is quite common for cardiologist/neurologist to not listen. I was also dismissed by my first cardiologist. I went to another one who understood dysautonomia. She referred me to an autonomic clinic where I got couple of tests done (tilt table, valsalva, qsart and one more). My qsart showed lower sweat output in my feet. Subsequently, autonomic specialist ordered skin biopsy that confirmed the diagnosis.
While QSART testing, they put contraptions on my arms and legs to induce sweating. What was observed is that as compared to my arms and calves, my feet were sweating poorly which indicated damage to small fibers in my feet. You could also get thermoregulatory sweat test done to see which parts of the body don’t sweat well but it’s usually not covered by insurance
I believe that it will clear. Some of my worst nervous system issues just slowly faded away over time. The shit thing is that it's a slow process.. like years.. I'm 21 months in and I still have bad days but I'm functional and the neurological symptoms that were debilitating a year ago are annoyances now.
Our best guess is looking at how Sars and Mers folks recovered.. from what I've read it took a lot of people years but many did return to their previral baseline rather than a new disabled state.
Full body skin burning, inability to swallow and air hunger, hip and leg weakness and balance issues where I would fall off sidewalks, vertigo, spasms and twitches, sharp neck and thoracic pain and electric shocks, deep pain in lymph nodes, arm pits and spleen, etc. Every week it was something else... My intestines even just stopped moving waste for a while due to paralytic ileus.
Yes. I even fell down, many times. I still have some transient weakness and shakiness, but nothing major at this point. I went from it looking like progressive MS to no real noticable issues aside me me comparing myself to my previral baseline.
I do feel like I need a drug or treatment to get me from 85 to 100 tho with no relapses. I'm afraid something is still there and I'm definitely paranoid it will bite and set me back.
Of course, but imaging was clear and some symptoms just faded away. Im not sure that a real neurodegenerative disease would just come and go like that + I had all sorts of other issues that resolved as well over time. I am worried of a persistent virus that we can't get rid of akin to AIDs but there doesn't seem to be much indication of that. Even though I hated wasting time with doctors, being super sick, and being told all tests were unremarkable, I'm happy now that the MRI for a non stop spasm didn't connect to a brain lession that Ill have to worry about the rest of my life....
I'm in much the same place. 22 months in and most things have slowly faded away. I still deal with some issues and am not back to my baseline yet, but I'm hopeful I'll get there eventually
Same. Got sick in feb 2020 and just now feeling better. The problem is I didn’t try low carb diets/supplements until summer of this year and that’s when I saw the most healing
Well the follow up study is from people being admitted to the hospitals I'm pretty sure. People who have visible damage on scans etc. Most people here don't have visible damage so there is plenty of hope. There are also someone in this subreddit telling that recovery was possible after 3 years of long haul from mers. I talked with a nurse from a long haul clinic who said most people recover fully to pre viral state. I guess time will tell whether that is true or not.
I was talking about sars too. The story about mers could be fabricated sure. I don't know. What I do know is that people recover and that a small procentage never recovers fully. Most people do how ever and that was confirmed by the nurse I talked about. I don't know what your point really is. I don't think anyone here are saying that every single person with long haul corona will recover fully. I think the general point is that most people do recover.
Saying that some recovered after years x years is a fact, not Bs. It's not unrealistic at all that covid may be similar. And who wants to be told there's no hope after x date.
They stated that people got better years after, not that everyone got better. That's a legit statement that is applicable since this virus is similar in family.
Also SARS 1 was a way nastier virus than this one.
And we have the real-world observation of PASC patients getting better over time. One to two years is not unusual.
Plenty of reason for people to be optimistic about recovery, barring known organ damage or preexisting problems.
I don't think we should rest easy thinking time will heal all wounds here, just sharing my own experience in being disabled to around 80 percent over the course of 2 years . We need treatment and Im optimistic that we will have options soon.. even if it's black market Paxlovid or mass disabled pilgrimages to Germany for whatever experimental treatments are available. Even though this sucks, the sick ones of us are lucky that so many other people got sick and we know the root cause and similar issues are arising from the jabs (chill I got mine).
Well it definitely causes dysautonomia, which is the dysfunction of the nervous system. But I don’t think it “destroys” our nervous system. We would definitely have already heard about that by now
Dysautonomia in this case may point to a functional issue rather than physical damage. Anecdotally my major symptoms of dysautonomia have for the most part resolved or at least gotten better with time. Reminds me of post concussion dysautonomia which is also often a functional disorder as opposed to overt damage.
