The Beginning

Scene: The night of January 23, 2016.  Our main character, Amy, is hunkered down in her apartment, dreading the next day.  Not that the next day is something she'd normally dread—a day full of board games with good friends.  But despite the delights that awaited her, she lay on the couch, tortured by anxiety, dealing with worse than normal period-induced (or so she thought) intestinal distress, and trying to get the agonizing tension and cramping in her legs under control.  Outside, a blizzard raged, shutting down the city.

On the 24^th, Amy trudged four or five blocks through the debilitating snow, past trapped cars and empty intersections, to her friend’s house for board games.  She spent the day there, enjoying herself yet fighting against the growing pain in her legs.  When she went home that night, she doubled up on the potassium that she usually took to control the cramps in her legs.  The unexplained anxiety had grown.  Nausea and intestinal distress, as well. 

The case was much the same on the 25^th, except that the snow intensified.  Amy’s friend convinced her to spend the night on the couch rather than trudging back to her apartment.  When she finally went to bed, however, her legs became unbearable.  She got up and down to use the restroom several times.  When she did lie down, her legs felt unbearably tense, the muscles twitching and jumping.  She tossed and turned, shaking her legs, bending them to try to reduce the pain.  At last, around 5am, Amy snuck out of her friend’s house, made her way home, and
doubled up on both potassium and magnesium.

Over the next week things got, if possible, worse.  Amy’s sister recommended a sports drink high in potassium, and Amy stocked her house full of it.  She remained in agony, however, with nothing providing relief.  At last, on the first of February, Amy went to the doctor.  She tried to explain the pain, the symptoms, but fear and lack of sleep made her incoherent (and seemingly insane).  The doctor diagnosed our hero with stress.

Finally, on the 8^th of February, Amy’s symptoms went into moderate remission.  They weren’t completely gone, but the major flare—as she came to call it—had passed.  She overcame her fears, however, and got bloodwork done—all of which came back normal.  The original test was for CBC with Differential/Platelet, a Comprehensive Metabolic Panel, a Lipid Panel with Cholesterol/HDL Ratio, Iron and TIBC, Hemoglobin A1c, Panel 083935, RPR/Rfx Qn RPR/Confirm TP, Thyroid Cascade Profile, Vitamin D/25-Hydroxy, Vitamin B12, and Ferritin/Serum. 

Flare #2 started on February 12^th, and lasted through the 16^th.  A mini flare showed up on the 23^rd, and was gone by the 24^th.  On the 25^th of February Amy had another meeting with her doctor, who oscillated between stress and restless legs, and at first recommended muscle relaxers, but ended up prescribing Pramipexole.  Our hero unfortunately kept poor records over the next month, but another major flare began on the 25^th of March, was exacerbated by an EMG test on the 30^th of March, and subsided by the second of April…only to flare back up on the 6^th following a high-stress family emergency.  During this time Amy increased her dose of Pramipexole and had more bloodwork done, testing Adolase and Creatine Kinase Total Serum—again, all tests were normal, as was the EMG.  Amy had a reaction to the numbing spray they used prior to the second blood test, but otherwise all else was fine…except that her legs were so painful that at times she could barely function.

This brings us to the present day.  I, as you may have guessed, am Amy, and I’ve been struggling with this mystery disease for three and a half months.  I have started avoiding social engagements and travel, and spend an insane amount of time trying just to function.  There’s a lot more I could write, particularly in terms of background and linked symptoms, but I think this is enough to get us started.  This blog will be my way of tracking both the disease, and my attempts to identify it.