Practical information for men with AMN (Adrenomyeloneuropathy)

This page is for you if you are a man who has been diagnosed with AMN (Adrenomyeloneuropathy). AMN is a rare inherited disorder that affects about 1 in 25,000 people.

AMN affects men more severely than women. We have produced a separate booklet for women with AMN which you can find here. AMN belongs to the same family of disorders as ALD (adrenoleukodystrophy) – they are caused by the same gene. For reasons we don’t understand, some men with the gene get a condition called cerebral ALD (usually in childhood), while others get AMN.

In researching this information, we have spoken to many men who are living with AMN, and their families, and have put together the information they wish they had had when they were diagnosed. Of course, there is no right or wrong way of dealing with AMN, but we hope the information will be useful for you.

The medical information, has been compiled from reputable sources and checked by medical experts in AMN.

Alex - The Leukodystrophy Charity

Alex TLC is Britain’s leading charity for ALD and AMN. It is run by people who have been personally affected by the conditions, either themselves or in their families, and are here to help you. Alex TLC provides practical, emotional and financial support for all those affected by ALD and AMN. We also have a worldwide contact list of people who are willing to chat about all aspects of living with AMN and can find out more here.

What causes AMN?

AMN is caused by a genetic fault. Affected people are unable to process natural molecules called very long chain fatty acids (VLCFAs). Instead of being broken down, VLCFAs accumulate in the body and gradually destroy the sheath that covers the nerves. Made of a substance called myelin, the sheath is like the coating around an electric cable. It allows signals to travel along nerve cells. When the myelin sheath is damaged, nerves can no longer function properly.

The gene at fault in AMN is called ABCD1. For simplicity we will refer to the faulty version as the ‘ALD gene’. The gene can cause several related but different conditions. These include cerebral adrenoleukodystrophy (CALD, a severe degenerative disease that usually affects young boys), AMN, and adrenal insufficiency. it is impossible to predict how the gene will affect any one person. Because of the way the gene works males are more severely affected than females.

In AMN, the damage happens in the nerves that control the muscles. These run down your spinal cord to your arms and legs, carrying signals to and from the brain. When they are damaged or die back, signals from the brain cannot reach the muscles in the way they should. The nerves supplying the legs are the most prone to damage, which is why with AMN you usually notice problems with your legs. The nerves to the bladder, bowel and sexual organs can also be affected.

What are the symptoms?

Symptoms of AMN usually include stiffness, weakness and pain in the legs. This starts gradually and can progress over time. The medical term for this is progressive spastic paraparesis. Most people also experience problems with their feet. Damage to the nerves supplying the legs affects the ability to balance, so unsteadiness and falls are common.

The nerves to the bladder, bowel and sexual organs can also be affected, which can result in urinary, bowel and erectile problems.

For men, symptoms usually begin in their 20s, 30s or 40s. AMN is a progressive condition, so unfortunately, most people find that symptoms gradually get worse over time. For some affected men, mobility can deteriorate to the point where they need to use a wheelchair, although this does not happen to everyone.

About 20% of men with AMN eventually develop some damage to nerves in the brain, which may result in dementia-like symptoms. Some men affected in this way go on to experience severe physical and mental deterioration, similar to that seen in boys with cerebral ALD. This is potentially treatable with a stem cell transplant if it is detected early, although use of this treatment in adults is still experimental. If you would like to know more about this, talk to your consultant for the most up-to-date information.

Can AMN be treated?

There are currently no drugs that can repair nerves or stop them from dying back, although research into treatments continues. However, drugs can help alleviate some of the symptoms of AMN, such as stiffness. These drugs seem to work for some people, but not for others. Discuss with your consultant the best treatments to help relieve your symptoms. You can also speak to other people with AMN via this website or the online forum Health Unlocked.

There are lots of things you and your health team can do to help you live with AMN more easily. These are described later in this page.

What tests might I have?

Once you have been diagnosed with AMN, make sure you are checked for adrenal insufficiency as soon as possible (adrenal insufficiency is explained further down the page).

