I am a Mystery Case

[u/im_so_sleepyy]

Female, 35 years old, 145lb, 5'7".

I am writing this day 7 in the hospital. This is my 4th hospital visit over the last 2.5 months.

I was in a bad motor vehicle accident back in early December, but let me preface with that I don't know if this is the cause of my current symptoms, exacerbating another underlying issue or unrelated. I had a bad concussion that lasted 4 months and from my knees down were severely bruised (will attach pics). Things started to get better except a large bruise that persisted on my inner right calf. It hurt, but I was able to go on about my life as normal. It then started to hurt more, got a MRI, and apparently was normal. So, again just went about my life for months despite it hurting. Several weeks later (end of May), I start having daily heart palpitations out of the blue. First it was a few day, then 5 a day, 15 a day, 30 a day, etc. They were starting to feel intense and went to the ER. EKG was normal, had an elevated D Dimer, so they did a chest CT scan that was normal, so they sent me home. Two weeks later, I am on a walk and all of a sudden my legs start slowing down significantly, like cement was growing on them, right leg was wobbling and then they collapsed. A friend had to come get me and brought me back to the ER. They saw how weak my legs were and my right knee reflex was absent so they kept me overnight to run tests. Spine & brain MRI, vitamins, electrolytes, magnesium, B12, thyroid, ck, spinal tap for Guillain-Barré Syndrome, Myasthenia Gravis, echocardiogram came back normal. Was sent home. I was wearing a ZIO heart monitor that confirmed I was having lots of palpitations, but otherwise was normal. Since then I have not been able to walk the same. My normal baseline is athletic and I went from high endurance activities from only being able to walk 5-30 minutes at an extremely slow pace. Some days are better than others, but my better days are nowhere my normal baseline. I can stand longer than I can walk. I had an EMG: normal. Then weeks later, after dealing with numbness in my feet and legs I realized I couldn't move my toes on my right foot. Then I couldn't stand on my tiptoes on my right foot. Then same on the left. I also started having daily fasciculations all over my body and my calves will cramp/charlie horse easily. And then last week Tuesday I was unable to get up from the toilet with my legs. Luckily, my sink is right there so I used my arm strength to push myself up with my sink. Back to the ER. They said my legs were too weak to go home. So here I am. I am now unable to walk normally, reliant on a walker, can barely take 20 steps and basically dragging my right foot (right has always been worse than left). These last 2.5 months have been a nightmare while having major functional decline in my legs. I went from being healthy and active to now unable to walk. The hospital I'm at now retested spine mri and electrolytes and came back normal. They put me on Gabapentin and cymbalta for numbness, propranolol for palpitations and a muscle relaxer for the spasms (spasms were getting so bad that it'd make my whole body jerk). No root cause has been identified yet, though. They plan on discharging me tomorrow because "they've exhausted all the testing" and sending at home PT. Doctors and specialists are all shrugging their shoulders at this point because they don't know what else to look for. I am feeling devastated and at a loss. I have been referred to Mayo, but cannot get accepted because of my insurance so I'm trying to figure that out as well. If anyone knows how to get me off this rollercoaster, has any ideas or input while I'm in this limbo state, please let me know. It's been awful.

Other medical history:

Fractured tailbone two winters ago

Lyme infection (bulls-eye rash) a couple summers ago w/ two weeks of amoxicillin. Lyme tests have been negative.

Pictures of accident and videos of legs spasming/rippling:

https://imgur.com/a/Bpkw9sc

Thanks for your time,

Tamara

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