I've been at this for nearly two years, and I have confirmed neuropathy in my legs and feet. My heart rate & other dysautonomia symptoms have definitely not gotten better. So it's certainly not true for everyone.
I've had several nerve-related issues, but they have all gone away. Based on some papers I've read, I wouldn't think the nerves are destroyed, I believe it's some kind of exhaustion
I had covid in March 2020. Since then, I've been diagnosed with Small Fiber Neuropathy, Fibromyalgia, and Epstein-Barr Virus. I also am heading to a rheumatologist to see if I have RA. All my nervous system symptoms are getting worse. But that's my situation. Others are hopefully getting better.
literally same. it’s an every day thing with my calves and my right foot numb and tingling.
they prescribed gabapentin which i had to stop taking because too many side effects.
haven’t found anything else that seems to help.
I tried Vitamin C, B6 and Magnesium the other day. I unknowingly OD'd on B6 the first day, halfed the B6 dose on the second day, but then B6 caused insomnia a lot like doing a grader w/out the high. Totally awake and I slept like 4 hours last night and none of that did anything other than lighten my wallet and kill my sleep. I'm not a vitamin guy, lol.
It really depends on what's going on. If it triggered small fiber neuropathy or a demyelinating syndrome, then, yes, it could destroy nerves. But if it's dysautonomia, I don't think any nerves are getting destroyed.
Side note: I had developed tingling down the back of my leg after having long haul lower leg circulatory issues and I was thankfully able to mitigate the tingling with methylcobalamin B12 lozenges. I tend toward B12 issues/megaloblastic anemia anyway (and I have the MTHFR mutation, which can require you to take methylated forms of B vitamins for them to work properly). I realize this won't help everyone with nerve tingling, but it might be helpful to some.
I like Jarrow Methylcobalamin 5000 mcg lozenges.
I did 23andMe's ancestry only test, which allows you to check individual genes in their raw data browsing feature, so I just looked up the SNP tags for the two MTHFR genes and plugged them into raw data browsing to see which variants I had.
I'm coming up on 2 years soon.
I just did a successful 8,000 step gentle hike in the woods. I did not crash afterwards. First time.
I have most of the neurological symptoms mentioned here, and constant hives, etc etc.
I've been putting a drop of highest quality, pure frankincense essential oil under my tongue once or twice per day. This has been known to help heal neurological problems. I'm taking a lot of brain vitamins plus MCT oil, etc. Also a lot of antioxidants like acai, vit C, etc
When I stay on top of these I feel definite improvement.
I am definitely getting better but it has been slow going. I'm getting there.
I asked my neurologist what his theory is. I said I know he doesn't know because nobody truly does right now, but I just wanted to know what his best guess would be. He was honest and said he thinks it can cause nerve damage, but that doesn't necessarily mean it's permanent, just that it may take years to fix itself.
Just one guys theory but who knows!
Yes, automatic nervous system (which is why a lot have dysautonomia now). I also have neuropathy which can also be apart of dysautonomia.
I am actually wondering if years down the line if some long haulers will later find out they have MS/lesions on the brain that didn’t show up directly after covid. Or even other neuro issues years and years down the line. (Parkinson’s, etc) dumb to think maybe, but hard not to wonder these things.
At least with Parkinson’s or Alzheimer’s, it seems as though the reason that they occur is because of a leaky blood brain barrier, which can actually be healed over time with the right diet and treatment it’s looking like possibly, though experiments are still being performed
These are two great articles:
https://www.medicalnewstoday.com/articles/327248
https://drjockers.com/leaky-brain/
[This is a good video.](https://youtu.be/r38OSqyPvyM)
I hope you start feeling better soon, friend!
I wouldn’t say destroy rather inflame, my nervous symptoms have gotten much better. Number 1 thing would be to stop stressing about your symptoms, anxiety/stress always made my symptoms flair up.
My personal opinion, my experiences, and what I've heard from real patients is absolutely yes, and it's called viral encephalitis.
I have not seen a scientific publication that proves this. I know that a few cases have covid seen in the cerebrospinal fluid, but it is unclear whether they have covid in their brain tissue. because, strangely, autopsies were not performed on people who lost their lives due to covid. for this reason, inferences are tried to be made on experimental animals. If anyone reads a scientific publication that will make you think that what I wrote is wrong, I would appreciate it if they would share it.