When you are diagnosed with AMN you may be offered annual MRI scans to check for cerebral ALD.  It is not always clear what changes on MRI scans mean in adults, so regular MRI scans are not recommended by all doctors. In any case, they are not something that everyone with AMN would want to have. It’s your decision whether to have the scans or not. Your consultant will be able to talk you through the pros and cons.

Adrenal insufficiency (Addison’s Disease)

The majority of males with the ALD gene will develop primary adrenal insufficiency, also known as Addison’s Disease. Adrenal insufficiency is when the adrenal glands do not produce enough of an essential hormone called cortisol. If it is going to happen, it usually develops before the legs are significantly affected. It is unusual for men with AMN to develop adrenal insufficiency once they have spastic paraparesis in the legs.

Symptoms include chronic fatigue, lethargy, muscle weakness, weight loss, and difficulty recovering from normally mild infectious illnesses. Affected people often become ‘bronzed’, i.e. progressively darker skinned, sometimes with darker than normal creases on the palms of the hands.

With adrenal insufficiency you can become extremely unwell very quickly if you get a viral or bacterial infection. A minor viral infection may result in severe vomiting which can lead to dehydration and potentially dangerous changes in blood salts. This can also happen if you get very stressed, for example by unusually heavy exercise. If untreated, adrenal insufficiency can lead to a life-threatening condition called ‘adrenal crisis’.

Adrenal insufficiency is easily treated by taking steroid tablets (hydrocortisone with or without fludrocortisone) to replace the missing hormones.

If you are diagnosed with adrenal insufficiency you should be given a kit containing an emergency hydrocortisone injection. Your partner, friend or relative will be trained to give you the injection if you are not retaining your hydrocortisone due to vomiting or diarrhoea.

It’s important that people with adrenal insufficiency are identified immediately if they come into contact with medical services. Your endocrinologist should give you a letter to show at Accident and Emergency so that you get seen immediately if you need to visit.

It’s also advisable to inform your local ambulance service, so that they are aware that you need to be prioritised if you call 999 – ask your endocrinologist or GP how this works in your area. Most ambulance services carry the correct medication. If not, they can administer your own emergency injection if it’s in its original box with the directions clearly shown.

You should also wear a medical identity bracelet or necklace saying that you have adrenal insufficiency. That way, if something happens while you are alone the medical services will be alerted to your condition and be able to treat you properly. You can buy these online – just search for ‘medical ID jewellery’.

The Addison’s Disease Self Help Group is an excellent organisation with medically checked information on managing the condition.

Lorenzo’s oil is a blend of four parts glycerol trioelate oil and one part glycerol trierucate oil. It was developed to try and correct the biochemical abnormalities in the blood that are associated with both AMN and ALD, i.e. raised levels of very long chain fatty acids (VLCFA).

Although treatment with Lorenzo’s oil, along with a special diet, does correct the blood abnormalities, it unfortunately has little effect on the disease. Clinical research has shown no evidence of benefit from Lorenzo’s oil in AMN, and it is therefore not recommended as a treatment.

You can see more about Lorenzo’s oil here.

Getting diagnosed with AMN is likely to come as a big shock. It’s natural to feel confused, upset or angry when you get news like this, and worried about what the future may hold. You may feel very low as you try to come to terms with this change in your health. It helps to talk about your feelings rather than face them in isolation. Alex TLC Support Services team also offer support in many different ways. We can put you in contact with other men who are in the same situation and this can help enormously in term of support.

This section contains information and advice on how to live as well as possible with AMN, based on the experience of men who have the condition.

Stay healthy

Try and stay as healthy as you can in every way. Try not to get overweight, as this will put added strain on your legs and impede your mobility. Try and eat a good, nutritious diet that’s high in vegetables and fruit and low in sugary, fatty and highly processed foods. That doesn’t mean denying yourself treats but do try to eat sensibly.

