My mom was just told her has idiopathic hypertrophic cranial pachymenengitis (IHCP) She was told that there were less then 200 in the world with this rare autoimmune disease of the brain. There is no cure, but steriods help the progression. The out look for this disease seems terrible. From loss of sight, hearing, paralysis, and it just goes on and on. I was hoping for someone who might have experince with this disease, or know of a great Neurologist that might specialize is rare disorders such as this. She is only 55 yrs old, and I want her to get the best treatment possible. I would appreciate anything someone might have to offer.

Thanks
Stef(