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atrophy of the brain

Posted by Joan on April 17, 1999 at 09:39:45
I have two sisters who are suffering from atrophy of the brain.  They are continually getting worse day by day.  The last MRI done about a week ago showed that the brain of my one sister is currently going through the atrophy.  Three years ago it was just the front part of her brain, but know it is the entire brain.  She is having passing out spells and emotional problems as well.  We have been told that it will only get worse and eventually she will have seizures, heart attacks, and severe emotional problems.  Her cerebellum is also undergoing atrophy.  We have been told that there is nothing that can be done.  We also do not know what is going to happen next.  We are trying to check out all of our resources to see if there is anything out there that can help these two girls who are 30 and 32 years old.  The youngest of the two has been affected more physically then mentally.  Her walking is getting worse and she has shaking of the arms and hands when she tries to use them. We have been told that this is very rare. There are a total of 6 kids in our family and they are the only ones who have this problem. For years they were diagnosed as mentally retarded, but as things kept getting worse we began to question that theory.  They then underwent MRI's and the diagnoses was made.  We found this out about 3 1/2 years ago and the girls have been on a constant decline.  We understand that there is probably not a cure, but is there anything that would possibly slow the process down? Or is there anyone out there who has dealt with this?  I appreciate any help you can give us as these girls mean the world to us and we are unwilling to easily accept that there is nothing we can do.
Thank you for your time and all of your help

Posted by Kathy on April 18, 1999 at 07:16:04
30 & 32 yr. old "girls" ? Amazing !

Posted by CCF MD mdf on April 18, 1999 at 23:24:32

Atrophy of the brain is not a specific disease, as you probably know. Many degenerative disorders can lead to cerebral and cerebellar atrophy. Usually one expects to see this in much older individuals.
Just because there is some atrophy doesn't mean that symptoms will necessarily follow (again, speaking from broad experience with much older individuals). Atrophy is a statement made by a radiologist who just sees less brain and more room around the brain on a CT or MRI. There is absolutely no information about what is causing the atrophy or whether the atrophy is significant clinically.
Atrophy results from chronic long-standing pathologic processes. That is, it doesn't happen overnight. One important point to be made is that if your sisters are getting worse by the day, the atrophy is not directly responsible for it.
If the disease itself is known, the explanation may come from what is known about the "natural history" of the disease process, or there may be an acute or subacute process superimposed.
Has a diagnosis been offered? Or is it a mystery? Some of the clues you pointed out (walking worse, tremors with use of limbs) suggest cerebellum not working right - not surprising given the cerebellum atrophy reported. There are many disorders which affect the cerebellum.
This may be a diagnosable disease, and in particular it may be a genetic one, especially if two sisters are affected with identical illnesses.
I think you should have your sisters evaluated by an experienced neurologist who practices at a large tertiary referral center. Of course, Cleveland Clinic is one (suggest you request movement disorders specialist because of the ataxia). You can call 800 223-2273 andn ask for extension 4-5559 for neurology appointments to make the appointment.
If Cleveland is not practical, select a major university center in a major city near you (I still think a movement disorders specialist is a likely first choice).
I don't know how much can be done for your sisters, but a diagnosis would be a first step. It may turn out that no effective therapy exists, but you are right to do all you can searching before you buy that conclusion.
I hope this helps. CCF MD mdf.

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