[ko's mom]

I am so happy to find this forum. I am sorry to write such a long post, but I am a bit at wit's end.

My 19 year old daughter began having leg weaknees over a year and half ago. Over this time, more syptoms emerged--leg pain, followed by knee pain, then hip and lower back pain. Sometimes she can barely get up the stairs and can only walk with foot dragging and with very cramped and pigoen-toed steps. Other times her gait is nearly normal but she tires easily from walking. We saw an orthopedist three times last year, who seemed to blow off the symptoms as psychological. He ordered a lumbar MRI, which showed nothing but finally prescribed physical therapy this year. The therapist noted that her legs muscles were very tight and causing the knees to turn inward, hence the knee pain. The hip and lower back pain perhaps result from the gait abnormalities. PT did not help, although therapy with a TENS machine offered temporary relief. Orthopedist refused prescription for TENS machine.

In May she was hospitalized six days for severe pneumonia. Upon seeing the walking difficulties, a consulting neurologist was brought in. This was a teaching hospital and they kicked me out of the exam early on so they could ask about drug use. While I was there, they seemed to think her leg muscles were indeed weak and said she had "brisk" reflexes. In any event, a spinal MRI was ordered. Results came back normal so the attending physician told me a tentative conclusion of somataform disorder was made (she had two anxiety attacks in the hospital).

As there was continuing pain after her release, she went to a sports medicine doctor, who asked to review the MRI. He found that contrary to the report her alignment was not normal, as the cervical spine was quite straight and there was corresponding flattening in the lumbar (?) area. He also noticed a cyst-like formation in the thoracic area. He called the hospital's radiology area about this, and they agreed to amend the report.

I just received the addendum: "Subarachnoid septations posterior to the spinal cord from T3/T4 to T7. This likely represents arachnoid adhesions from prior inflammatory/infectious process. The nerve roots are not distorted. No evidence of active infection or inflammation." It also notes: "No mass effect on the spinal cord. No evidence of active infection or inflammation."

I have been all over the internet searching to see if these adhesions could be related to her leg weakness/pain. There is not so much, but I find a thoracic cyst could cause the symptoms and, if she has that, surgery would seem rather straightforward. In some cases adhesions and cysts seem to be used interchangeably. The stuff on adhesive arachnoidits shows a far less positive outlook. Even scarier, I consider daughter at very high risk of resorting to street drugs for relief of ongoing pain.

Questions: Could this MRI finding account for her symptoms? What follow-up if any should we do and should it be a neurologist or neurosurgeon? Given street drug risk, I'd like a follow up as soon as possible if appropriate, and I know such specialists can have long waiting lists. We could have had this all investigated at the hospital if the MRI reading had made correctly in the first place. In light of that, would it be appropriate to use this fact to make a fuss with the hospital and she be bumped in line for a further neurological consultation?

Thanks to anyone who has read this far and can make suggestions.