Exercise and flexibility

We would advise anyone with AMN to develop an exercise and stretching programme. The more you can keep your body in good condition, the better you will be able to cope with the problems AMN will cause. As well as the physical benefits, exercise gives you a psychological boost too.

Even if you have never exercised before, it’s not too late to start. Always start slowly and consult your doctor before beginning any new exercise.

  • Everyday things like taking a brisk walk most days, climbing stairs and cycling will help keep you in shape.
  • Your local gym or leisure centre should be able to advise on exercise programmes for people with mobility problems to strengthen core muscles. Water-based exercise like Aquafit or swimming can be especially effective. Sometimes your GP can refer you to these sessions.
  • Pilates is a physical fitness system that works on your core muscles. Walking awkwardly puts a lot of stress on your back. With a condition like AMN, the more you can strengthen these muscles, the better. Some people also find yoga is helpful.

It’s important to work on your flexibility. The biggest problem with AMN is often that your leg muscles become spastic, which means they are stimulated by your nervous system into behaving as if they are under tension all the time. Physiotherapists call this ‘excess tone’.

  • Stiffness in the legs is usually worst when you get up in the morning. This is because your nervous system has been stimulating your leg muscles during the night.
  • It helps to develop a stretching programme, with advice from your physiotherapist, and carry it out regularly. Yoga can also be helpful.
  • Some people with AMN recommend a type of massage bed that combines cycloidal massage and infra-red treatment to help relieve the effects of spasticity.

Balance and foot problems

AMN affects your balance, and you may have problems with falling over.

Most people with AMN have problems with their feet. One particular problem is due to spasticity the persons toes may bend awkwardly into a claw-like position. This causes loss of balance and can make the person more unstable leading to trips and falls. In addition, because the nerves to your feet are damaged you may not be fully aware of pain or heat, putting you at risk of damaging your feet.

If you have foot problems, you should be referred to an orthotics department. The orthotist can make customised inserts for your shoes to assist you. Even small things like inserts can really help.

Walking aids

  • Some people find simple aids such as a walking stick are sufficient to begin with, but you may need further help later on.
  • It can be advisable to use a stick when you first begin to experience walking difficulties, as walking awkwardly can put undue pressure on your joints. The support given by a stick can reduce this.
  • Some people with AMN use functional electrical stimulation (FES). A piece of equipment strapped to your leg gives out electrical pulses that help your foot to lift as you walk. It is now available from some NHS clinics. Ask your doctor about getting referred for assessment to see if this could be for you.
  • A new walking aid called Musmate is more useful than FES for some people.

Bladder and bowel problems

Incontinence is a problem for anyone with a neurological condition affecting the spinal cord and pelvic nerves. Unfortunately, people with AMN often suffer from bowel and urinary problems. Urinary urgency (the need to rush to the loo straight away) is common, and sometimes people do not make it in time. Constipation is very common. These symptoms tend to get worse as time goes by.

It is one of those sensitive areas that people find it difficult to talk about, but treatments are available. It is important to discuss these issues with your doctor, who can refer you to a urologist or a continence advisor if necessary.

  • Urinal sheaths can be effective if urgency is a problem. This non-invasive device allows you to urinate into a bag strapped to your leg.
  • You may need to use self-catheterisation to ensure your bladder empties properly. Care is needed to avoid urinary infections; your healthcare provider should explain the precautions you need to take.
  • Botox injections can be highly effective for an overactive bladder. They reduce the frequency and urgency of urination and reduce urinary incontinence.

For a small fee you can get a RADAR key, which lets you use accessible toilets for people with disabilities. There are over 9000 of these in the UK; they are kept locked to prevent vandalism and misuse. See here. Alex TLC can also provide you with a card explaining that you have a condition causing urgent need to use a toilet. Most shops and other premises will allow you to use their facilities upon production of the card.

Erectile problems

Erectile problems (impotence) can happen in AMN because of damage to the nerves. A lot of men worry that developing AMN will impair sexual function. However, it’s not inevitable. If you do find this is a problem, don’t suffer in silence. Several different treatments are available; ask your GP for details. GPs are used to treating erectile problems, so there is no need to be embarrassed.

