Sorry not to get back to you sooner!
If you are looking for a doctor in the states...Dr. Eichler in Boston is wonderful. He saw my husband, David, recently. His team of docs at Mass General was phenomenal. The hospital was great; everyone was incredibly knowledgeable and kind. Brittcarrier posted Dr. Eichler's info earlier in this thread.
As far as symptoms, David never had physical symptoms. However his brother, Rick, has suffered with MS-like symptoms for 10+ years. Since David's diagnosis, Rick has been diagnosed with AMN. Rick doesn't have any brain involvement; his MRI looks great. About 3 or 4 years ago, when David was 33, he started acting different and being forgetful. He was detached and confused. I suspected drug use or mental illness for his gradual decline. When I finally convinced him to see a psychiatrist, he was misdiagnosed as bipolar. Finally, earlier this year, he was committed to a psych ward where he was diagnosed with schizophrenia. When the anti- psychotic drugs didn't work, they gave him an MRI and found severe brain damage.
If there is anything else I can help you with, please let me know. I have done a lot of research and found lots of helpful folks.
Candice Root, at the Myelin Project (http://www.myelin.org/contact/), may be able to advise you.
Best of luck,