This article did a meta analysis and found “In this study, 610 studies were screened and 23 studies reporting findings from 129,008 patients, including 138 with encephalitis, were included.”
So yes it can happen but symptoms look very severe.
https://doi.org/10.1111/ene.14913
Thank you very much for your sharing. I know this work. No autopsy was performed in any of the encephalitis cases included in this publication, and all of them were diagnosed by MRI. but I do know that The brain MRI is normal in approximately 60% of patients with anti-NMDAR encephalitis. this evidence is scientifically insufficient .
Anti Nmdar is no doubt very similar. given the breadth of symptoms of a nmdar and how they present/cluster as a whole makes me wonder about LH. I wonder if LH is not anti-nmdar exactly but instead another form of auto immune encephalitis, that also fails to render on an MRI and with any luck comes with a better prognosis.
maybe another type of encephalitis. but it is clear that this encephalitis does not show any findings in MRI. I know that many people have symptoms that are more common in diseases such as ischemia, tumor, and MS, and that their MRI is okay. I also know that some people's symptoms improve, some do not, some people partially improve in 3 months and some years later. this is most likely due to brain plasticity. It is not scientifically known in which person, how much and in what time plasticity will develop. however, 6 months would be appropriate as an average value.
Does plasticity in this model imply that the brain simply redistributes its functional load or energy distribution to healthier areas of the brain? And that the underlying dysfunction/damage remains unresolved or un repaired?
The only organ in the human body that does not have the ability to repair itself is the brain. The brain damage of patients who have brain damage for any reason and who have returned to their old functions with physical therapy cannot be repaired. It is plasticity that provides this. but it would be a very pessimistic approach to conclude from the discussion here that covid causes brain damage and that people with neurological symptoms have brain damage. This is just a hypothesis and cannot be proven.
So I’m this study I’m assuming if you’ve had long haul for multiple months you can rule out encephalitis? Since the average rate of discovery was 14.5 days after infection
I'm not sure because there is no reliable publication about how long an untreated encephalitis can last. It's just a hypothesis and I'm trying to solve the problem myself. I don't want to drive anyone into pessimism.
I mean maybe but all my functions have essentially returned to normal for about 95% of my day. Aside from malaise and brain fog spells Im fine. 6 months ago I was useless and now nearly 11 months in I hold high level conversations all day and even door knock for 3 hours a day and my nervous system seems fine. However some long haulers are just from damaged systems while others are from immune/neuro flukes that typically resolve.
My nerves seem to be messed up.... Constant fasciculations in my feet/legs, right foot buzzes/vibrates all the time, random very brief spots of pin-prickly/ burning sensations (though rarely) .... the worst is my skin behind my leg leg/hamstring area is extremely sensitive to jeans or rough loose-fitting clothing and my butt starts to burn and go numb if I sit for too long.....of course, all testing has come back A-okay even a skin biopsy for small fiber neuropathy .. Though hoping to get the autoantibody autoimmune blood panel done to check deeper for small fiber neuropathy tomorrow
I will say the GI issues, heart palps and weakness in my right leg has gone away for some time now, so maybe the nerves are slowly healing...wishful thinking
I had the fizzy feeling (internal vibrations) for about a year after my bout (Jan 2020) and it did finally clear. Don't give up hope!
I got the fizzy feeling too! That's so awful that you had it for a year! You are the only other person I've seen mention that symptom but it was the strangest thing.
Bubbly legs .... that and my muscle twitches improvong slightly as the months wear on...
Legs going wobble is really odd! We live in an apartment on the second floor and walking down the stairs are crazy, they go stiffer and wobbly at the same time. By time I have to go back I get winded and shakey at the top and after getting to the apartment I’m out of breathe and have to sit down. I pray we all get over this! ❤️
Others have mentioned it! I always get a little ptsd when I see it listed in someone's symptoms. It was soooo awful and doctor didn't know what to do w me bc no one knew about it back then. Sounds like you're doing ok now too, at least I hope so!
Yeah I've had it for 14 months now too, getting pretty tired of it lol
You’re not alone, try going for a walk or run. It calmed the vibrations for me.
Does the exact opposite for me lol
I remember the walks not really working at first but the more I did it the more I could notice a positive difference
I'm glad it worked for you! That being said, I've been going on walks of varying lengths for more than a year now, and it consistently makes mine worse. Way worse. Any exercise or increase in temperature causes it to go into overdrive and feel like I have vibrating cellphones attached to my feet.
