Looking for a neurologist

[missmath37]

Hello. My husband was diagnosed with AMN 10 years ago when he was 30. He was in the Lorenzo's Oil study at Kennedy Krieger until it was cancelled about 6 years ago. We live in NJ and are looking for a neurologist in the NYC, NJ/Phili area that is familiar with AMN as most doctors we have used don't know much more than we do. If anyone has a recommendation, please let us know. Thank you so much.

[julie_]

Hi, I am in NYC. There was a neurologist at NYU Medical but she moved to Paterson, NJ so that, presumably, she can be closer to her family. Dr Swati Sathe is now at St Joseph's Hospital. I met her once about 2 years ago shortly after the Sandy Storm. She is knowledgeable and has ALD/AMN patients, so she can treat you. For me, the distance is too great, so I have not seen her since she moved. My current neurologist is Dr Russell Chin at Weill-Cornell. He gave me and my brother our diagnosis but he does not treat us.

I went to Kennedy Krieger last December and I may go again this year. Not certain.

If you would like a recommendation for a physical therapist in NYC, please let me know!

I am also curious if anyone else has info.

Take care,

Julie

[missmath37 in reply to julie_]

Thank you so much!

[julie_ in reply to missmath37]

You're welcome! I would love to hear about your experience!

[dryder]

We live in upstate NY and travel to Mass General in Boston to see Dr. Eichler. He is wonderful and leading the way on research here in the U.S.

Worth the trip..