If you are a male with the ALD gene, you will always pass it on to any daughters you have, but you cannot pass it to your sons. The section about genetics later on in this leaflet   explains how this works.

Females with the gene tend not to have such serious symptoms as males. However, they have a 50% chance of passing it to their sons, who may be seriously affected in childhood or as adults. They can also pass it to their daughters, who in turn could pass it to their sons. Testing of females is particularly important if they have young male children, because these boys could be at risk of cerebral ALD, a devastating and fatal condition. Knowing about the gene means the boy can have regular MRI scans. Cerebral ALD can be treated, but only if it is caught early, before obvious symptoms appear.

Young females are not at immediate risk of developing symptoms and are not normally offered testing until they reach the age of 16, when they are able to understand the implications.

Upon diagnosis you should be offered genetic counselling. The genetic counsellor will ask about your family and identify anyone who is at risk of having the gene. They can also arrange testing. The idea of genetic testing for your children can be frightening. Of course, if they are adults, they will have to make their own decisions. The genetic counsellor will talk them through the implications of testing so that they can make an informed choice. Your GP or specialist can put you in touch with a genetic counsellor if you haven’t already been referred.

Is there a way to have children who are free of the gene?

Both men and women with the ALD gene need to consider their options carefully when thinking of having children. There are fertility treatments that can ensure you have children who are free from the gene. However, these are not always funded by the NHS. We strongly recommend that you talk to a genetic counsellor about your options. Alex TLC knows several families who have had children using fertility treatments and are willing to talk about their experiences.

There is more information in our leaflet for Female Carriers, or you can look at the Guy’s and St Thomas’s hospital website at

There are a few important things to know about the ALD gene:

It affects males and females in different ways

It affects individuals in different ways

The chances of the gene being passed on to an affected person’s sons and daughters are known.

ALD is a X-linked disorder

The ALD gene sits on the X-chromosome. Women have two X-chromosomes, whereas men have an X and a Y. We inherit one of these chromosomes from each parent.

A female who inherits an X chromosome with the ALD gene also has a normal X-chromosome from her other parent. This partially compensates for the genetic fault, so females do not experience the most severe forms of ALD. Instead, they are said to be ‘carriers’. (Because the gene is so rare, it is extremely unlikely that a female would inherit it from both parents.)

Males who have the gene don’t have a normal X-chromosome to compensate, so they are at risk of being severely affected.

How ALD is passed on

The diagrams below show how the ALD gene is passed on. X-chromosomes with the ALD gene are shown in red.

 From women

When a woman with the ALD gene has a daughter, there is a 50% chance the daughter will be a carrier and a 50% chance she will be unaffected (i.e. free of the gene).

When the woman has a son, there is a 50% chance that he will have the gene and be at risk of severe effects.

Because fathers don’t pass their X-chromosome to their sons, males have usually inherited the gene from their mother.

In rare cases, instead of being inherited, the gene mutation happens while the embryo is developing. This is called a ‘de novo’ mutation.

From men

If a man with the gene has children, all of his sons will be free of the gene, because sons always get their father’s Y-chromosome, not the X.

All of his daughters will be carriers, because fathers always pass their only X-chromosome to their daughters.

ALD affects people in different ways

For reasons we don’t understand, the ALD gene affects people in different ways. Some males develop cerebral ALD as boys. Others have no symptoms in childhood, then develop AMN as adults. Some males develop adrenal failure (Addison’s disease) in addition to cerebral ALD or AMN.

About 80% of females with the gene will develop some AMN symptoms later in life. These are usually mild. In extremely rare cases women are diagnosed with adrenal insufficiency. Females do not suffer from cerebral ALD.

For reasons we don’t understand, the ALD gene affects people in different ways. Some males develop cerebral ALD as boys. Others have no symptoms in childhood, then develop AMN as adults. Some males develop adrenal failure (Addison’s disease) in addition to cerebral ALD or AMN.

