What it is
Most cases happen for no known reason (sporadic CJD). A few are inherited, and very rarely it is caught through medical procedures or, in variant CJD, by eating meat from cattle with BSE.
There is no cure. Care focuses on comfort and support for the person and their family, often from palliative care teams.
Common signs
- Rapidly worsening memory loss and confusion
- Changes in personality and behaviour
- Problems with balance and coordination
- Jerky movements
- Problems with vision and speech
How it is usually diagnosed
- Assessment by a neurologist
- MRI scan
- EEG
- Lumbar puncture with special tests
- Genetic testing if inherited CJD is suspected
Records worth keeping
Keeping these together makes each appointment easier, especially when you see a new doctor:
- Neurology letters
- MRI, EEG and spinal fluid results
- Genetic test results
- Advance care plans
Questions to ask your doctor
- What type of CJD is suspected?
- What support is available for us now?
- Is there any risk to our family?
When to get help right away
Call 112 or go to the nearest emergency department if you have:
- Choking, a seizure, or breathing difficulty: call 112
This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.