Below is my brother, Ken's summary of Mom's appointment with the Vasculitis specialist. He and my sister, Alison, were able to go with Mom and Dad to the appointment. They were all felt like the doctor had done his homework and were encouraged that he was going to do even more research before just "trying" something else.
Ken's Summary
Mom’s case is very rare – less than 10,000 documented cases – due to the presence of amyloid protein deposits in the blood vessels of her brain. The deposits of amyloid protein are likely the catalyst for causing Mom’s vasculitis. Mom’s body perceived the amyloid protein deposits in the blood vessels of her brain as harmful and, therefore, began to attack the deposits which resulted in the inflammation in the blood vessels (vasculitis). Consequently, the presence of the amyloid protein complicates Mom’s treatment because simply addressing the inflammation in Mom’s brain doesn’t eliminate the circumstances that caused the autoimmune reaction of Mom’s body.
The vasculitis specialist, Dr. Waltuck, which Mom met last Monday (September 14, 2009) will be consulting with other doctors to determine the best course of action regarding Mom’s medications, treatments, therapies, etc. He stated that the initial objective will be to decrease, if not eliminate entirely, Mom’s need for Prednisone (which has serious side effects after long-term use) by using different medications to control the inflammation in Mom’s brain and to at least maintain Mom’s current stable condition. Decreasing or eliminating the Prednisone should minimize some of the side effects that Mom is currently experiencing such as fatigue, weakness, irritability, loss of appetite, and weight gain – particularly around the face.
Apparently, the report following the February biopsy of Mom’s brain revealed the presence of amyloid protein but previous doctors either overlooked it or didn’t recognize its significance to Mom’s condition.
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