I've had a CT but would prefer an MRI

Apologies. I didn't intend to finish my post that I'm a widow. Sheeze. I meant to say more. I need to double proof everything I type!
BUT-I would like to update my post by saying I emailed both my Psychiatrist and my GP yesterday insisting (noting it's a 2nd request ... and I was cordial about it ☺️) I also provided a link to a new study of LC and its direct connection to Chronic Fatigue Syndrome, and in some people, there are permanent changes to the brain.
I must remain hopeful that we will continue to see more and more studies published about LC. My own GP told me in August of 2024 that there is still so much they don't know about COVID and it's various mutated strains. I dodged COVID until 2023. Had a mild case, the in May and July of 2024, I contracted two different variants. And because I was infected twice and such a short time, I could not get a booster. Then by August, I was no longer myself.
BUT I know I must be my own advocate. This has gone on so long and there are many in my circle, including my doctors, who want to attribute most of my symptoms to grief and stress. I KNOW MY BODY! I know something is wrong. I'm not crazy, NOR am I a hypochondriac. 😞 I was rarely sick pre COVID. I ran 5ks, mud runs and worked out consistently. I'm 57 but now, some days I feel 87.
Ok-vent/rant over. 😊👍
I hope this comment encourages anyone living like I am to keep fighting. ❤️

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 🌈

Have they run tests for an underlying infection? I had internal shingles and did not know it and my brain did not work at all!

How terrible for you. I'm so sorry.
No test for shingles. But my symptoms all symptoms point to LC. I'm having an MRI Saturday

@drbf
What is "internal" shingles?!

@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.

@sandguy

It's called zoster sine herpete. Like many conditions we have after COVID, it is a reactivation of the chicken-pox virus, minus the rash.

I had brain inflammation, Ramsay Hunt (facial paralysis and a plugged ear for a couple of years). I lost hearing in my left ear. I had nerve pain. There have been random swellings in my lymph nodes. My gut has been a disaster. I frequently required IV fluid therapy regardless of what my gut was doing. The worst has been crushing fatigue. The brain inflammation made me crazy. I couldn't think, write, remember, pay attention, or sleep.

I also thought I was getting dementia!

I've had it twice since I first got COVID at the end of 2022. The last time was in Sept. 2025. I was in the ER for stroke symptoms, but it was internal shingles again. I had sudden facial paralysis and tingling on one side of my body. I'd been to the doctor three times for leg pain. I'm still having problems with pain and deconditioning in my left leg from that bout. It started with excruciating leg pain in mid-August.

I ended up with three kinds of dysautonomia from Long COVID; fibromyalgia, Inappropriate Sinus Tachycardia (IST), and Postural Orthostatic Tachycardia Syndrome (POTS). The last two mean my heart rate is elevated most of the time, including while I'm asleep(!), and anytime I get up from sitting or lying down, or anytime I lean forward or bend at the waist. I didn't know I had those until I went to Mayo in November 2025.

Good times.

@law59

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.

I do have sleep apnea. I was diagnosed pre COVID. It isn't severe but enough that I was given a CPAP. I just cannot handle the mask or the nasal cannulas. I find if I sleep a little elevated, it helps.
As I write more, I remember more of my ongoing issues. Lordy. I have a document saved with all symptoms I've experienced since LC set in. Some symptoms are gone (internal vibrations in my torso, pulsing in my head, esp between my ears).
But I have developed high blood pressure. I had no idea I had it until Fall of last year when I donated blood. My blood pressure has always been normal or on the low side. The standard screening for donation includes a BP check and mine was high. They took it 3x's to confirm. So I was turned away. I was shocked. Then about 3 months ago I started feeling my heart race. I have an O2/Pulse oximeter that I used when I contracted RSV in 2022. I have asthma so I knew something was off. I never had RSV and it felt worse than pneumonia. I had my daughter pick up the oximeter and my O2 was in the high 80's. Scary. Anyway, I used the oximeter when I felt my heart racing and it showed my resting HR at 120. So I messaged my doc and she said it could be lack of hormones. Really? I had a radical hysterectomy at age 38 (had undiagnosed endometriosis. Developed a large endometrial cyst on one ovary at age 20 and had it removed. Low dose birth control kept the endometriosis under control. Long story short, I married at 24 and eventually stopped BC to try for a child. After about 8 yrs my husband and I had all but given up on becoming parents. We chose to not try IVF. We were considering fostering then, surprise, I got pregnant at 33. Miracle! Since I was able to breast feed, my cycle was on pause for about a year. But about 3 yrs later, endometriosis came roaring back. I had a small cyst removed in Feb. Doc wanted me to go back on BC but I really wanted to try for another child. It was not to be.
By August, cysts were everywhere. My doc said the only option was a radical hysterectomy to be sure all endometrial tissue was removed.
Did HRT fir about 2 yrs but at that time, HRT's were known to cause breast cancer. I did not want to take a chance so I stopped. Never had issues other than developing osteopenia in one hip. So I take 2400 mg of calcium a day and my bone health has remained steady. But I know endometriosis is a type of autoimmune disorder. I was perfectly fine post hysterectomy.
But the high BP came post COVID then in June of this year the heart rate started fluctuating. Doc ordered an EKG but results were normal. Doc attributed it to anxiety. I now wear my ol Fitbit to
Charge that alerts me if my heart rate spikes. It's nuts. I have been on Psych meds for years due to PTSD. My resting HR now averages low to mid 80s at 3am PST. Recently I tried to donate blood again but was turned away because my HR was 103. Can't be over 100 to donate. So, my main symptoms are now mostly HR, cognitive/memory issues and the fatigue that I am SO tired of! (no pun intended 😏).
I'll have my MRI on Saturday and it will probably show nothing as my CT didn't in Jan of 2024. I will apply for SSDI and pray that I'm not denied. I don't have funds to hire an attorney. But I know I cannot work. I'm currently working remotely, P/Tand it's not going well. I'm very slow and that's working from home! If I were to try to work in-office (that's supposed to start in January), I would not do well.
So, I will contact Kaiser, who actually called me yesterday to discuss SSI.
I need to end this here. Not much more to say.
I appreciate this space to share, vent, to just talk to people who get it.

@pj1968 I am literally tearing up, and I’m not even trying to compare yet I had my own life challenges and was extremely physically, active both professionally and personally taking care of my children and mother. My family dynamic was similar as well. That’s why I was so grateful to find a trauma level provider for the Covid issues beyond physical and PTSD issues of past. I hope the CPAP works for you as I found if I wear it for eight hours whether I’m asleep or awake it does help maneuvering symptoms the next day 🙃 I am cheering you on in your warrior spirit healing journey 🌈