"Normal Bloodwork" "No answers" Help!

Posted by kaydee22 @kaydee22, Nov 12 10:35pm

Hi y'all! I am 39 years old and a lot of medical history. I will try to keep it short and to the point.
Started period a few days shy of my 10th birthday.
Between ages 13-17 I was diagnosed with Major Depression Disorder, anxiety, endometrioses, and PCOS.
Age 24-25 I was diagnosed with chronic IBS.
Age 27 - Interstitial Cystitis
Age 30- Had a baby followed by tubal
Age 30 - ADHD II (combined type)
Age 32 - Eczema and shortly after Psoriasis
I have sores in my scalp with baldness.
Somewhere between 2021 and now my health started to really decline. I've had covid 13 times. Some severe some not. The last time about 6 months after having covid my hair started falling out.
In 2023 I had a totally hysterectomy. After recovery that was the best, I felt in a long time. Which was short lived. The end of July I got really sick, I thought it was my IC acting up but this time I actually had an infection. 3 days and I still felt the same. I called the doctor to tell them I had no relief and my back and chest were hurting. They suggested that I get an appointment with my urologist. I request appointment and fell asleep. I slept a full 24 hours; I was weak, nauseous and had severe brain fog. I ended up in the ER. They did multiple test and blood work. Blood work showed I was sick, but they could never give me a straight answer. 14 hours later I was sent home.
The end of 2023- my stress level increased. Work, kids, life and the unknown of the way I felt have a big part in this.
2024-Current - I 've gained 40lbs, my vision has decreased, I've had episodic anisocoria, blurry vison, my jaw hurts daily along with piercing pains in my ears, my emotions are all over the place. I have neuropathy in hands and feet. I can't sit or stand for long periods because my body will get stiff, and it hurts to move. My sleep scheduled is so off. I could sleep for days, or I could stay up for days.
My most recent episode of being sick consisted of my whole body hurting and being week, sleeping for 18 hours, going to the doctor, bloodwork showed infection but no answer to what it was. During this week I didn't eat, I drank when I was awake and alert. Twice during that week, I lost control of my bladder and peed myself when I was asleep. All of this is mentally and physically exhausting. I am sick of telling my children and family that I don't feel good and miss out on so much. It breaks my heart. It's taking a toll on my work and work relationships. I've had an MRI showing lesions that they listed as chronic migraines. I've seen a neurologist ophthalmologist who seems very caring and wants to continue seeing me to monitor vision issues. She looked at my MRI and noted that my pineal gland is enlarged and will monitor. Just this month I have seen an immunologist and rheumatologist. Immunologist seemed to listen and willing to help. Rheumatologist told me "I don't know what to tell you, but I don't think I can help." I asked him if he could point me in the right direction and I never got a clear answer. I left crying and feeling discouraged. Right now, I don't know what is next, but I am up for any guidance, encouragement, prayers etc... I am sorry this is so long. If you got this far, thank you for taking the time to read this.

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visionandbreath | @visionandbreath | Nov 15 3:23pm

I'm not a doctor. I have mysterious health too. My blood work is usually normal. Has anyone looked at vasculitis?

rodeos | @rodeos | Nov 16 1:18pm

I’m an 63 y/o female, former nurse with Chiari malformation, fibromyalgia and chronic migraines. I have experience as a nurse and a 30
Year history of experience as a patient. I’m really hoping a moderator will speak into you post.
But in case no one else does here is some thought from my own experience. An enlarged pineal gland isn’t normal and can cause a lot of go awry. Seems to me the doctors you’ve seen should have directed you to a neurologist minimally, and a neurosurgeon especially.
Your nervous system sounds broken and neurology is where your doctors are. Of course you need a good primary doctor too! You didn’t mention what part of the country you’re in, so you could check to see which mayo is closest to you. I pray that you will find friends and advocates who will help you figure out and manage how to proceed. Sick people need help and you deserve to be helped.
When a doctor tells you something is wrong but doesn’t give a diagnosis, or does not send you to someone else for a referral, this does not set right with me. It’s not how it’s supposed to be. Praying you are helped soon. It’s been going on far too long.

loriesco | @loriesco | Nov 17 9:05am

I didn’t see anything about mental health doctors in all of that. I suggest you combine a mental health doctor and get some therapy to deal with the trauma of what you’re going through. They might have some ideas to help alleviate some of what you’re experiencing. I don’t think it’s all physical. I think there’s some mental you have to deal with as well. I am not saying this is all in your head, but I’m saying that you’re paying total attention to the physical and neglecting the mental. Good luck. Sounds like way too much to deal with. As an unbiased reader, it seems like good old-fashioned “neurosis“ (anxiety) . A lot of of what you mentioned. Sounds like out of control anxiety when I read it some of your symptoms and manifestations can be exacerbated and made worse by anxiety. I have those same things, but I have to deal with them and not let them get out of control and then feed on each other. For example, the IC meant six months at a urologist who treats that a dietary change. And when Imeant six months at a urologist who treats that anna dietary change. And when I feel the IC coming on. I have to look at my diet and change it. I keep over-the-counter pyritadine in the house and take that for a day or two while I change my diet. I’m not saying it’s all in your head. I’m just saying that you’re going to need to start addressing your anxiety around it to lower the temperature. And for God sake, please figure out why you’re getting Covid. Wear a mask when you are out in public and be sure you are getting vaccinated. I work around people and I refuse to get Covid so I protect myself. Good luck.

fourleaf | @fourleaf | Nov 19 1:08pm

@kaydee22 - See link additional info
https://connect.mayoclinic.org/comment/1442595/
I have started drinking Chamomile tea at 8:30pm, after night medications. I also take Ashwagandha 300mg at Noon and with night medications. “Ashwagandha may help reduce stress, anxiety, and cortisol levels, with clinical trials showing benefits in improving sleep quality, reducing fatigue, and enhancing psychological well-being." (Been around for 2500 years - who knew.) What I have learned, having higher cortisol levels messes up a lot.

Recommend checking at https://www.mayoclinic.org/drugs-supplements for any drug interactions, side effects, even the drugs you currently take. Sometimes better than the Doctor’s Drugs check database.

Graphic below is from The Yale Study Long Covid - Post Vaccine Syndrome

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