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Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Posted by robinholly @robinholly, Feb 13, 2022

Has anyone found some help and explanation for their neurological symptoms? Symptoms like tremors, dizziness, difficulty walking, tingling in legs and back, muscles twitches in legs, hand tremors, cognitive dysfunction, ringing in ears, pain and burning in toes and feet. I have these symptoms and more. I have been through MRI of brain and full spine, peripheral nerve testing, muscle function and short fiber nerve tests all in the normal range despite the symptoms. I have been on 900mg gabapentin daily with little improvement, then things got much worse after getting the booster last month. Would love to hear from some that have found help and explanation.

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felicia2 | @felicia2 | Nov 30, 2022
In reply to @lorilee13 "@robinholly My neurologist told me that I should not get the booster Ever! After two doses..." + (show)
@lorilee13

@robinholly

My neurologist told me that I should not get the booster Ever! After two doses of Phizer, I’ve been struggling with so many disabilities since my vaccination. I haven’t been able to work in over a year.

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Right! I have also avoided Covid booster! My impaired immune system from Arthritis seems to be responsible!
Should I check out Paxil? Primary doc wants me to return to Neurologist. But the trip to him seems like a painful wasted trip! 😭🙏

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3 replies
lorilee13 | @lorilee13 | Nov 30, 2022
In reply to @felicia2 "Right! I have also avoided Covid booster! My impaired immune system from Arthritis seems to be..." + (show)
@felicia2

Right! I have also avoided Covid booster! My impaired immune system from Arthritis seems to be responsible!
Should I check out Paxil? Primary doc wants me to return to Neurologist. But the trip to him seems like a painful wasted trip! 😭🙏

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@felicia2

I personally exhausted every specialist and test and was told “it’s a shit show” and they don’t know how to help me.

I personally have had terrible reaction to all the depression medication they prescribed me. Cymbalta seemed to help my pain but was terrible on my stomach.

I hope you and all of us get Recognition and True help soon!!

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biancasdream | @biancasdream | Dec 1, 2022

This is the second time that I know of contacting covid and going through the after-effects lastyear in 2021 was the most depressing year I have ever endured I had bad Gastric stomach problems that caused me to lose 40 pounds I was always average built so when I lose weight I fell underweight I also battled bad tremours and heart palpitations along with it for 8 months and after that, the Gastritis went away first then the tremours and heart palpitation left I had gained my weight back I was happy again it felt so good than 2 months ago I contacted Covid again now I have the vibrations and buzzing in my body as well as arthritis pain that comes and goes in different parts of my body the pain is really bad I rarely sleep I tried all kinds of pain killers but don't last anyway they want me to see a neurologist and pain specialist ....so just hoping my healing will come soon and also hoping everyone one here get well ...I'm so glad I found this site I don't feel alone anymore

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dennisjh | @dennisjh | Dec 1, 2022

I went to a neurologist last week he thinks that I might have damaged my spine when I fell over a year ago November 6th . He is sending me for another MRI for my head and spine but if there is damage he said they probably can’t do anything since the fall was so long ago. Stay positive and keep trying . Djh

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1 reply
lorilee13 | @lorilee13 | Dec 1, 2022
In reply to @dennisjh "I went to a neurologist last week he thinks that I might have damaged my spine..." + (show)
@dennisjh

I went to a neurologist last week he thinks that I might have damaged my spine when I fell over a year ago November 6th . He is sending me for another MRI for my head and spine but if there is damage he said they probably can’t do anything since the fall was so long ago. Stay positive and keep trying . Djh

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@dennisjh

My neurologist also thought I may be experiencing issues due to a prior neck surgery. I had been referred to a spine specialist had another MRI on my neck and the results were good.

Everyone seems to be going through the same process of elimination 😞 costly and emotionally exhausting. Then finally when there’s no test or explanation for our symptoms they realize it’s the vaccine 😞 (in my case anyway)

Wish you the best ❤️

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1 reply
dennisjh | @dennisjh | Dec 1, 2022
In reply to @lorilee13 "@dennisjh My neurologist also thought I may be experiencing issues due to a prior neck surgery...." + (show)
@lorilee13

@dennisjh

My neurologist also thought I may be experiencing issues due to a prior neck surgery. I had been referred to a spine specialist had another MRI on my neck and the results were good.

Everyone seems to be going through the same process of elimination 😞 costly and emotionally exhausting. Then finally when there’s no test or explanation for our symptoms they realize it’s the vaccine 😞 (in my case anyway)

Wish you the best ❤️

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Thanks in my case everyone keeps saying it can’t be from that get another jab. I would love to tell them where to stick that. Thanks stay strong. Keep fighting we can’t let this evil win. Djh

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ericy210 | @ericy210 | Dec 8, 2022

Yes- talk to your doctor about-

Brain fog latest research:

“Long COVID: how lost connections between nerve cells in the brain may explain cognitive symptoms” – Swedish study summary
https://theconversation.com/long-covid-how-lost-connections-between-nerve-cells-in-the-brain-may-explain-cognitive-symptoms-192702
“SARS-CoV-2 promotes microglial synapse elimination in human brain organoids”
https://www.nature.com/articles/s41380-022-01786-2.pdf

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felicia2 | @felicia2 | Dec 8, 2022

Hey! I have same symptoms- apparently neuropathy- but docs don’t recognize it. My Immune system has bee reacting painfully ever since my 2nd COVID vaccination!
What in Jeavens name is happening? Any insights?? RSVP Thanks 😊😇🙏

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lorilee13 | @lorilee13 | Dec 9, 2022

@felicia2

There’s a very helpful website I would suggest looking into. https://react19.org/

Many suffering from debilitating symptoms after vaccination. Myself included.

Hoping for the best!

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amandagoodhart | @amandagoodhart | Dec 13, 2022
In reply to @rwinney "Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I..." + (show)
@rwinney

Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I have no experience with COVID, but do have experience with the symptoms you've describe. All of my neurological tests were also negative and caused more confusion as to why I was experiencing this uncertainty in my body. Ultimately, I discovered that I have Central Sensitization Syndrome (CSS) and was treated at Mayo's Pain Rehabilitation Center (PRC) by Dr. Christopher Sletten.

CSS, as explained by Dr. Sletten in the following video, is an upregulation of the central nervous system which can affect a plethora of symptoms like nerve, muscle, joint and bone pain, sensory issues, tremors, vibrations, gut issues, etc... The body experiences hypersensitivity and goes into fight or flight mode. The upregulation takes place in the spinal cord and brain sending louder messages.

Find more info here:


Many specialists, like neurologists, do not know much about CSS or symptom management beyond medications such as nerve meds.

I wanted to bring Central Sensitization in to the conversation as you continue researching and connecting with others experiences in hope that it may make some sense of the unsettledness you feel.

Please free to ask any questions you may have. I am rooting for you! Do you mind getting back to me with your thoughts on what I have presented?

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This sounds like a POTS precursor?

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