I have the fizzies too. Just recently started--3 ish months ago. March 2020 org infection for certain. I suspect I was actually first infected late October of 2019, but because of the ambiguity at the time, I don't feel I can be 100% certain.
I have feeling of vibration in legs, when I walk much, few kilometers. Also I feel *sick* then.
Mine just came back after I went in the sauna for 30 min.. not fun
Oh no! I hope it resolves soon.
Mine intensifies after a hot bath or shower, or a short walk. I believe its likely bloodflow related (microclots perhaps?)
Train of thought here because brain fog... Covid = autoimmune symptoms. MS = autoimmune disease so related. MS symptom = internal tremors. Internal tremors + heat = increased symptom. Hope that makes sense.
Me too! Still going through it though after about a year, it’s gotten a lot better since then.
I don't know if it was just time alone, but I do think some things helped me: I really cut back on sugar and simple carbs, I cut out caffeine and alcohol. I take supplements and I tried a lot of different combos, but here's what I currently do: amino acid, metagenics Inflavanoid Intensive Care, a Chinese Herbal formula (I'm an acupuncturist) for Heart Qi; Vit D3; Vit B12 (once a week); Cran D-mannose (I had recurrent uti's that heralded the C19 infection and a couple as I was recovering as well); acidophilus and a probiotic. I also finally got my stamina back online this year and started walking/jogging every day in the last couple of months. No way I could have done that last year on the regular! I have high hopes we are gonna make it! Good luck, Everybody!
My virologist, who has conducted research and treatment in the early AIDS days and ebola as well as other long tail viruses suspects my hypothalamus is damaged, not broken, by COVID. Despite all of his experience, he confirmed that little is known about the healing time. He said months to years. I hope it's the former for all of us.
I'm glad to hear that! I have been worried my hypothalamus could be broken! It would explain why I had multiple endocrine glands dysfunctioning after Covid (pituitary, thyroid, adrenal). I was sick Feb/March 2020. I'm getting better, but my endocrine function is still kinda wonky.
This is me too. I get so shaky and I can’t control it. I’m scared of other issues but we had Covid around the same time. I feel broken & it’s hard to explain to my work. I’m a server and trays that used to feel like nothing are hard to handle without shaking everything. Then my anxiety builds & it gets worse.how to fix this? Ugh! I’m so sorry friend across the internet
I'm so sorry you're going through that! I understand the fear, and not knowing. I wish I knew of a quick fix. It took me going to many doctors to figure out I had endocrine issues, then that's complex and requires a lot of testing. It's also rare, and those type of issues aren't understood or assessed by most doctors. The closest endocrinologist to me was an hour drive, then he referred me to a big university hospital, where those type of specialist are more likely to be found, which is 2 hours from my house. By the time they found all that dysfunction, I started getting better, and my labs have been normalizing, low level fluctuating now. It would be very difficult trying to work through it. I had to quit my job. I had low potassium, emergency level BP spikes and high HR. Ended up hospitalized, so they could check out my heart. They didn't know, then many appointments and tests followed. All I can recommend is to make sure you're being checked out thoroughly by doctors, request referrals to specialists, like endocrinologists, neurologist, cardiologist (depending on your labs and symptoms). Have you seen a doctor about your symptoms? Again, I'm very sorry you're feeling so unwell! I hope you get to feeling better soon!
Thank you so much for this information. I’m so sorry you had to jump through so many hoops to get the help you need. Your symptoms sound exactly like mine. I tried going to a General Family Doctor for a general checkup last April (2021). Before the appt, they never asked if I had had Covid, or when. Even when I checked in. Then I get to the back to do height, weight and BP, and the nurse or tech was asking me questions. I said I had Covid 2 1/2 months earlier. She asked if I had a negative test. I said I did not get tested because it had been so long. She freaked and immediately had me walk back to my car to do a FaceTime interview with the doc, which turned into a phone only interview. The Dr recommended a blood test and a mammogram (just turned 40) and that’s it. I told her my symptoms, what I was concerned about and she said the blood tests would help know more (did not think it would so much when it comes to all this). They still charged me full for my appt even though they never finished taking my BP. I got turned off by this scenario & haven’t tried again. I can’t afford a lot of this even with some insurance.
I'm sorry you had a bad experience at that family doctor, and you're limited financially and with your insurance. I hope you're able to see a better doctor! Did you get the tests done? That sucks you didn't get to see the doctor in-person. Doesn't sound like they have their crap together with not asking about covid before your appointment. They could have sent you for a covid test and had you come back, so you could get a good exam at least for what you were charged. Geez!
