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It is important to remember that the diagnosis of CJD cannot be established by the features of the illness, or by any single laboratory test. It is the total picture that counts (including the way in which the illness progresses), and in a very few cases, CJD may even be impossible to diagnose with confidence during the patient’s lifetime.
One of the reasons CJD is difficult to diagnosis is because the symptoms mimic other diseases. Below is a table that illustrates the commonality among various diseases:
Diagnosis may or may not involve the following:
Diagnostic tests for ‘treatable’ diseases are negative
“Typical” symptoms at the onset of illness
The rapidity in which the disease progresses
Family History of similar neurological disease
Positive blood test for a CJD mutation *
Positive results of identified tests (Spinal fluid test for 14-3-3 prion protein or tau protein, MRI, EEG etc)
Positive Brain Biopsy – this can be a dangerous procedure and is only advisable when an alternative treatable disease is suspected
Diagnostic post-mortem examination
NOTE: All TREATABLE illnesses must be ruled out in patients suspected of having CJD. All possibilities must be investigated before the ‘label’ of CJD is given to a patient. In other words, like other diseases for which there is no treatment or cure, CJD should be a diagnosis of exclusion.
Death is around us all the time yet we feel that it will never happen to us. We bury our friends and relatives but think we will live forever. In a way we recognize it and even plan for it with life insurance policies, estate planning etc. In addressing these topics, we seem to feel that it is a recognition of death and an end point to this life. Where we fail is in recognizing it as the beginning of another life that will never end and where we will reap what we sow here.
The following are other plans that one should consider making in preparation for the ending of our physical life. It is not necessary to wait until death is upon you to complete these plans in fact; it is best to address these topics early.