1. < Post-COVID Recovery & COVID-19

Anyone else told their medical system has no neuro willing to treat?

Posted by inmetta @inmetta, Mar 31, 2023

After months of waiting for my neurology eval, referred by the post covid clinic, I was told the neurologist would not see anyone with a history of Long haul covid, nor would any neurologist within the large practice. I stated my issues were headaches, cognitive issues and visual disturbances and wanted to rule out any other possibilities. And I was told flatly, and rather unkindly, no. I'm totally at a loss. Hopefully the folks at Mayo will call back, so I can make an appointment there.

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cristen1 | @cristen1 | Apr 10, 2023
In reply to @ldmcfate "I have a number of long COVID issues. Most I haven’t found help for, but I..." + (show)
@ldmcfate

I have a number of long COVID issues. Most I haven’t found help for, but I was able to get rid of the brain fog with hyperbaric oxygen therapy. Not covered by insurance, of course. The hospital closest to me wanted $2,000 a treatment. But I found a small clinic about half an hour from my home that had just gotten 3 of the chambers that would pressurize high enough. After 5 “dives” at 2.0 atm for 1 hour each, my brain fog was gone. It cost $1,000 but was worth every penny. I just wish it would help my muscle problems.

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Find a FUNTIONAL Neurologist to heal your brain (NOT a regular one) and a Holistic Nutritionist to heal your gut health.

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cristen1 | @cristen1 | Apr 10, 2023

Forget Mayo….Find a FUNCTIONAL Nuerologist to help you and possibly a Holistic or Functional Nutritionist. I am using both and healing so much. It is ALL out of pocket expense but worth every penny. Look up Brain and Spine-Dr Harrison Salisbury in West Jordan, Utah. He is on Instagram and YouTube…you can contact his office for a free zoom call…and he can help you find someone in your area or fly to him! Go look at his work! You just need some brain help with lasers and gut help with the right diet and supplements.

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1 reply
law59 | @law59 | Apr 10, 2023
In reply to @lisadunlap "I have also developed these tingling graduating to internal tremors and actual shaking, starts in early..." + (show)
@lisadunlap

I have also developed these tingling graduating to internal tremors and actual shaking, starts in early hours, comes in waves, and wakes me and now accompanied by overall body weakness and like a neurological storm that affects body and brain. It’s causing debilitation and torment including emotional. NOTHING I’ve experienced in my life vaguely resembles.

Been to my Dr, the ER, clear CT scan, and one zoom visit to neurologist this week who has ordered MRI in 3 weeks and put me on a trial of anti seizure meds, momentarily it helped the physical but everything is back and escalating and I’m unable to cope.
This was a relatively sudden onset.

If I can’t find relief I simply can’t function in this body.
I am 68 and had a good and happy life before this. As of now my life as I knew it is gone.
Does anyone think that Mayo could help?

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Hi @lisadunlap. Please dont give up. As you are able to read more posts and glean helpful insight and resources, you will realize there are things improving. I am 60, little over year post covid, and gratefully not as bad as last year which you seem to be experiencing as so many of us. It seems “true” rest and care for our bodies needed whether few months or years depending on our individual bodies. Just as this year seemed impossible at the beginning, I am able to maneuver now and know I can make it thru the next year to reap the benefit of spending another 40 years with loved ones💖 Hope this helped and healing to everyone 🌈

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1 reply
ldmcfate | @ldmcfate | Apr 10, 2023
In reply to @cristen1 "Forget Mayo….Find a FUNCTIONAL Nuerologist to help you and possibly a Holistic or Functional Nutritionist. I..." + (show)
@cristen1

Forget Mayo….Find a FUNCTIONAL Nuerologist to help you and possibly a Holistic or Functional Nutritionist. I am using both and healing so much. It is ALL out of pocket expense but worth every penny. Look up Brain and Spine-Dr Harrison Salisbury in West Jordan, Utah. He is on Instagram and YouTube…you can contact his office for a free zoom call…and he can help you find someone in your area or fly to him! Go look at his work! You just need some brain help with lasers and gut help with the right diet and supplements.

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I wouldn’t have to fly - I live in Payson. lol That’s good info. I’ll look into getting an appt with his office when I get home from a week’s vacation in Missouri. Looking forward to lower altitude; I feel better with the extra oxygen.

