Discussions By Condition: I cannot get a diagnosis.

segmental neurofibromatosis ?????????

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • December 9, 2010
  • 02:11 PM

My 6 year old son has been going back and forth to CHOP for the past year and a half or so... he started with REAL BAD MIGRAINS!!! then we noticed light brown spots on his neck spreading down his chest and now he has a few in his armpit.
His neurologist says he does not have neurofibromatosis but at the dermatologist yesterday they say it is most def segmental NF.......

This is such a rollercoaster ride>>> i dont know whom to believe!!!!

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