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I've had a CT but would prefer an MRI
Post-COVID Recovery & COVID-19 | Last Active: Dec 21, 2025 | Replies (18)Comment receiving replies
Hi @pj1968. Just read this post and hope my comment didnt miss something else important prior🙃 first, I am voice texting as my brain was affected by Covid and my vision and words, fluctuate and feel I understand your frustration. I spent the first couple of years finding the resources and convincing providers of my daily challenges. as I believe the loss of my father, then my mother well trying to deal with Covid also gave providers wrong impressions, knowing something more was going on. May I suggest you contact patient advocate Kaiser to help you compile your medical information so your primary care can refer you to a Neuro physical therapist who has experience with these Covid rehabilitation issues. If I may further share my own experience, but some doctors are aware that Covid creates such sensitivities that an MRI can bring on more symptoms so they have to weigh the benefit. And if I may further suggest if they are able to provide a trauma level mental health provider who has the resources to help you get these higher-level services and truly understand these exceptional challenges that can help you in all way, Wishing you the quickest healing journey 🌈
Replies to "Hi @pj1968. Just read this post and hope my comment didnt miss something else important prior🙃..."
I wanted to mention that I found out I had dysautonomia after I went to Mayo. This includes brain fog.
My doctors missed the conditions related to POTS and IST. The Holter monitor and Pulse Oximetry showed it. The fatigue is from extremely high heart rate regardless of exertion, body position, or even while asleep. My oxygen levels were also erratic.
The fatigue has something to do with - at least in part - obstructive sleep apnea. I'd given up on CPAP because it "wasn't helping", but I figured out I needed a different kind of mask that prevented leaks. So, I'm back on the CPAP wagon.
I've had every lab test in the world. I even paid $1000 out-of-pocket for extra labs from Function Health and for hormones. I was checked for over 200 areas of autoimmunity. I've had MRIs and CT scans (with and without contrast) of my brain. All normal. Almost three years with no answers. I thought I was going out of my mind.
@law59 Many challenges from having Covid 19 about 3 or 4 times and mostly challenges from 6 booster vaccines .. not realizing Covid 19 the blame until too late. Parkinsonian symptoms effecting gait and balance, brain fog peripheral neuropathy 2021 vaccine! Still have this! 2023 vertical heterophoria.. misaligned eye vision. Eyes do not converge! Further turning my life upside down. Health in decline!
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@law59
Thank you for reply. I, too will sometimes use voice to text when I am having especially hard days. I'm very sorry you're dealing with this on a much more secure level than I. My cognitive function has improved some but I still struggle and at times it's almost like I have aphasia. Physically, I have very low stamina. The fatigue is just so frustrating. It has been my daughter and I since 2011. I've rehabilitated my backyard, I was always strong, ran 5ks, mud runs and for a good long while could hold a 4 minute plank. Now I have to nap every day. And as for trauma therapy, I will be brutally honest. I am an abuse survivor. I've been in therapy off and on since my 20's. My father s-abused all three of his children. My brother's death in Feb. 2025 was no doubt related to the PTSD that haunted him. He was an alcoholic and his heart simply gave out. My sincere hope was that after our dad died, my siblings and I could process our abuse and PTSD together. So, the death of my brother, at just 62 has created a whole new kind of sadness and anger. And to have to deal with this while battling LC has almost been too much. My daughter is 24. And it's for her that I have kept going. But recently I realized that I'm worth it to keep going, too. It's crazy how much I can hate myself for something I had no control over. And now LC! I'm pretty pissed. So I'm turning my anger into action and finally advocating for myself. And I have to accept that life is different, but it's not over. I'll adjust and find a new way to live. After the death of my husband, I had mostly survived more than thrived. The focus was always on my daughter. Bless her. She was 2 weeks shy of turning 10 when she lost her sweet Daddy. So, I thought I was a pro at dealing with grief, and with remaining strong. This last year has knocked me off my feet. But I'm back on my feet. Take good care.