13 year old needs help

[mdhatton]

My son is 13 years old.Sep. 07 he started having severe spastic left lef then in Oct. it was both. Walking started to be difficult. Tried several meds nothing works. Chronic pain. When his bottom of foot is touched Left leg clonus is bad.
Jan.08 he went homebound because he could no longer walk in halls at school. He has trouble standing to use restroom or shower. Falls got worse. He hit his head in march and the next day he started passing out and seizures.  He had 2 spinal taps and a bloodpatch. Spinal pressure was 23. 2 MRIs showed a spot (syrnx on Thorasic but after bloodpatch and spinal taps  #rd MRI did not show the deviation in spine. headaches went away but leg pains are worse. Sharp stabbing pains in left leg and now headaches in the back of head are coming back. Left arm has some weakness. He gets tingling and numbness some in left leg and left arm.  His mobility in left leg is 10 and right leg 30 pt said. We have been to 3 hospitals,10 neurologists no one can figure it out with all the tests comes up normal. Any Ideas?. I will appreciate any ideas.

[mdhatton]

Thank you for your response. I will talk to his neurologist today. This morning we will go to visual field testing to try to rule out psuedo tumor. Also will find out about md test results that should be in. When you said this I looked up what you said. One of the concerns is my sons calves are huge. Your response had me look hopefully in the right direction.The md test was just some type of blood work but maybe needs to go further. I found the one md called Beckers MD.  Atleast I can get the Doctors to look .Anything else you think of will be appreciated. Hopefully by getting fresh thoughts we can find what is causing his pain. THANK YOU

[PaulMD]

Hi there.

I'm sorry to hear what your son is going through.  From what you have described, it seems that he's really suffering from a condition that is uncommon and hard to diagnose even for the best neurologist.  Some other conditions that I could think of would include a primary myopathy or a muscular dystrophy.  A biopsy of the muscle and nerves would probably help in the diagnosis.  I would also suggest that you discuss with his doctors regarding holding a multidisciplinary conference in the hospital, where they discuss the difficult elusive cases.  This way, more doctors can think at the same time and hopefully come up with an answer.

I hope all of you can get to the bottom of this soon.  Regards.