Are u willing to go to St. Louis?

It is for a friend of mine. She didn't mind me sharing her details. She was diagnosed with papilledema a few years ago and sent to a neuro that she did NOT care for who said "you don't have MS" and sent her home. Her pressure was NEVER checked! Just her spinal fluids. So years have gone by and we talked and she shared her symptoms with me and I shared the IHFoundation page with her and she is in shock at the parallels and really wants a second opinion/evaluation. She lives near Bloomington but would probably travel that far for an amazing, reputable doctor **IF** she was actually diagnosed with it. Right now, a diagnosis needs to be her first step...poor sweetie has lived for years with papilledema, headaches, double vision, spotty vision, anxiety, and other IH-like conditions!

She may need her original dx faxed to here, he is the best around, if she does make an appointment tell her dont see any other Dr.. other than this guy.

He is the best around, I've seen quite a few NO's and he is a great one.
http://wuphysicians.wustl.edu/physician2.aspx?PhysNum=3137

I'm in stl and need help finding a doctor for PTC. I saw this one NO, dr. Gregory van stave run. He was HORRIBLE! He said I couldn't have PTC because I'm not overweight, Nevermind the papiledema in my eyes!!
Can anyone recommend someone who can help me with diagnosis and treatment?

Reply #4 - 07/17/13 7:31pm
I'm in stl and need help finding a doctor for PTC. I saw this one NO, dr. Gregory van stave run. He was HORRIBLE! He said I couldn't have PTC because I'm not overweight, Nevermind the papiledema in my eyes!!
Can anyone recommend someone who can help me with diagnosis and treatment?

Dr Jay out of Loyola, diagnosed me immediately, and then had me in surgery in 2 days (in 2001). I did fairly well until a couple years ago. Shunt has been replaced and asside from minor annoyances I'm doing ok. He does, however, have a terrible bedside mannor, but he's very good at what he does and I keep going back. Apparently I was days away from loosing site in my left eye at diagnosis. He tracked me down after I saw the reg. eye Dr. I wasn't even going to go to that appt. to see him. He apparently knew what was happening just from hearing about me.

Hey there sorry it took awhile I haven't been on here for a couple of months.... I lib in Bloomington and of cords haven't found a good Dr here but can tell ur friend which ones to stay away from. I see Patricia McNussen in Champaign at the Carle hospital, she's really good and thorough the only problem is it might take awhile to get on to see her. She's an optho/neuro that actually specializes in ptc. Let me know it I can help out anymore.
Best wishes,
Toya