Just went on vacation to visit my Aunt and Uncle in DC for spring break. I knew my Aunt had not been feeling well and they told me that right now it appears she may have ALS. Final diagnosis has not yet been made so we are hoping it is something else. Unfortunately the specialist she needs to see does not have an appointment until July. They are working with another neurologist in the same practice so may be able to get in sooner.
The best hospital for ALS is Mass General, Dr. Robert Brown, Neurology Associates, 15 Parkman Street, Address 2, 55 Fruit Street, WAC 835, Boston,
MA 02114-3117, Phone: 617-726-5750, Fax: 617-726-8543.
"Dr. Robert H. Brown, Jr., a Professor of Neurology at Harvard Medical School and a neurologist at MGH, is recognized for his pioneering work on the genetics of the motor neuron disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. In 1993, Brown and his associates were the first to identify a gene that causes familial ALS cases, and which has been the basis for the development of the most widely studied animal model of ALS. Dr. Brown has subsequently investigated other genetic variants that cause ALS and strategies for ALS therapy."
He took care of my friend from Connecticut, her family had familial ALS. 3 siblings died within 3 years of each other, all in their 40s. Their mother had the disease, their grandmother, on up the family tree. The 4th sibling died this past September, in her 50s. 1 sibling out of the 5 does not carry the gene. The other side of this sad situation is all 3 of the 4 siblings have children who may carry the gene. I don't know if the children have been tested, but my friends son is suspected because of a comment Dr. Brown made to his dad when the son had to have CT Scans done after a seizure. He said "Let him live his life." Now this could mean nothing, or it could mean something.
It is VERY IMPORTANT to find out if it's genetic. Please check the
ALS Hope Foundation and the
ALS Association, learn all you can.
