Too many symptoms... too few answers

[dazedmom]

My 14-year-old daughter has been suffering from severe back pain for past several months.  Her right ankle also rolls outward when she walks.  When she tries to walk more normally, she says it makes her back hurt much worse.  Over past summer, she has occasionally experienced periods of "numbness" in her limb.. from hip down, from knee down, or (currently) just in right foot. INot tingling numbness--dead weight numbness.  In each case, she has fallen or bumped her limb, causing the numbness.  It comes back after another fall or whatever... usually accompanied by a "pop" in her low back.  But MRIs of entire spine & brain with contrast, CT scan of SI joints, and EMG/nerve conductivity studies all came back normal.   Her blood work is unremarkable, except she is HLA-B27 positive.    Only thing that seems to help is lots and lots of Aleve, but now she's started to have dizzy spells, so I've taken her off that.  Any suggestions on where to go or what to try next?

[Fionajnz]

Also not a Dr, but I do have an OT background and dealt with back pain in my teens and again in my 30's and early 40's..

I cannot suggest any disorders that may fit for your daughter, but I wonder if you have tried alternative therapies, personally I choose to stay away from chiropractic care, but some people swear by it.  I have used acupuncture for pain relief with a decent amount of success, I guess the other idea is consult not only with a rheumatologist (my consults have always been helpful with this specialty) but also consider either an osteopathic Dr and or a physiatrist (a board certified sports med and occupational medicine Dr).  

I hope you get some good answers soon.  I know how tough that can be.

Hope that helps.

Fionajnz

[dazedmom]

They really thought she had AS for a while, except that CT scan of SI joints was clear.  Also, I don't think it really explains the ankle roll.   Reiters doesn't seem to quite fit either... or else it's too early for these things to show up on testing.  I gather that's always a possibility!  But thanks for the suggestions...  if you know anything else we should have checked into re: either of these, let me know!

dm

[Lauri8967]

Hi - Im not a doc but someone with a little bit of knowledge.  Have you looked into either Reiter's or Ankylosing Spondylitis?  Both of these include the HLA_B27 marker, as well as severe back and leg pain as symptoms.  You would need to see a rheumotologist for these conditions.  It is somewhat rare for these conditions to affect someone so young, but not unheard of.
Just a suggestion if you were interested....Good luck and Ill keep your daughter in my prayers.
Lauri