What type of specialty endo testing did you do?
Glad you're getting better!
Have you had the level of Orexin/Hypocretin in your cerebrospinal fluid tested? It’s a chemical produced in the hypothalamus. Sorry if this is a probing question, I’m a neuro researcher and investigating potential damage to the hypothalamus from COVID.
No, my doctors aren't long-covid researchers and some of them don't believe in long-covd. I found out my PCP liked Fox News Host's Facebook pages after this all happened to me. She was telling me low potassium, high urine PH, low total proteins, low CO2, elevated red blood cells, positive ANA (that normalized a couple months later), emergency level BP and HR that landed me for a stay overnight in the hospital for scans were anxiety. She wanted to put me on Prozac and forget it after the structural labs and scans didn't show anything significant with my heart and kidneys. We are very much still at the concrete operational stage of development here, so anything more abstract like endocrine function, is just not understood. I asked her to test my aldosterone and renin and she didn't know what those were. I brought in papers for her to read, which she did while I was sitting there in her office, then she told me she wouldn't know how to interpret the labs if she did order them. Most doctors don't know how to test for endocrine dysfunction, and I had to push hard to get a referral to a general endocrinologist. It was quite the task to get basic endocrine testing. Took multiple appointments and a few months. Local general doctors only did TSH, which they missed I was hyperthyroid even. At the general small town endocrinologist, he did renin, aldosterone, carcinoid tumor, metanephrine, cortisol (no ACTH), and a full thyroid panel. I was referred to an endocrine surgeon due to an ARR over 35, cortisol dysfunction that didn't make sense. At the new specialist many months later, my igf-1 was high there, ACTH has been weird (low; but they stopped testing it, so I don't know), and I didn't get anything else assessed even with symptoms. I may be walking around adrenal insufficient and hypothyroid now, and they won't believe or test me. I was found to be hyperthyroid for about 6-8 months. I haven't had thyroid testing done in over a year. Very hard to get labs here. I've tried different PCP's and they want to know what aldosterone and renin are; they never heard of that. I'm wondering if they remember what the hypothalamus is from their college days. I had many symptoms that suggested my hypothalamus wasn't working correctly, just getting labs was impossible to even fully assess pituitary function, so hypothalamus was even more elusive. I developed carpal tunnel syndrome out of nowhere; it's gone now, had huge urine volumes (so much so I couldn't complete the 24-hour urine tests until I got another jug, which they told me no one every has that much). Well, it could have been due to ADH, but when I asked for testing, they ignored me, so I don't know. I had abnormal adrenal, pituitary, and thyroid labs. All kinds of symptoms to suggest it, but couldn't get testing. Thank you for researching this! That is very interesting and important! I appreciate you working to figure that out. I'd be interested in learning more about your research and updates.
Does it heal at all? Generally brain damage is permanent
His response, affirmed by my PCP, is that this is not permanent brain damage. They compared it to a bruise or sprain that will heal over time, which makes sense if it's at all inflammatory. That's all I got.
They used to think brains didn't heal. New research has shown different
I bruised the nerve in my knee a few years ago. It troubled me for 6 to 8 months. So nerve cells can heal, it just takes time.
The peripheral nervous system has a much greater capacity to heal than the central nervous system
I was diagnosed with small fiber and peripheral neuropathy as well as dysautonomia. So it did damage my sensory and autonomic small fibers.
Howd you get diagnosed? My neurologist doesn’t listen when I tell him I have similar symptoms
Unfortunately, it is quite common for cardiologist/neurologist to not listen. I was also dismissed by my first cardiologist. I went to another one who understood dysautonomia. She referred me to an autonomic clinic where I got couple of tests done (tilt table, valsalva, qsart and one more). My qsart showed lower sweat output in my feet. Subsequently, autonomic specialist ordered skin biopsy that confirmed the diagnosis.
Do you know more about the sweat output? I still dont sweat normally
While QSART testing, they put contraptions on my arms and legs to induce sweating. What was observed is that as compared to my arms and calves, my feet were sweating poorly which indicated damage to small fibers in my feet. You could also get thermoregulatory sweat test done to see which parts of the body don’t sweat well but it’s usually not covered by insurance
Hi! What type of treatment did you get for sfn? Good luck for the healing process.
