It is not always possible for patients who are experiencing neurological symptoms to get a diagnosis. Some people may have to wait a long time before the cause of their symptoms is identified, while others may not be able to get a diagnosis.
A diagnosis is the result of understanding the root cause of a person’s illness, based on the physical examination and symptoms, results of their tests and investigations and health and family history. The prognosis of a condition (how symptoms will progress as time goes on) as well as treatment options often follow a diagnosis.
There are people who are not yet diagnosed because they are waiting for tests, for a referral to a specialist consultant or their symptoms do not point to a clear diagnosis (either because they are similar for many conditions or they are uncommon).
Undiagnosed generally refers to patients who have undergone tests and neurological examinations, but doctors haven’t been able to find the cause of their symptoms. The term ‘syndrome without a name’ (SWAN) is sometimes used to talk about an undiagnosed condition.
You may find it useful to read our article on diagnosis. It explains the process of getting a diagnosis and why neurological conditions are sometimes difficult to diagnose.
It is important to note that medically unexplained neurological symptoms or functional neurological disorders (FND) are separate from undiagnosed conditions. FND is a diagnosis given to patients who are experiencing real symptoms which have no apparent physical problem causing them. Approximately one-sixth of all patients seen by the neurology service will be diagnosed with FND.
People who are not yet diagnosed, or who have an undiagnosed condition, often experience neurological symptoms which are changeable or do not match the symptoms for any condition that doctors recognise.
It is important to listen to your body and to keep a diary of your symptoms so you can communicate them clearly to your consultant. You may find it helps to write down any new and persistent symptoms, what triggers them and when they usually occur. You may also find our articles on living with a neurological condition helpful.
What if I don't get a diagnosis?
It is possible that you may not be able to be formally diagnosed, and the cause of your symptoms may remain unknown.
While this can be worrying or unsettling, you may still be able to take advantage of the treatments and benefits available to patients who do have a diagnosis.
It may be possible for treatment to help you manage your symptoms, even though the underlying cause of your illness is unknown. How best to manage your symptoms will depend on your own individual circumstances.
If you or someone you know is interested in enrolling in a clinical trial, you can find helpful general information on clinical trials here. For further information on clinical trials, you may also wish to see our fact sheet on the subject.
You may also be able to claim benefits. See the Citizens Advice website to find out what you might be entitled to.