Neurologic Symptoms in People With Long COVID

I’m 3 1/2 years post COVID. My life, body and mind struggle everyday. I need help! We need more Drs who care, instead of saying your just stressed and have anxiety.

I was extremely ill with covid and long covid for about a year. Now, my personality changed. I am more subdued. I am tired and can get exhausted having dinner with more than 2 people. Too much to deal with all at once. I get to bed by 9pm. My favorite activity is going to bed and getting a good night's sleep. I am anxious, and depressed. I feel that I slog thru life. I don't want to be engaged. I prefer to watch the clouds stream by. I am not the same person I was before covid. It sucks.

I had covid back in August of 2023. It is now March of 2024 and i cant take it anymore. Raging headache, loss of of balance, vertigo, brain fog, insane fatigue, pain in the back of my eyes, really bad light sensitivity, muscle weakness.

I tested positive 5 times over 2.5 years with Covid. First time was most severe but no hospitilazation. I have been dealing with long covid since. The longest time between infections was about 10 months. I had just begun to feel improvement gradually over two months, from 8-10 months in my symptoms. But then was reinfected. Right now I am three months since the last infection. Strong constant fatique, brain fog, difficulty getting deep breaths, tiring very easily moving around (for example going up stairs) then gasping short of breath, strong somewhat migrating inflammation pain - all over but particularly in the lungs and neck- intense brain fog with post exertional fatigue, headache. It gets worse and better on different days without being able to ascertain why. Exertion definitely makes it worse. I am not obese and I look good to people. Thus many do not understand. All of this is invisible on quick glance. Unless people are actually with me all day and can see the impact of having a lively conversation for two hours then leaving me in bed with confused brain fog the rest of the day, feeling miserable. This is debilitating! Few people understand. I could feel this interviewing doctor's bias and lack of awareness...jumping to that standard easy and condescending conclusion when they don't know how to explain it - 'isn't it really in their head?' - trope. So irrititating and insulting. I don't waste my time with people who have that level of bias and ignorance about this. I will finally start treatment at UCLA Med Center in October where they have a clinic for long covid. I wish us all luck.

Horrible symptoms. I have brain zaps, anxiety and panic, intense ear pressure, off balance, ackey shakey. This is a nightmare

Thanks for sharing. I’ve been dealing with Post Covid almost 2 years. I have shortness of breath, extreme fatigue, short term memory, as well as heart palpitations. Covid has been an unbelievable journey.

I’m sorry to say this and don’t wish to offend anyone. But thank god for long Covid. Those of us who had CFS, Fibromyalgia and other autoimmune diseases that were not recognised decades earlier. We were told it was all in our heads, now they realise it is a chronic disease and hopefully we can find answers and maybe a cure.

He just described M/CFS something most neurologists mocked and ignored for decades, Why now are they recognising post viral illnesses affect a patient neurologically?

I’ve had chronic fatigue syndrome for over 20 years. Main problem is post exertional malaise. Now long COVID patients seem to be experiencing similar symptoms

For those posting here about your struggles with long covid we are going to assume that you were fully vax'd and boosted, unless you indicate otherwise!

Thank you to the doctor! So many were exposed to Covid at work, and later when they thought they were recovered... experienced serious cognitive issues, weakness, malaise, etc.. numbness, vision problems, etc., and were terminated. Many were unjustly judged as incompetent, treated as if they had Alzheimer's...when they were perfectly healthy before exposure to Covid at work. It's cruel, and inhumane to GIVE someone an illness, humiliate and shame them on the job for it, and then terminate them. Many lost their jobs, finances, health insurance, and were abandoned with hefty medical bills, all due to coworkers giving them the illness. Employers are too quick to judge someone who may be struggling with REAL terrifying post COVID symptoms. Employers should be educated on the REALITY of COVID's cognitive and other symptoms. I also agree that those struggling with long COVID should receive significant govt assistance. Congress can cut their huge pay raises, wasteful spending and needless multi-million dollar witch hunts to do so.

My wife has the most extreme case of LC which became worse and worse after contracting Alpha, followed by three or four other variants. She has some similar symptoms to lupus. She has been diagnosed with Inappropriate Sinus Tachycardia, POTS and Pollen Food Syndrome. She has a healthy heart muscle, but frequent heart episodes. She has bouts of extreme pain in her extremities, sleep disturbance, near dangerous levels of iron, and IGE. She has 9 specialists, and no improvement. In fact it’s getting worse. The Drs can’t approve disability status for LC in Canada and she is sick in bed. Can’t make ends meet in Toronto on one income. Really just at a loss here

Thank you for this video. Female in her 40s…no positive Covid test but suspect I was infected several times with mild symptoms. Been suffering from so many of what I’ve come to understand as possible long Covid symptoms. Recently went through thousands of dollars in multiple tests because of elevated liver enzymes. After several months went by my labs went back to normal. I was optimistic that was the end as I was feeling better, but as had happened so many times previously, after feeling mostly well for a week or two I was knocked down with fatigue among a number of other symptoms that are only manageable because I lead a simple life and have a desk job working from home. I cannot imagine how it would look if I had the demands so many others do. Just started LDN to see if that will provide any relief. But it does seem like whatever is going on with me could be autoimmune in nature. Hugs and understanding for all those out there that have had doctors shaking their heads while escorting them out the door with a stack of medical bills and no relief.

You need to treat inflammation. I had terrible fatigue, brain fog, memory cognitive issues after covid. I'm Still recuperating. New doctor treated me with I meg solumedrol IV steroid. Within hours of treatment the pressure I felt on top of my head lifted. Several days later I could think clearer my short term memory lapses improving. My fatigue also is much better. I nap once or twice a week once a day. Not every day twice or three times. Why do doctors ignore treating brain inflammation. It is documented on MRI scans. They know it's there but don't treat it. I thank God I finally found a doctor who treated it. Look for doctors who will give corticosteroids to treat long term covid inflammation. This is what causes long covid!

He’s forgetting, excessive sweating 24/7 most days, thoughts that are abnormal, extreme paranoia, insomnia, and major weight loss and muscle tissue. I had mild Covid, I was told. It was terrible! 25 months later with Covid twice, I’m worse than ever!

Dr's should really stop dismissing long covid symptoms!!!!!!!!!!

I am having long COVID. I was initially very ill for 2 months, then I was able to get out of bed. Before COVID I worked full time, no neurologic issues. I have ankylosing spondylitis however, and was taking Consentyx when I I fell sick. I am only now able to work 1/2 day, and have to triple check my work as I feel like I did when I had a concussion and the post concussion syndrome. I went to a grocery store twice and forgot my groceries, pretty bad stuff. I'm also exhausted I have to nap every afternoon. I was vaccinated and boosted. I hope I can hang on long enough to get better. I too had crazy heart palpitations and very blurry vision.

Please study long covid patients who develop POTS and PEM 🙏

I completed an ultra marathon just a few months before getting long covid. I wasn't depressed, I was planning my next marathon and training to be an ML before this! I've never experienced anything like this before and it's ruining my life. It's like waking up in someone elses body!

I am injured from 18 months, from 2nd dose of pfizer. My life is ruined, i was healthy and fit. Jabs ruined too many people... And doctors won't help people like me...