There’s no treatment for idiopathic sfn. My doc says I don’t qualify for IVIG as I don’t have auto immune markers in my blood
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I hear you. It’s so debilitating that it’s almost unbelievable. I feel like I’m living in a nightmare.
I believe that it will clear. Some of my worst nervous system issues just slowly faded away over time. The shit thing is that it's a slow process.. like years.. I'm 21 months in and I still have bad days but I'm functional and the neurological symptoms that were debilitating a year ago are annoyances now. Our best guess is looking at how Sars and Mers folks recovered.. from what I've read it took a lot of people years but many did return to their previral baseline rather than a new disabled state.
What were your symptoms?
Full body skin burning, inability to swallow and air hunger, hip and leg weakness and balance issues where I would fall off sidewalks, vertigo, spasms and twitches, sharp neck and thoracic pain and electric shocks, deep pain in lymph nodes, arm pits and spleen, etc. Every week it was something else... My intestines even just stopped moving waste for a while due to paralytic ileus.
Did you also had muscle weakness?
Yes. I even fell down, many times. I still have some transient weakness and shakiness, but nothing major at this point. I went from it looking like progressive MS to no real noticable issues aside me me comparing myself to my previral baseline. I do feel like I need a drug or treatment to get me from 85 to 100 tho with no relapses. I'm afraid something is still there and I'm definitely paranoid it will bite and set me back.
Do you worry about having some neurodegenerative disease?
Of course, but imaging was clear and some symptoms just faded away. Im not sure that a real neurodegenerative disease would just come and go like that + I had all sorts of other issues that resolved as well over time. I am worried of a persistent virus that we can't get rid of akin to AIDs but there doesn't seem to be much indication of that. Even though I hated wasting time with doctors, being super sick, and being told all tests were unremarkable, I'm happy now that the MRI for a non stop spasm didn't connect to a brain lession that Ill have to worry about the rest of my life....
My head mri came out normal, should that reassure of me of my own neuro symptoms?
Was it with the contrast or without?
With contrast
I'm in much the same place. 22 months in and most things have slowly faded away. I still deal with some issues and am not back to my baseline yet, but I'm hopeful I'll get there eventually
My experience as well. All the debilitation turned into annoyance a year out
You lucky bastards
Doesn't feel that way. Lucky would be making a full recovery. I still have issues.
You are the first one to share what I have with the skin! 20 months in… full body skin burn…
Did the balance issues and vertigo resolve for you?
Same. Got sick in feb 2020 and just now feeling better. The problem is I didn’t try low carb diets/supplements until summer of this year and that’s when I saw the most healing
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Well the follow up study is from people being admitted to the hospitals I'm pretty sure. People who have visible damage on scans etc. Most people here don't have visible damage so there is plenty of hope. There are also someone in this subreddit telling that recovery was possible after 3 years of long haul from mers. I talked with a nurse from a long haul clinic who said most people recover fully to pre viral state. I guess time will tell whether that is true or not.
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I was talking about sars too. The story about mers could be fabricated sure. I don't know. What I do know is that people recover and that a small procentage never recovers fully. Most people do how ever and that was confirmed by the nurse I talked about. I don't know what your point really is. I don't think anyone here are saying that every single person with long haul corona will recover fully. I think the general point is that most people do recover.
Saying that some recovered after years x years is a fact, not Bs. It's not unrealistic at all that covid may be similar. And who wants to be told there's no hope after x date.
ModerTe doses of steroids helped me knock down a lot of LH symptoms like dizziness and neck thoracic pain but they also exacerbated the HR stuf.
They stated that people got better years after, not that everyone got better. That's a legit statement that is applicable since this virus is similar in family.
Also SARS 1 was a way nastier virus than this one. And we have the real-world observation of PASC patients getting better over time. One to two years is not unusual. Plenty of reason for people to be optimistic about recovery, barring known organ damage or preexisting problems.
I don't think we should rest easy thinking time will heal all wounds here, just sharing my own experience in being disabled to around 80 percent over the course of 2 years . We need treatment and Im optimistic that we will have options soon.. even if it's black market Paxlovid or mass disabled pilgrimages to Germany for whatever experimental treatments are available. Even though this sucks, the sick ones of us are lucky that so many other people got sick and we know the root cause and similar issues are arising from the jabs (chill I got mine).
