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Neurology (Expert Forum)
Organic Brain Syndrome
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Organic Brain Syndrome
by Judy__0__0, Sep 29, 1998 12:00AM
Thank you for your response to my earlier message. Yes, I am interested both in genetic testing for children as well as any treatment which might slow or stop the progression of the disease.
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I read the prior post of 9-21, though it took some time to find it. I hope I have all the information. The term "organic brain syndrome" is vague and we use it if we're not sure just exactly what is happening. Clearly, it sounds like your mom has trouble with coordination which may be ataxia.
There are hundreds of disorders which produce ataxia, so that in and of itself doesn't help with the diagnosis. The other symptoms and signs accompanying ataxia provide clues. You mentioned other affected family members, which makes it probable that your mom (and other family members) have an inherited ataxic disorder. That narrows down the number of possibilities, but it is still large.
Before embarking on genetic tests, it is important to be evaluated by a movement disorders specialist who is experienced with ataxia. The appropriate questions can be asked, and the neurologic exam can uncover clues. When the clinical picture is put together, a "short list" of diseases can be made. At THAT point, it may be appropriate to select genetic testing.
To give you an example, I once saw someone who was supposed to have had Friedreich's ataxia, which is a hereditary disorder affecting the cerebellum. Careful questioning revealed that what he had didn't fit that diagnosis. Testing for Friedreich's gene would have been pointless. (He did undergo a test for a different genetic ataxic disorder, which turned out to be positive).
You are welcome to call 800 223-2273 and ask for neurology appointments at 4-5559. Tell them your mom has ataxia, so they'll set you up with a movement disorders specialist (ask for this). If travel to Cleveland is impractical, seek consultation with an academic medical center closer to you (usually attached to a medical school).
I hope this helps. CCF MD mdf.
PS: you are welcome to post further questions related to this topic. If you do, it makes it easier for us if you use the "post a follow-up" method rather than a fresh post. That way, everyone can see all the related material together. Of course, a different topic deserves its own posting.
