Medical Mystery: Living with an undiagnosed chronic illness

Описание: My life completely changed in August 2020 when I came down with a chronic illness that's been a medical mystery. Doctors haven't been able to diagnose what chronic illness I have for the past year and half. It took me 9 months to recover the first time around, and the journey has been super exhausting.

TIMESTAMPS
00:32 My life before
00:51 Initial symptoms
03:12 How I suddenly became very sick
04:47 My symptoms
09:57 My experiences with healthcare providers (largely frustrating)
13:55 Healing and then relapse

MY LIFE BEFORE
My symptoms came out of nowhere. Before all of this I had been a healthy person who'd go to the doctor once or twice a year and have a clean bill of health.

INITIAL SYMPTOMS
My first symptoms were primarily skin rashes and inflamed hair follicles (folliculitis). There came a point where I had rashes all the time. The itching was so intense I'd spend all day and all night scratching myself to the point my skin was bleeding.

After a while, I took a heavy dose of Bactrim (an antibiotic) prescribed by a dermatologist. It helped a little bit, but then I started breaking out in a full-body rash where it looked like I might have vasculitis. Then, I got a fever (mind you this was a few months into the pandemic) and tested for COVID which came back negative.

After the fever, I felt great for around 2 weeks.

SUDDEN SICKNESS (nothing has ever been the same since)
One day I woke up in August 2020 and nothing has been the same ever since then. My face was numb, and my coordination was completely off. I had severe cognitive difficulties where I would start to form sentences and completely forget how to finish them or what words to use. My memory was completely shot. And, my eyes had issues where it felt like I was losing my peripheral vision. When I looked at a digital screen (i.e. phone, computer), it felt my eyes were rolling in the back of my head and I'd suddenly lose vision at times.

I had dizziness/vertigo episodes, and I felt I would black out depending on how my head was positioned. When I was in a car, I'd instantly become drowsy and completely out of it. I felt depersonalized and experienced derealization. And, I had to try to work a full-time job at the same time while all of this was happening. I'd take multiple naps throughout the day because I was so tired and sick.

All the things I did unconsciously before (especially with movement) such as holding a cup, opening a vitamin jar required conscious attention and effort. I worried I was losing myself and becoming disabled.

MY SYMPTOMS
Besides what I listed above, I had a ton of symptoms. A lot of the symptoms were neurological, but I also had a ton of rheumatological symptoms (i.e. joint pain, muscle aches, hair falling out more easily, joint swelling).

Anything would induce an allergic reaction (one doctor thought I had mast cell activation syndrome). I tried tracking my diet and every type of product I used (i.e. laundry soap, personal hygiene items, etc.) and couldn't find a pattern as I was reacting to everything.

One of the worst ones that I still have till this day was nonstop head pressure/tightness. I wondered if I had idiopathic intracranial hypertension (pseudotumor cerebri).

I also had symptoms of Postural orthostatic tachycardia syndrome (POTS) and dysautonomia.

Full list of symptoms: https://bit.ly/3HCuFwD

HEALTHCARE PROVIDERS EXPERIENCE
My experience was largely frustrating. Kaiser didn't take me seriously and thought I was being a hypochondriac. I found some osteopathic functional doctors who wondered if I had Lyme disease, mold poisoning, heavy metal poisoning. I also went to a Chinese medicine doctor which I thought was quite helpful.

There were times I felt I should've gone to the Mayo Clinic because it seemed no doctor could figure out what was going on with me.

HEALING AND RELAPSE
It took me around 9 months to recover from my first episode in August 2020. In September 2021 I started to have similar neurological symptoms happen again and I started to have numbness/tingling/tightness in my limbs (especially my legs).

To this day, the numbness/tightness hasn't gone away in my limbs and shows up on other parts of my body.

The neurologists I'm seeing are testing me for Lyme disease, multiple sclerosis, neuromyelitis optica (devic's disease), vasculitis, other autoimmune diseases (i.e. lupus, sjogren's), as well as seeing if I have any viral, bacterial, or fungal infections. So far things have largely come back normal (thank goodness for that).

However, it's been an extremely arduous journey of living with an undiagnosed chronic illness. It's been a medical mystery. I never made a full recovery, and with the recent flare of symptoms I'm worried my condition will continue to progressively worsen. Not only that, I've been in constant pain since May 2020.

This is my story, and my journey.

RESOURCES
Chinese medicine doctor for autoimmune illnesses: https://modern-vitality.com/