i am 17 years old. i wake up in the morning by literally rolling out of bed. alot of mornings i fall down cause my legs are so weak.
i was origionally diagnosed with dopa responsive dystonia, but the meds are no longer working. many days i use a wheel chair to get around because my legs are either so weak i cant walk or so tense they wont bend.
my arms are always up to my chest, my wrists cocked in at an odd angle. when my doctor pushes on the bottoms of my feet, the pain is tormenting. my neck has absolutely no strength. when it falls backwards, i need to lift it back up with my hands. ive been so weak theres times when i cant even hold my blatter.
it cant be dopa responsive dystonia because i sometimes wake up to my feet locked up in a dystonic position. if this is dystonia, what is causing it?
ive been losing weight for years. im 17, and weigh 96 pounds. i used to get attacks of abdominal pain that left me withering in pain. now the attacks are less often. my urine is brown randomly, and blood has been in my stool as well intermittently.
i also get lesions on my skin intermittently. these are consistent with the abdominal pain. one of my eyes is noticably bigger than theh other, yet i do not have MS. my neurologist also said its unlikely i have parkinsons either. i dont know exactly where this leaves me...?
my legs and arms seem to vibrate, and then later pain like someone is sandpapering my bones is present. i am over flexable and nearly every part of me is double joinited.
my MRI was clean, EEG was clean, blood work all negative except for random high white cell counts. urinary test has shown protine intermittently throughout the years with blood. protine has also been in my eyes. swollen cornias, loud ringing in ears, and hullucinations have racked me for years.
and yet no diagnosis. any help?