The testing begins....

One year ago today my father was admitted to the Veteran's hospital to get a further examination of his ailments. Little did we know that he would be there for 1 week undergoing test after test after test. It started out that he may have Lyme's disease, then menengitis, then ....the list went on an on. He was like a freak of nature to the doctors. Something they have never seen...a mystery to be solved.

How is CJD Diagnosed?

There is currently no single diagnostic test for CJD. When a doctor suspects CJD, the first concern is to rule out treatable forms of dementia such as encephalitis (inflammation of the brain) or chronic meningitis. A neurological examination will be performed and the doctor may seek consultation with other physicians. Standard diagnostic tests will include a spinal tap to rule out more common causes of dementia and an electroencephalogram (EEG) to record the brain’s electrical pattern, which can be particularly valuable because it shows a specific type of abnormality in CJD. Computerized tomography of the brain can help rule out the possibility that the symptoms result from other problems such as stroke or a brain tumor. Magnetic resonance imaging (MRI) brain scans also can reveal characteristic patterns of brain degeneration that can help diagnose CJD.

The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy. In a brain biopsy, a neurosurgeon removes a small piece of tissue from the patient’s brain so that it can be examined by a neuropathologist. This procedure may be dangerous for the patient, and the operation does not always obtain tissue from the affected part of the brain. Because a correct diagnosis of CJD does not help the patient, a brain biopsy is discouraged unless it is needed to rule out a treatable disorder. In an autopsy, the whole brain is examined after death.

Scientists are working to develop laboratory tests for CJD. One such test, developed at NINDS, is performed on a person’s cerebrospinal fluid and detects a protein marker that indicates neuronal degeneration. This can help diagnose CJD in people who already show the clinical symptoms of the disease. This test is much easier and safer than a brain biopsy. The false positive rate is about 5 to 10 percent. Scientists are working to develop this test for use in commercial laboratories. They are also working to develop other tests for this disorder.

Obviously, more research needs to be done for CJD. It was such a draining experience for my dad to spend 1 whole week behind the cement hospital walls, not seeing the light of day. It was even more painful to be put through numerous tests with no definite result and stupified looks on the doctors faces. Worst yet, to walk out of the hospital with a terminal "your on your own" diagnosis. All the while, feeling very sick. It just tears at my heart to remember back to these days and all that my dad went through. Yet, he always remained so humble and so calm. Amazing!

Please help me to find out more about CJD. This is not for me nor my dad, it's for you, your family, your friends. One may never know.

-Lacy