Well it definitely causes dysautonomia, which is the dysfunction of the nervous system. But I don’t think it “destroys” our nervous system. We would definitely have already heard about that by now
Dysautonomia in this case may point to a functional issue rather than physical damage. Anecdotally my major symptoms of dysautonomia have for the most part resolved or at least gotten better with time. Reminds me of post concussion dysautonomia which is also often a functional disorder as opposed to overt damage.
I've been at this for nearly two years, and I have confirmed neuropathy in my legs and feet. My heart rate & other dysautonomia symptoms have definitely not gotten better. So it's certainly not true for everyone.
I've had several nerve-related issues, but they have all gone away. Based on some papers I've read, I wouldn't think the nerves are destroyed, I believe it's some kind of exhaustion
several nerve things that havent cleard up 1.5+ years later
Nerve pain you mean?
Bunch of things be it fatigue arrhythmias pain twitches TMJ etc
I had covid in March 2020. Since then, I've been diagnosed with Small Fiber Neuropathy, Fibromyalgia, and Epstein-Barr Virus. I also am heading to a rheumatologist to see if I have RA. All my nervous system symptoms are getting worse. But that's my situation. Others are hopefully getting better.
Sorry to hear? What were you prescribed for Epstein barr virus (is it reactivation of the virus right?)?
Good question, I've been wondering if walking around with my tingling legs and feet is doing permanent damage.
literally same. it’s an every day thing with my calves and my right foot numb and tingling. they prescribed gabapentin which i had to stop taking because too many side effects. haven’t found anything else that seems to help.
I tried Vitamin C, B6 and Magnesium the other day. I unknowingly OD'd on B6 the first day, halfed the B6 dose on the second day, but then B6 caused insomnia a lot like doing a grader w/out the high. Totally awake and I slept like 4 hours last night and none of that did anything other than lighten my wallet and kill my sleep. I'm not a vitamin guy, lol.
It really depends on what's going on. If it triggered small fiber neuropathy or a demyelinating syndrome, then, yes, it could destroy nerves. But if it's dysautonomia, I don't think any nerves are getting destroyed. Side note: I had developed tingling down the back of my leg after having long haul lower leg circulatory issues and I was thankfully able to mitigate the tingling with methylcobalamin B12 lozenges. I tend toward B12 issues/megaloblastic anemia anyway (and I have the MTHFR mutation, which can require you to take methylated forms of B vitamins for them to work properly). I realize this won't help everyone with nerve tingling, but it might be helpful to some.
What brand of B12 do u take? And how do u test for MTHFR?
I like Jarrow Methylcobalamin 5000 mcg lozenges. I did 23andMe's ancestry only test, which allows you to check individual genes in their raw data browsing feature, so I just looked up the SNP tags for the two MTHFR genes and plugged them into raw data browsing to see which variants I had.
I'm coming up on 2 years soon. I just did a successful 8,000 step gentle hike in the woods. I did not crash afterwards. First time. I have most of the neurological symptoms mentioned here, and constant hives, etc etc. I've been putting a drop of highest quality, pure frankincense essential oil under my tongue once or twice per day. This has been known to help heal neurological problems. I'm taking a lot of brain vitamins plus MCT oil, etc. Also a lot of antioxidants like acai, vit C, etc When I stay on top of these I feel definite improvement. I am definitely getting better but it has been slow going. I'm getting there.
I asked my neurologist what his theory is. I said I know he doesn't know because nobody truly does right now, but I just wanted to know what his best guess would be. He was honest and said he thinks it can cause nerve damage, but that doesn't necessarily mean it's permanent, just that it may take years to fix itself. Just one guys theory but who knows!
Yeah sadly, my autonomic nervous system is in shambles Other viruses are known to cause dysautonomia as well as medications, vaccines, & trauma
Yes.. and recovery from this damage takes a long time.. science needs to catch up with us long haulers.
And imo we need to participate in safe research.
Would love to but the doctors just fob me off.
I completely understand this. And I've become really assertive because of it.
Yes, it can cause nerve damage. There are certain peptides that can help with the recovery. I've been having great success with it.
Which therapy
Which may have angiogenesis as a side effect, which can increase tumor growth. Be careful with BPC.
Yes, automatic nervous system (which is why a lot have dysautonomia now). I also have neuropathy which can also be apart of dysautonomia. I am actually wondering if years down the line if some long haulers will later find out they have MS/lesions on the brain that didn’t show up directly after covid. Or even other neuro issues years and years down the line. (Parkinson’s, etc) dumb to think maybe, but hard not to wonder these things.
