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Dear Colleen,
Has there been any progress in finding a reason for cerebral brain atrophy. Howard James was their in Jan. of 2015 and was seen by Dr. Matsomoto who gave him about 4 years to live. I have only connected with Liz in South Africa who has been diagnosed with this. Have there been any headway made for a reason for this or any type of a cure or an arrest of progression. He is now walking with a walker but now is beginning to fall even with walker. We are in our home in Homer, Alaska and will be here on a permanent basis.
Noreen ( wife of Howard James)
Replies to "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..."
We are hoping to get another MRI by the end of the year, so far people that have this do not have any abnormal brain MRI's. I was pretty disgusted with the Mayo last time, I tried to get my son in to see the neurologist there, because I had an outstanding balance they refused to set an appointment with the neurologist, since when is money so much more important than any human beings health, not just my son. At our hospital here in town we owe them triple of what we owe the Mayo Clinic, and they do not refuse us service.
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@hopeful33250 , Wesley was diagnosed with White-Sutton syndrome, that explains all of the developmental delays, only about 30 people have been diagnosed with this. This is not linked in anyway to the cerebellum. 2 separate issues, still need another MRI to see if there are any changes occurring.