About 80% of females with the gene will develop some AMN symptoms later in life. These are usually mild. Women do not get cerebral ALD or adrenal insufficiency.


If you are having mobility problems or need help with personal care, you should apply for the Personal Independence Payment (PIP), see PIP gives a monthly tax-free income, which will help with items you need to make life easier, like a car through the Motability scheme (

Adult males with adrenal insufficiency can get free prescriptions, even if they are working. According to the NHS website, Medical Exemption (MedEx) certificates are issued on application to people who have a form of hypoadrenalism (for example Addison’s disease) for which specific substitution therapy is needed. To apply, ask for an application form FP92A, available from your doctor’s surgery. You fill in parts 1 and 2, your doctor signs it, and the surgery will send in the completed form. Applications are normally processed within three working days. Certificates need to be renewed every five years. You should receive a reminder a month before it expires.

If you need to stop working because of your AMN, you can find out what you are entitled to from the government website at, or from

You can also find more on our Grant Programme Page on our website here.

You can get in touch with others in a similar situation and receive practical information, support and advice from us at Alex TLC. We also run an annual event which brings together families and individuals suffering from all aspects of living with the ALD gene to share experiences and learn about innovations in treatment and research.

Alex TLC was founded by Sara Hunt after both her sons were diagnosed with cerebral ALD. Our full time Support Services Manager provides practical, emotional and advocacy support to people and families affected by ALD and AMN. The charity also has a Grant scheme that can help with purchasing equipment that is not available through the statutory services, and can help with financial difficulties faced due to bone marrow transplant and bereavement.

Tel: 020 7701 4388



Where to find more help

These are many charities that help people in your situation. Your social worker or occupational therapist should be able to give you a list of organisations you can apply to. Also, look out in your local library or online for a publication called Grants for Individuals In Need ( This directory lists every relevant charity in the UK. Some charities require a referral from your social worker, but many will accept a letter from you setting out your case. We have listed some of the most useful organisations here.

Carers Trust

Carers Trust is the largest provider of comprehensive carer support services in the UK.

It runs a network of 144 independently managed Carers’ Centres and provides quality information, advice and support services to over 400,000 carers.

Tel: 0844 800 4361


Rights and benefits

Citizens Advice Bureau

Free information and advice on legal and money problems and can help you if you experience problems with benefits or housing. Your local branch can be found on the national website.


Government website for information about benefits and entitlements

Disability Rights UK

Provides advice and support for disabled people on a wide range of issues from claiming the right benefits to employment and independent living.

Ground Floor, CAN Mezzanine, 49-51 East Rd London N1 6AH

Tel: 020 7250 8181


Equipment and financial support

Focus on Disability

A Disabled Living Centre (DLC) is where you can get free and impartial information and advice about products and equipment for disabled or older people. At a DLC you can see and try out products and explore other solutions. Centres provide free information to people in person, by telephone, letter or email.

Disabled Living Foundation

National charity that can help you find products and suppliers of equipment for disabled people. Also has an equipment demonstration centre.

Helpline: 0300 999 0004


Family Fund

Motability Scheme

The motability charity helps provide wheelchair adapted cars, powered scooters and powered wheechairs for disabled people in the UK.

Tel: 0300 456 4566


All the medical information on this site has been checked for accuracy by Alex The Leukodystrophy Charity (Alex TLC) board of medical experts but does not replace advice given from medical professionals involved with your care. Medical opinion should always be sought. The information is for general use only and is not intended to provide personal medical advice or substitute for the advice of your physician. Medical information changes rapidly and whilst Alex The Leukodystrophy Charity (Alex TLC) make every effort to update the content of the site, some information may be out of date. Remember to always seek the opinion of a medical doctor.

There are a number of links from this website to sites maintained by third parties. These links are provided purely to assist you, and in good faith. The presence of a link does not necessarily imply that Alex TLC endorses or supports those third parties.

Alex TLC cannot be held responsible for any damage or loss caused by any inaccuracy in this site, or in linked sites/pages