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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@aae

I had an internal vibration right under my sternum last night cooking dinner! I definitely pushed my limits yesterday doing too much. I immediately sat on the kitchen floor once I felt this strange feeling, but knew I would be fine since I have already had every cardiology and neurology test under the sun. Thank you for putting a name to it. I also experience severe sensory overload, sometimes I am unable to take a shower because my nervous system is overloaded from feeling the water on my skin.

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You just identified what I am going through. I didn’t know how to describe it. Thanks!

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@vonpinnon

One night while very sick with COVID Pnuemonia her whole badly starting having nerve pain and her hands went numb. She was sick for several weeks. Then she had mild nerve issues for about 3 months mainly in her hands and feet. Now the zingers have increased and added the internal vibrations. She’s 5 months out from having COVID. We are seeing a pediatric neurologist. However he hasn’t done any official testing like an MRI or such.

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hanks for your response. I wonder if the goal will be to protect how our immune system reacts to covid? Maybe it's wrong but i's like it went from covid pneumonia to issues with the nerves. And then possibly one thing reacting to another...I think the fact that someone else is identifying with your child's symptoms also is part of the goal here. Will similar symptoms have call for similar treatment? Here's to getting your daughter trending in the right direction...!

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The only explanation that makes sense to me is that we have nerve damage. When I had Covid, I had fever and extreme nerve pain. It makes sense our nervous system was injured and needs to repair itself from the viral damage.

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@rwinney

@weeds You're welcome! What did you like most about
the video?

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Finally there are professionals thinking outside the box! (I’m assuming CSS is a fairly recent theory?). I’m not sure I understand if there are solid answers, but good to have a name and an explanation, of which Dr. Sletten did an excellent job.
Thank-you for the link.

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@rwinney Thank you got the very informative and interesting video. CSS is something to consider in discussion with the tr of doctors moving forward.
One other area of research that seems to be relevant to symptoms is micro clotting and how that issues is effecting function.
Does anyone know if testing for micro clotting is happening and treatments for that are being used yet?

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@weeds

Finally there are professionals thinking outside the box! (I’m assuming CSS is a fairly recent theory?). I’m not sure I understand if there are solid answers, but good to have a name and an explanation, of which Dr. Sletten did an excellent job.
Thank-you for the link.

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You're welcome @weeds. I agree with you about the video. Dr. Sletten has created and promoted awareness of CSS, and has changed many peoples lives. The goal remains to continue educating patients so they can fully understand the scientific process behind their chronic symptoms.

The Mayo Clinic has offered pain rehabilitation services since 1974. Dr, Sletten began his Post-doctoral Fellowship in Medical Psychology at Mayo - Rochester in 1996. His scientific research has been amazing in dissecting the connection of chronic pain and psychology, and how a comprehensive pain rehabilitation program allows patients to shift focus and control from doctors to themselves through awareness and application. Good stuff!

Weeds, how are you doing? Are you able to apply any of the videos principles to your situation?

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@robinholly

@rwinney Thank you got the very informative and interesting video. CSS is something to consider in discussion with the tr of doctors moving forward.
One other area of research that seems to be relevant to symptoms is micro clotting and how that issues is effecting function.
Does anyone know if testing for micro clotting is happening and treatments for that are being used yet?

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@robinholly You're welcome. I'm happy you found the CSS video informative and interesting. It never hurts to have knowledge.

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@bunzman

hanks for your response. I wonder if the goal will be to protect how our immune system reacts to covid? Maybe it's wrong but i's like it went from covid pneumonia to issues with the nerves. And then possibly one thing reacting to another...I think the fact that someone else is identifying with your child's symptoms also is part of the goal here. Will similar symptoms have call for similar treatment? Here's to getting your daughter trending in the right direction...!

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So most likely there is a correlation between having been previously exposed to viral infections like chicken pock, herpes, HPV, EBV CMV…. All neuro toxic viruses. There are many more type of viral infections that occurred before contracting CoVID. During the COVID infection many of these dormant viruses were reactivated and collectively cause damage what I call an inflammatory spectrum disorder. Meaning the inflammation is concentrated in different areas of the body for different people. Me personally I consider what happened to me to be a neurotoxic inflammatory spectrum disorder. My symptoms are concentrated in my neurological system. Brain central and peripheral nervous system. I call painfull episode or episodes of confusion and lack of vision a flare. A Flare of my COVID Like symptoms. The triggered are good and bad stress. I experience symptoms after too much exposure to light sound screen time etc…. Lack of sleep and Food can also trigger a flare/episode. General practitioners do not have the data or the time to catch up or stay up to date.

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Yes, but is not the neuro inflammation a disfunction of an immune system as opposed to a dormant virus? On one hand we want a strong immune system to fight the virus, but is the culprit with some post-viral infections and why it is a matter of learning how to cope best with the symptoms?

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Did you know that long Covid is similar or may trigger to ME/CFS? There is a lot of research going on in that area....

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