UnTouchableConditions
A diagnosis can feel like it has only ever happened to you. It has not. Here is what each condition is, in plain English, and the people who have talked about living with it.
Nervous system
The brain, spinal cord and nerves, including the senses.
Brain aneurysm
A brain aneurysm is a swelling in a blood vessel in the brain. Most are small, cause nothing at all and are never noticed; some are found by chance during a scan for something else. A larger one can cause headaches, pain above or around an eye, changes to vision, numbness or weakness in the face, dizziness or problems with memory. The danger is that an aneurysm bursts. When one does it bleeds into the space around the brain — a subarachnoid haemorrhage, which is a type of stroke. The sign is a sudden, extremely painful headache that does not go away, sometimes with drooping on one side of the face, weakness or numbness down one side, slurred or confused speech, or loss of sight. The NHS says to call 999 for any of those. Smoking, high blood pressure, a family history and some inherited conditions all raise the risk of having one. An aneurysm that has not burst and is small may simply be watched with regular scans. Where treatment is needed there are two routes: endovascular surgery, where coils or a fine wire mesh are passed up through a blood vessel to block the flow into the aneurysm, or open surgery to place a small metal clip across it.
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Brain tumour
A brain tumour is a growth of cells in the brain that multiplies in an abnormal, uncontrollable way. Tumours are graded 1 to 4. Low grade — 1 and 2 — means non-cancerous: they grow slowly and rarely come back once treated. High grade — 3 and 4 — means cancerous, and more likely to return. A cancerous tumour is called primary if it started in the brain, and secondary if it spread there from somewhere else in the body; those are different situations with different treatment and outlook. Symptoms can include headaches, seizures, feeling or being sick that does not go away, drowsiness, changes in memory or personality, weakness on one side, and problems with vision or speech. See a GP if you have a headache that feels different from the ones you usually get, or if headaches are getting worse. Treatment can involve steroids to reduce swelling, surgery, radiotherapy and chemotherapy, and people with non-cancerous tumours often recover fully.
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Colloid cyst
A colloid cyst is a rare, non-cancerous growth in the brain, filled with a thick jelly-like fluid. It sits in the middle of the brain, in or near the third ventricle. Most people who have one have no symptoms at all, and many are found by accident while doctors are looking for something else. Where symptoms do appear it is usually because the cyst is blocking the flow of fluid around the brain, causing a build-up called hydrocephalus — headaches, dizziness, sickness, problems with memory or vision. They grow very slowly. A small cyst causing no trouble may simply be watched with regular scans; one that has grown or is causing symptoms may be removed, and the outlook after complete removal is very good.
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Encephalitis
Encephalitis is inflammation of the brain. It is uncommon, it is serious, and it needs hospital treatment straight away. It is usually caused by an infection — often a virus — or by the immune system mistakenly attacking the brain. It can begin like flu and go on to cause confusion, seizures, changes in personality or speech, weakness, or loss of consciousness. Some people recover fully, though recovery is often slow. Many are left with lasting effects such as memory loss, seizures, fatigue, or changes in concentration and behaviour, which affect families as well as the person themselves.
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Frontotemporal dementia
Frontotemporal dementia is an uncommon form of dementia that damages the front and sides of the brain — the parts involved in personality, behaviour, language and planning. Unlike most dementias it usually starts younger, often between 45 and 65, and it is the most common form of dementia in people under 60. Memory is often unaffected at first. What changes instead is behaviour — acting out of character, losing motivation, losing the ability to read how other people feel — or language: speaking slowly, struggling to find words or to put them in order. Later there can be problems with concentration, with movement and with swallowing, and memory can be affected too. It is caused by a build-up of abnormal proteins inside brain cells, and it sometimes runs in families. Diagnosis usually involves tests of thinking and memory, blood tests and a brain scan, and it can take a long time to reach. There is no cure and no treatment that slows it down. Care is about managing symptoms and supporting the person and the people around them, through medicines for some symptoms, speech and language therapy, physiotherapy, memory cafés and support groups. It gets worse over time, and people live on average around eight to ten years after diagnosis, though that varies a great deal.
