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does anyone here have Von Hippel Lindau syndrome?

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Old 09-03-2007, 02:53 PM   #1
Join Date: Aug 2007
Location: Vallejo, CA USA
Posts: 51
nerfmom HB User
does anyone here have Von Hippel Lindau syndrome?

One of my husband's diagnosis is Von Hippel Lindau syndrome. The body produces tumors in several possible areas including the brain. This was a secondary diagnosis. He was originally diagnosed with Sterge Weber. According to what I have learned, he could have either one. His seizures are caused by brain lesions. Thankfully, since he started taking Keppra along with his Dilantin, the seizures have stopped. He hasn't had ANY seizures in months. Hooray for that.

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