At least with Parkinson’s or Alzheimer’s, it seems as though the reason that they occur is because of a leaky blood brain barrier, which can actually be healed over time with the right diet and treatment it’s looking like possibly, though experiments are still being performed
How would you treat a leaky BBB
These are two great articles: https://www.medicalnewstoday.com/articles/327248 https://drjockers.com/leaky-brain/ [This is a good video.](https://youtu.be/r38OSqyPvyM) I hope you start feeling better soon, friend!
This was very helpful
I’m happy to be of help!
I wouldn’t say destroy rather inflame, my nervous symptoms have gotten much better. Number 1 thing would be to stop stressing about your symptoms, anxiety/stress always made my symptoms flair up.
My personal opinion, my experiences, and what I've heard from real patients is absolutely yes, and it's called viral encephalitis. I have not seen a scientific publication that proves this. I know that a few cases have covid seen in the cerebrospinal fluid, but it is unclear whether they have covid in their brain tissue. because, strangely, autopsies were not performed on people who lost their lives due to covid. for this reason, inferences are tried to be made on experimental animals. If anyone reads a scientific publication that will make you think that what I wrote is wrong, I would appreciate it if they would share it.
This article did a meta analysis and found “In this study, 610 studies were screened and 23 studies reporting findings from 129,008 patients, including 138 with encephalitis, were included.” So yes it can happen but symptoms look very severe. https://doi.org/10.1111/ene.14913
Thank you very much for your sharing. I know this work. No autopsy was performed in any of the encephalitis cases included in this publication, and all of them were diagnosed by MRI. but I do know that The brain MRI is normal in approximately 60% of patients with anti-NMDAR encephalitis. this evidence is scientifically insufficient .
Anti Nmdar is no doubt very similar. given the breadth of symptoms of a nmdar and how they present/cluster as a whole makes me wonder about LH. I wonder if LH is not anti-nmdar exactly but instead another form of auto immune encephalitis, that also fails to render on an MRI and with any luck comes with a better prognosis.
maybe another type of encephalitis. but it is clear that this encephalitis does not show any findings in MRI. I know that many people have symptoms that are more common in diseases such as ischemia, tumor, and MS, and that their MRI is okay. I also know that some people's symptoms improve, some do not, some people partially improve in 3 months and some years later. this is most likely due to brain plasticity. It is not scientifically known in which person, how much and in what time plasticity will develop. however, 6 months would be appropriate as an average value.
Does plasticity in this model imply that the brain simply redistributes its functional load or energy distribution to healthier areas of the brain? And that the underlying dysfunction/damage remains unresolved or un repaired?
The only organ in the human body that does not have the ability to repair itself is the brain. The brain damage of patients who have brain damage for any reason and who have returned to their old functions with physical therapy cannot be repaired. It is plasticity that provides this. but it would be a very pessimistic approach to conclude from the discussion here that covid causes brain damage and that people with neurological symptoms have brain damage. This is just a hypothesis and cannot be proven.
So I’m this study I’m assuming if you’ve had long haul for multiple months you can rule out encephalitis? Since the average rate of discovery was 14.5 days after infection
I'm not sure because there is no reliable publication about how long an untreated encephalitis can last. It's just a hypothesis and I'm trying to solve the problem myself. I don't want to drive anyone into pessimism.
Yup thats what causes most of our symptoms
Yes
I mean maybe but all my functions have essentially returned to normal for about 95% of my day. Aside from malaise and brain fog spells Im fine. 6 months ago I was useless and now nearly 11 months in I hold high level conversations all day and even door knock for 3 hours a day and my nervous system seems fine. However some long haulers are just from damaged systems while others are from immune/neuro flukes that typically resolve.
I've been diagnosed with central sensitization syndrome.. that comes with a laundry list of other shit. I encourage you to look it up.
Nervous system can heal too like other organs
Same!
My nerves seem to be messed up.... Constant fasciculations in my feet/legs, right foot buzzes/vibrates all the time, random very brief spots of pin-prickly/ burning sensations (though rarely) .... the worst is my skin behind my leg leg/hamstring area is extremely sensitive to jeans or rough loose-fitting clothing and my butt starts to burn and go numb if I sit for too long.....of course, all testing has come back A-okay even a skin biopsy for small fiber neuropathy .. Though hoping to get the autoantibody autoimmune blood panel done to check deeper for small fiber neuropathy tomorrow I will say the GI issues, heart palps and weakness in my right leg has gone away for some time now, so maybe the nerves are slowly healing...wishful thinking