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What if I am undiagnosed?

This article discusses why it is that sometimes a diagnosis has not yet been made and what you might want to do following this news

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.

Symptoms

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.

Please don't give up

If you feel your concerns are not being listened to or acted upon, please don't give up. The Brain & Spine Foundation Helpline nurses can help you by talking through your questions, discussing the findings of the investigations you have had and providing explanations for anything you don’t understand. Call us on 0808 808 1000 or email us at helpline@brainandspine.org.uk.

Getting a second opinion

Often, people may consider getting a second opinion. You might feel you would like to see another doctor or consultant to get a second opinion on your symptoms and tests results.  Although you don’t have a legal right to a second opinion, doctors will listen to you and when needed will refer you for a second opinion.

Some people worry about offending or upsetting their doctor by asking to be seen by another health professional. This is unlikely to happen. Health professionals also ask their colleagues about cases that are rare or complex.

If you are considering seeking a second opinion you may find the links below helpful:

You may also find our list of neuroscience centres in the UK helpful.

Internet research, other people's symptoms and self-diagnosis

Internet research into health problems can be informative, but it can also be misleading and may cause you to worry needlessly. Remember that health information on the internet – even if it is from a reputable source – is by definition general and is not a substitute for seeing a doctor. You may come across forums or chat rooms with members who seem to have had exactly the same experiences as you. Or you might speak with someone who you know about their illness and feel that yours may be the same. But remember that you are an individual and there may be important differences.

If you find something on the internet that seems to reflect your own experiences, or you feel you may have a particular condition, consult your doctor. Everyone is an individual, and a diagnosis can only be made by a consultant taking into account your medical history, symptoms, and the results of any tests or investigations.

Undiagnosed neurological conditions and mental wellbeing
Although being diagnosed with a serious condition can be hard, not receiving a definite diagnosis can be even more difficult to deal with.

Feeling anxious about being undiagnosed is understandable. Doctors may not be able to give you answers about the future, including how your symptoms will progress, which may make you feel insecure. You may also find that it is difficult to find a support group for people with undiagnosed conditions which can raise anxiety and also make you feel isolated.

Try to remember that diagnosis is not always a quick process and can often take many weeks or months to establish. Note that a period of rest time may be needed before repeating certain investigations, so you might need to wait before further tests can be done.

In some cases, a referral to a neuropsychologist and/ or a psychologist may also be helpful to you – ask your GP to refer you. You could also find an accredited therapist through the British Association for Counselling and Psychotherapy (BACP) (see Further information and support).

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Further information and support

 

The Brain Charity

Information and support on neurological conditions.

Tel: 0151 298 2999

Email: info@thebraincharity.org.uk

Web: www.thebraincharity.org.uk

 

Rare disease UK

National alliance for people with rare diseases and those who support them.

Tel: 020 7831 0883

Email: info@raredisease.org.uk

Web: www.raredisease.org.uk

 

SWAN UK (Syndromes without a name)

Support network for families with a child with an undiagnosed condition.

Tel: 020 7831 0883

Email: info@undiagnosed.org.uk

Web: www.undiagnosed.org.uk

 

British Association for Counselling and Psychotherapy (BACP)

The BACP can help you find an accredited therapist in the UK - use their Seeking a Therapist search facility online.

They also have information on finding the right therapist.

Tel: 01455 883300

Email: bacp@bacp.co.uk

Web: www.bacp.co.uk

 

National Institute of Neurological Disorders and Stroke (NINDS) (US based)

Conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas.

Web: www.ninds.nih.gov

 

Genetic Alliance UK

National alliance for anyone affected by genetic conditions.

Tel:  020 7831 0883

Email: contactus@geneticalliance.org.uk

Web: www.geneticalliance.org.uk

 

Benefit Enquiry Line

Provides advice and information for disabled people and carers on the range of benefits available.

Tel: 0800 882 200

Email: BEL-Customer-Services@dwp.gsi.gov.uk

Web: www.direct.gov.uk/disability-money

 

EURORDIS Rare Diseases Europe

An alliance of rare disease organisations from across Europe.

Email: eurordis@aurordis.org

Web: www.eurordis.org

 

Citizens Advice

Information and impartial advice on issues including money, benefit, housing and employment problems. Find your nearest Citizens Advice location online.

Tel (England): 03444 111 444

Tel (Wales): 03444 77 20 20

TextRelay: 03444 111 445

Web: www.adviceguide.org.uk

 

Turn2us

Information on accessing benefits, financial support and further sources of advice.

Web: www.turn2us.org.uk

 


 

This information was last checked in July 2017. Due for review in July 2020.

Should you wish to view the references for this publication, please contact luke.stamatis@brainandspine.org.uk