Discussions By Condition: I cannot get a diagnosis.

A Mysterious Illness

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • February 14, 2009
  • 03:51 PM

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?

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4 Replies:

  • 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?Get a second op from another neurologist! I know at least 3 people that it took them almost 10 doctors to finally get a diagnosis.Just hang in there you just have to find the right doctor!Don't give up! I read a little about the dopa responsive dystonia and it said it is inherited, therefore if its inherited then that is the cause but i'm no doctor.A spinal tap could definitely show what is wrong.The high wbc count and protein sound like a poss infection or problem with the liver.If theres an infection in your body it will def give you these symptoms if it hasn't been treated for some time.
    jilliankma 9 Replies
    • February 15, 2009
    • 05:51 AM
    • 0
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  • oh, and my meds include neurotin(200), naproxen(375), sinemet (4 times daily), and Concerta. please let me know if anyone else needs any other type of information.
    Anonymous 42789 Replies
    • February 15, 2009
    • 05:51 PM
    • 0
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  • sounds like cats dont like cell phone masts in their back yard. gotta hunt around them and whatnot. sounds dreadful. why would a cat cat a lumbar puncture or an MRI?? Good question youngin......:confused: Regarding dystonia google Allegheny General Hospital, Movement Disorder Center, Neurosurgical dept, Donald Whiting,MD and Susan Baser,MD they specialize in this, there is a procedure called DBS (deep brain stimulation) there was a tv program 20/20 where it showed Ed Cwalinski who had dystonia, he had DBS done very sucessfully & regained his life. Look into it. Best wishes :)
    Tootsie 628 Replies
    • February 18, 2009
    • 00:44 AM
    • 0
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  • Good question youngin......:confused: Regarding dystonia google Allegheny General Hospital, Movement Disorder Center, Neurosurgical dept, Donald Whiting,MD and Susan Baser,MD they specialize in this, there is a procedure called DBS (deep brain stimulation) there was a tv program 20/20 where it showed Ed Cwalinski who had dystonia, he had DBS done very sucessfully & regained his life. Look into it. Best wishes :)thankyou so much. i have heard a little about deep brain stimulation. its only for when the medicine stops working entirally, right?
    Anonymous 42789 Replies
    • February 19, 2009
    • 05:17 AM
    • 0
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