my story

i was born december 23rd 1985. i was 10 days early. from the begining, i had alot of spasticity in my legs... i could not walk flat-footed untill i was about 6 or 7. i had a very old-time pediatrician who said i would just outgrow it. i always tired very easily and never had alot of energy. i currently wear an AFO on my left leg and most of my spasticity is on my left side. it's worse in the cold and at its worst, i still toe-walk, if i can walk at all. i use a wheelchair or forearm crutches at school. i also have a brace for my left hand that i wear at night to help with the spasticity. i also get alot of bladder and kidney infections. i have a g-tube and get elecare through it at 50 cc/hr durring the day and 40 cc/hr at night. i have a few foods i'm able to eat and eat them durring the day.

i've been diagnossed with:

• eosinophilic esophogitis, gastritis, enteritis, colitis and liver involvement
  
• mixed type dysautonomia
• endometriosis
• mild asthma
• scoliosis
• hyper-mobility syndrome/elhers danlos syndrome type 3
• aspergers syndrome
• borderline personality disorder
• raynauds phenominom
• "myopathy"
• cyst on my pineal gland
• astigmatism and i'm farsighted
• i've had "seizures"... they look like seizures but i've never had one durring an EEG so they are not sure if they are seizures or something else... my eyes role back into my head, i am unable to talk durring them, i shake, and one time i threw up after. i'm very tired after them and usually sleep.
  
• i've had my gallbladder removed, had surgery to put my g-tube in, had a laporoscopy for the endometriosis, and i'm waiting for surgery to have a port-a-cath placed.
• hypotonia in my trunk
  

Family history

• my dad has high blood pressure and sleep apnea
• my mom had endometriosis (had a hysterectomy and no longer has the endometriosis)
• my brother has portal hypertention
• my paternal grandfather died from lung and throat cancer
• my paternal grandmother has breathing problems (asthma and COPD i think) and is still living.
  
• my maternal grandfather died from alzheimers
• my maternal grandmother has had cancer twice (lung cancer in 1999 and lymphoma in 2008) and is still living.
  
• on my mom's side, my aunt has endometriosis and my uncle has diverticulitus. i also had a cousin who died right after he was born. i'm not sure why he died. my great aunt died from leukemia.
  
• on my dad's side my uncle has a mitochondrial disease (MERFF) and is gradually becoming deaf. my great uncle died from ALS. my great grandfather had alzheimers.

i've had the following tests:

• lots of blood tests (too many to list, always have elevated liver enzymes)
  
• MRI of my brain (showed cysts)
• MRI of my cervical spine (not sure what it showed)
• CT scan of my sinus (showed inflamation)
• endoscopies and colonoscopies (showed eosinophilic disease, active esophogitis due to reflux)
• gastric emptying scan (was normal)
• hearing tests (less hearing in my left ear than my right)
• lactose breath test (lactose intolerent)
• breath test for bacteria overgrowth (was negative)
• full neuro-psych evaluation... it lasted for weeks, probably a total of 10 hours of testing (aspergers syndrome)
• sleep study (negative for sleep apnea, showed some weird limb movements in my sleep)
• fEEG, fMRI, ink blot tests (i'm not sure what they showed, it was part of a study)
• bone density test (low bone density)
• liver biopsy (showed inflamitory cells, thought to be eosinophils)
• cat scan of my stomach (showed gallbladder disease and stones)
• kareotyping (normal)
  

is there anyone out there who has any ideas of what any of this could be?

things that have been mentioned by doctors are mild cp, a mitochondrial disease or other neuromuscular disease and a low spinal cord injury or defect.

things that have been ruled out by testing are MS, fragile X syndrome, gastroparesis and epilepsy.