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Anyone else told their medical system has no neuro willing to treat?
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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As I have posted many times, Covid has become a financial risk analysis by doctors, insurance companies and the parasuicidal industry. Yes, they created a new vaccine that fools our immune system into attacking fake coronavirus cells in our bodies without utilizing the real virus. Now our immune systems are attacking a lot more than the Covid cells and we are getting the long-term effects (Long Covid). The real problem is not care for covid related symptoms but rather diagnostics to determine organ damage. I have periods of rapid heartbeats, fatigue, dizziness, fainting, nerve pain, double vision, shortness of breath, brain fog and continuous headaches. I would love to know if I have damage to my heart, lungs, brain or nerves yet after a year of excruciating pain, I've had one X-Ray that showed bone deuteriation, a follow-up with an osteoporosis scan that showed no osteoporosis yet did not explain the bone deuteriation nor the severe pain in both hips. Oh yes, I saw a psychiatrist who thinks I'm arrogant (That was 6 months in) If she saw me today, I'm sure I would be committed.
They don't want to know what ails us or why because, this is most certainly a human screw up and once its determined by whom - someone will have to pay the bills rather than leaving the patients to die. We need a class action suit and single payer plan for our medical coverage because we cannot trust our insurance, the parasuicidal industry and regrettably our doctors.
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2 ReactionsDon’t be fooled by the media. This is a man made Chinese Virus with the help of Dr.Faucci.
They only go as far as to the possibilities, because of the implication of revealing the truth. I remember watching the doctors from the lab video. That was quickly taken down and no one ever heard of them again. OUR government doesn’t want to acknowledge either officially, because it would mean WW3 against China or another January 6.
I would suggest the world unites together and sue China and the reparation from that would be all debts to China are forgotten. I think that could be possible with leaders with guts and not playing nice, if need be.
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2 Reactionsagain 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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3 ReactionsI 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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2 ReactionsNo one wants to listen, they think we are making all this up. We are the only ones who actually know how we feel and I would love to trade places with them for one day.
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1 ReactionHi All,
I appreciate y’all sharing. I have a feeling I will find the same issues in my medical care system. I am experiencing a symptom - but this is the first time I have had it isolated, on its own. From what I have been reading it - internal vibrations all over my body… the feelings of shivering but not shivering, tingling and pain like a limb that has fallen asleep but is regaining circulation.
It is distracting. It wakes me up multiple times a night. I cannot focus.
So it seems if this doesn’t resolve I will have to seek a neurologist, which are really hard to get appointments with and may cost $$$. But I have also been reading that Drs don’t know what is causing this… so do I spend the time going and getting expensive tests at this point? Or do I wait a year or so to wait for researchers to come up with a solution? Has anyone found a resolution or a way to reduce this?
Also, is anyone here working specifically with a Long-Covid team? There isn’t one in my area and just wondering if there is hope when working with a team instead of fumbling through different drs offices after begging their primary care Dr to refer them… and then waiting months to get in?
I’m so exhausted and defeated with all of this. I am lucky to have a good job with a pre-Covid history of health and strong work ethic, job protection through FMLA, and a support network of family and friends. I have missed so much work the past 1.5 years I am worried. I had a pre-Covid active lifestyle and now I can only intermittently be active… gaining 25lbs in a year.
But beyond that I am worried about the medical bills that are not covered by heath insurance.
I can’t imagine people having to go through this without all of those support elements.
Thank you all for being an understanding community. I wish everyone improvement and a kind and compassionate community.
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4 ReactionsWow that sounds terrible. I see an amazing nurse practitioner in a long covid program. I did finally get into a neurologist, self pay and I am referred for a neuropsych eval, all have been coordinated through the program. As for the neurological symptoms, there are many other conditions that cause really unusual neurological symptoms. I see patients in rehab who describe all sorts of things and go to specialty clinics all over the country, with insurance paying for treatments that are very expensive and they have no idea whether it's going to work or not. Some get better and some do not. Somehow adding long covid precludes us from the same extensive testing and treatment. I would definitely see a neurologist to rule out anything else. All of my testing was basically normal, and covered by insurance. I found other general practitioners wanting to help but have no knowledge, so maybe you could find a long covid specialist online? And then see specialist if you have a specific need such as cardiologist...
Wishing you all the best
I also suffered from the same internal tingling and vibrations, primarily at night, which seemed to be related to the chronic and widespread pain I had developed from long Covid, as the tingling and vibrating sensations always seemed to be focused in the areas where I was experiencing pain.
It was a rheumatologist I saw (the second one) who finally diagnosed me with long Covid, and he put me on a three-week course of prednisone. That, along with following a strict, low-inflammatory diet is what seems to have fixed me.
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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3 ReactionsEveryone 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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