I've had a CT but would prefer an MRI

@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.

@drbf I can so relate and if I may suggest wearing cpap as kong as your provider shares safe, whether awake or asleep like 8 hours at night, as I know even its pressure with these new post covid lungs for some can be triggering yet the benefit maneuvering symptoms. The next day seems easier! Quickest healing journey to you 🌈

@drbf I can so relate and if I may suggest wearing cpap as kong as your provider shares safe, whether awake or asleep like 8 hours at night, as I know even its pressure with these new post covid lungs for some can be triggering yet the benefit maneuvering symptoms. The next day seems easier! Quickest healing journey to you 🌈

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 PJ, I pray for you, as I do for all of us suffering from what we believe to be post-covid…

I am currently 47, but have been sick since 2020. I have not worked in-person in my office with any regularity since 2020. I am finally being let go as I am not really able to work from home - but that is another story.

I too was probably in the best shape of my life, but started having myriad issues (gastro, upper-respiratory, throat, nasal - and terrible fatigue).

I too have Kaiser, and they are the absolute worst health care system. The doctors pass the buck, have no idea, and then just blindly prescribe medication and if you press them on anything, they say they have no idea. I absolutely don’t know how that’s even allowed.

At any rate, this is more of a rant, because when I read that you had Kaiser and had been treated as poorly as me, I just go incensed…

Keep us posted and good luck to you and to all of us.