- CASE FILE
19 years old in the best physical health of my life. In a few weeks I went from carrying 90 lbs of dog food daily, to being unable to stand
ABOUT THIS CASE FILE
I am 19. I look perfectly healthy. I’m a little overweight, but when these dramatic health issues started, I was close to my goal weight. I worked at a pet store and was up on my feet all day. I could carry 50 lbs of dog food across the parking lot
June 2018 First thing was some vision issues at night. Barely noticeable, but my very minimal prescription hadn’t changed since I was 16. I didn’t even need glasses.
January 2019 I started having some hearing issues. I could still hear, just not as well. There was no wax or infection, and my hearing test showed normal limits. A few weeks went by and I started having to take more breaks at work. I’d have to pause before climbing ladders and it just took more effort. I started noticing my heart rate shooting up on my Fitbit even when I was laying down. By early February I was on a course of antibiotics for a possible ear thing causing dizziness, which I later learned was more lightheaded was and fatigue.
Mid February 2019 I was at work, and could barely walk. I couldn’t clean fish tanks because I was risking falling off the ladder. I went to the ER, and they gave me fluids and ran labs but couldn’t find anything so they sent me home since I could still walk. Three days later, I was eating lunch with a friend and my arm was too weak to hold a fork. That night my chest was getting tired from breathing so I went back to the ER. They suspected MS, and ran a bunch of imaging and lab work, did a spinal tap, and I was in the hospital for a week. My heart rate was dramatically jumping up with any movement or activity. I’m talking over 120 bpm for rolling over, and over 140 bpm when walking.
They had a psychiatrist come in to do an evaluation because they couldn’t find anything. Psychiatrist said it doesn’t look psych but the doctors couldn’t find anything else so they diagnosed POTS (postural orthostatic tachycardia syndrome). I did not have a tilt table
I wasn’t fatigued because of my heart rate. My heart rate was shooting up because it took all my energy to move. I was in the best physical and mental health of my life. Symptoms were gradual over a few months until the last few weeks where it was more sudden
My heart rate is more stable with a low dose of aspirin, but none of the treatments used for POTS helped at all. Nobody has any idea why. I cannot walk farther than partly down the street and back. My muscles spasm with activity, and every muscle in my body gets extremely fatigued with use. This includes my face with lots of talking, my hand when eating with a fork, my legs when walking, my chest from sitting up. I use a wheelchair for distance and my cane for short walks. My legs give out randomly but I’m short so falls don’t hurt. I cannot work, cannot drive, and my social life has been severely impacted
ESR has been elevating since February. It went from 19 in Feb to 29 in May to 50 in July. Back down to 24 now
Vitamin D~14 in Feb. 34 in July. Taking supplements
Ferritin~15 in Feb. 33 in July. Taking iron.
CBC, white count, copper, ANA, MG antibodies, kidney and liver tests, Lyme, thyroid, lupus, B12 and everything else were all normal or negative
Spinal tap was normal for whatever they tested in February
Chest X Ray was normal in February
Brain, Cervical, and Thoracic MRI w/o contrast were normal in February
Chest, Abdominal, and pelvic CT with contrast were normal
Major fatigue in every muscle in my body
Twitches in muscles
High heart rate with activity, but it doesn’t get as high or stay as high as it did. Aspirin helps for some reason so I take low dose aspirin daily
Decreased sense of pain. I feel the sensation, but it doesn’t really hurt.
Decrease in fine motor skills even in muscles unrelated to the ones being used and fatigued (example: walking and standing for a distance and my face and arms get twitch)
Decrease in fine motor skills with use of said muscle (example: eating a big dinner with a fork and my arm gets tense and twitchy)
Blurriness when tracking fast moving objects
Slight ringing in ears
Slurring speech and grinding jaw after prolonged talking
Low grade fever (99.2–99.8) for 5 months for most of the day, almost every day
Brisk reflexes in legs and clonus in ankles
Family history of MS(uncle), and lots of different cancers in every generation on my moms side. Mom passed from Hodgkin’s lymphoma at 25. Dxed at 21 with stage 4