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lisadunlap | @lisadunlap | Apr 10, 2023
In reply to @law59 "Hi @lisadunlap. Please dont give up. As you are able to read more posts and glean..." + (show)
@law59

Hi @lisadunlap. Please dont give up. As you are able to read more posts and glean helpful insight and resources, you will realize there are things improving. I am 60, little over year post covid, and gratefully not as bad as last year which you seem to be experiencing as so many of us. It seems “true” rest and care for our bodies needed whether few months or years depending on our individual bodies. Just as this year seemed impossible at the beginning, I am able to maneuver now and know I can make it thru the next year to reap the benefit of spending another 40 years with loved ones💖 Hope this helped and healing to everyone 🌈

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Your encouragement does actually help. This is uncharted ground and I thank you so much for sharing your journey and your own hope. It is easy to lose hope when you’ve been slammed and just don’t know how to get better. But I believe you when you say you are making improvement and I can too. Sending love.

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lisadunlap | @lisadunlap | Apr 10, 2023
In reply to @cristen1 "Everyone on this thread…I had muscle spasms, tremors, fatigue and many other symptoms. I AM HEALING..." + (show)
@cristen1

Everyone on this thread…I had muscle spasms, tremors, fatigue and many other symptoms. I AM HEALING BUT it’s all out of pocket expense so go sell some belongings if you need to and go find the following people to help…FUNCTIONAL Nuerologist NOT a regular Nuerologist!
FUNCTIONAL or Holistic Nutritionist to heal gut and brain health. I am on a strict diet specific to ME…you have to do testing to find out what’s wrong with you b/c you have long Covid b/c you had underlying unresolved issues before you got Covid! My functional docs have done exstensive stool, saliva, hair, blood & genetic testing on me. I also do hyperbaric oxygen chamber and infared sauna. Go in Instagram or YouTube and look up the work of Brain & Spine-Dr. Harrison Salisbury (office located in West Jordan, Utah) He is amazing and will do a free 15 minute call with you and also will treat you over ZOOM or help you find a Functional Nuerologist in your area!

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Thank you! Sending love and energy for your own continued healing.

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silverfish0409 | @silverfish0409 | Apr 14, 2023
In reply to @inmetta "Thank you so much for replying. I can't believe your state only has one clinic taking..." + (show)
@inmetta

Thank you so much for replying. I can't believe your state only has one clinic taking pts this year but maybe my state FL is the same. What's also crazy is that doctors are not willing to investigate to rule out other diagnosis. It's like we are medical outcasts. This makes me think we really need to organize. There are so many of us, our voices need to be heard. Thank you again for replying.

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Long covid is going to be alot worse than people even could imagin.you ever notice are medical problems are mostly immune system problems, look up in the Thailand medical news they have real good articles about long covid, there is a major cover up just how bad this is,some scientific research has compared it to airborne hiv look it up Thailand medical news great but scary research.

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silverfish0409 | @silverfish0409 | Apr 14, 2023
In reply to @beebee000 "again these are my symptoms too, they say there are about 200 different long covid symptoms,..." + (show)
@beebee000

again these are my symptoms too, they say there are about 200 different long covid symptoms, i have 30 different ones, i know that sounds crazy or like i'm making it up, it is for real. be for i had covid, i was great, felt great, my bones where fine, now my last bone scan showed bone deterioration, even my doctor was surprised and yes i ache, hips, all my joints, and even my teeth are changing, there are way too many things to list, what the heck is this stinking virus!!!! it's been over 3 yrs for me..hang in there!!

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Check out the Thailand medical news, they have some real good articles about how this virus works,researchers are calling this airborne hiv every symptom I have is like a immune system disease I don't think I will ever recover.

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silverfish0409 | @silverfish0409 | Apr 14, 2023

This is like when chronic fatigue syndrome started doctors wanted to put me in nut house.i would tell them all my symptoms and they thought I was crazy.

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beebee000 | @beebee000 | Apr 15, 2023
In reply to @silverfish0409 "Check out the Thailand medical news, they have some real good articles about how this virus..." + (show)
@silverfish0409

Check out the Thailand medical news, they have some real good articles about how this virus works,researchers are calling this airborne hiv every symptom I have is like a immune system disease I don't think I will ever recover.

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thank you

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