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Motor neurone disease
Motor neurone disease is a group of conditions in which the nerves that control movement progressively stop working, causing muscle weakness over months or years. Amyotrophic lateral sclerosis — ALS, sometimes called Lou Gehrig's disease — is the most common of the four main types. Early signs can be stiff or weak hands, weak legs, or muscle twitches; as it progresses it can affect breathing, swallowing and speech. It usually affects people over 50, though adults of any age can develop it. There is currently no cure, and it is usually life-shortening. Treatment focuses on managing symptoms and on support — medicines such as riluzole, physiotherapy, help with eating, mobility and communication, and talking therapy — from a team who see you every two to three months.
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Multiple sclerosis
Multiple sclerosis affects the brain and spinal cord. Symptoms vary widely and can include extreme tiredness, problems with vision or balance, numbness or tingling, muscle stiffness or spasms, trouble with bladder control, and difficulties with thinking or memory. There are three main types: relapsing remitting, where symptoms flare and then settle; secondary progressive; and primary progressive, which worsens gradually without remission. It usually starts between 20 and 50 and is more common in women. There is currently no cure, but treatment often helps — disease-modifying therapies to reduce relapses, steroids, muscle relaxants and pain relief, alongside physiotherapy and other support.
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Parkinson's disease
Parkinson's disease is a condition in which parts of the brain are gradually damaged over many years. Nerve cells in one area of the brain are lost, which lowers levels of dopamine, a chemical involved in controlling movement. The main symptoms are shaking that a person cannot control, slower movement and stiff muscles. People may also have depression or anxiety, problems with balance, loss of smell, trouble sleeping and problems with memory. Most people develop symptoms after 50, but some do so before 40, and it is slightly more common in men. There is no cure. Treatment can include physiotherapy, occupational therapy, medicines and, for some people, brain surgery, and someone in the early stages may simply be monitored for a while. With modern treatment most people have a normal or near-normal life expectancy, though how much it affects a person varies a great deal. The NHS says to see a GP if you are worried you may have symptoms of Parkinson's disease. Source: the NHS page on Parkinson's disease.
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Postural tachycardia syndrome (PoTS)
Postural tachycardia syndrome, usually shortened to PoTS, is when your heart rate rises sharply after you stand up from sitting or lying down, and stays up. It often makes people dizzy or lightheaded. It can also cause palpitations, chest pain, breathlessness, sweating, fainting, headaches, stomach and bowel problems, changes in vision, and trouble concentrating that many people call brain fog. It is more common in people who have long COVID, chronic fatigue syndrome, or hypermobile joints. Heat, standing for a long time, dehydration, alcohol, large meals high in carbohydrate and periods can all make symptoms worse. A GP can begin by measuring your heart rate and blood pressure lying down and then standing up. Blood tests, an ECG and a referral for further heart and blood pressure monitoring may follow. There is no cure, but PoTS can be managed. The NHS describes drinking more fluid, eating smaller meals with less carbohydrate, and compression clothing, with medicines such as fludrocortisone or beta blockers for some people.
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Stiff-person syndrome
Stiff-person syndrome is a rare neurological condition in which the muscles of the torso, arms and legs become stiff, and noise, touch or emotional distress can set off painful spasms. It is thought to be autoimmune — the immune system attacking healthy cells by mistake — and it is progressive, meaning it gets worse over time. It can affect one part of the body or spread widely. Over time some people develop a hunched posture, and some become unable to walk safely because spasms and unreliable reflexes cause falls. Many become afraid to go out, because something as ordinary as a car horn can trigger a spasm. It affects about twice as many women as men, and usually begins between 20 and 60, most often in someone's thirties or forties.
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Tinnitus
Tinnitus is hearing a noise that is not coming from anywhere outside you. People describe ringing, buzzing, whooshing, humming, hissing, throbbing, and sometimes music or singing, in one ear, both ears, or the head. It is usually not a sign of anything serious, and it sometimes settles on its own. It can come alongside hearing loss, Ménière's disease, anxiety or depression, some other conditions, and some medicines. See a GP if it keeps happening, is getting worse, or is affecting your sleep, concentration or mental health — and urgently if it beats in time with your heartbeat. Support ranges from sound therapy and sleep and relaxation habits to tinnitus counselling, cognitive behavioural therapy, retraining therapy and hearing aids where there is hearing loss.
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