Symptom onset- June, 2014: Attack began resulting in vomiting (not out of stomach pain, but out of the sensations) Felt as if needed to go to hospital, but shook it off. Continued happening and has not ceased. No symptoms present before onset (or at least no awareness of symptoms).
-Tingling in hands, feet, and thighs
-deep pain that feels pseudo flu-like without the accompanying fever/congestion; essentially weakness “deep in the bones.” (particularly rib cage and back). Fatigue/weakness.
-Feels as if my body is pulsating/knocking, with particular emphasis on my spine (middle of back).
-Flare-ups extreme exacerbation of symptoms: tingling in hands and feet, disorientation, feels as if body is snapping/ collapsing inward, feels inflamed in brain and spine. -Constant, all most daily, flare-ups that last from a few minutes to a few days (can have multiple in a day).
-When not “flared, brain fogginess, weakness, fatigue present, but occasionally dissipate and body can return to approximately 90% normal ( on occasion).
-Episodes in which the body feels as if it is spinning (akin to “the spins when intoxicated,” but motor skills and balance are fine). Particular noticeable lying in bed.
-Exercise and heat induce flares; inability to sauna or exercise because attacks ensue/Cannot stay up late or a flare-up ensue.
Tests/ Procedures done(All Normal)
-Extensive blood work
-Mri Head (w and w out contrast), Neck, lower back/ spine (w out contrast).
-CT scan of head and neck, w contrast
-EMG/ Nerve conduction studies
Although this has been going on for almost 2 years, I am still alive and essentially fine. My motor skills are normal i.e. still can throw a baseball 85 mph, bench press 200 lbs, run. Nothing has ever resulted in a difficult flare-up, but to simplify, I consistently feel fairly bad daily, with episodes that are unbearable.