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Neuromyelitis optica (NMOSD) - Living with NMOSD

 Everyone who is diagnosed with NMOSD has a different story to tell. Some things which may greatly impact on one person may not affect the next person so no two journeys are the same. Living with the effects of attacks and relapses can sometimes be challenging. Issues include fatigue, bladder and bowel problems, mobility, vision and pain. 

Relapses

What is a relapse?
A relapse, or an ‘attack’ of NMOSD, occurs when there is inflammation within the nervous system. In NMOSD, this inflammation is usually within the optic nerve and the spinal cord. The inflammation causes people to experience new symptoms, or recurrence of symptoms that they have had previously.

Why do relapses happen?
We don’t understand what causes or triggers a relapse. Relapses are usually unpredictable and there is nothing that you may have done to cause them. Occasionally, a relapse may be triggered by infection or by stress.

What symptoms do relapses cause?
In people with NMOSD, relapses usually affect either the optic nerve or the spinal cord. When relapses affect the optic nerves they cause problems with the vision. Symptoms normally come on over a period of hours or days, or people may wake up one morning with visual symptoms. Symptoms include:

  • Pain behind the eye or on movement
  • Colours appear faded or 'washed out'
  • Vision may be blurred or lost completely

Brief ‘stabbing’ pain in and around the eye lasting only a few seconds or minutes is unlikely to be caused by a relapse. Many people with NMOSD find that their vision varies from day to day, for example if they are tired.

People with NMOSD may also experience relapses affecting the spinal cord. The spinal cord controls strength and sensation in the arms, legs and trunk and is also involved in bladder and bowel control. Inflammation in the spinal cord may cause many different symptoms including:

  • Weakness in the arms and/or legs
  • Numbness or abnormal sensations in arms/legs/trunk
  • A band like sensation around the trunk, like being squeezed
  • Severe pain in the neck or between the shoulder blades
  • Problems with the bladder such as difficulty or inability to pass urine
  • Constipation or loss of control of bowel movement

Each of these symptoms may occur individually, or people may experience a combination of symptoms. Usually symptoms develop over hours or days. They are significant if they last for longer than 48 hours.

What should I do if I think I’m having a relapse?
It is important to remember that most relapses of NMOSD need to be assessed and treated promptly. Please follow the guidelines below. If you feel that there is a sustained deterioration in your vision or experience any of the symptoms described above which lasts for longer than 48 hours, please contact your NMOSD Nurse Specialist.

Your NMOSD nurse will take a history of your current symptoms, take into consideration current treatments, other illness (such as colds, infections) and how the symptoms are currently affecting you.

Following discussion with the medical team, a plan will be devised on how best to assess and treat your relapse. This may involve asking your local neurologist to see you, or if possible, ask you to come to your nearest NMOSD centre. Every patient and every relapse will have different features and the treatment will depend upon your individual needs. It is important that you are assessed quickly during a relapse, as early treatment may prevent long term damage. If you need help out of hours, please attend your local A&E or walk-in centre taking a copy of your most recent letter and our relapse leaflet with you.

Initial treatment
Once infection has been ruled out relapses are usually treated with Methylprednisolone either 500mg orally for seven days or 1gm intravenously for five days. Research has shown that both options are equally effective in treating relapses. Sometimes, particularly in the case of vision changes, we might treat with plasma exchange which is given intravenously once daily for five days.

Recovery from relapses
The time taken to recover and the amount of function recovered after a relapse can be affected by many factors and varies hugely from person to person. An important factor to always consider is that any new symptom or sustained worsening of an existing symptom (over 24hrs) should be reported to either a general practitioner or NMOSD team for further assessment. Early assessment and treatment may prevent long term damage.

Please contact either NMO Centre for further information and advice

  • The Walton Centre  0151 556 4008
  • John Radcliffe Hospital, Oxford 01865 231 905

If you have problems out of hours, contact on-call neurologist at either hospital for advice.

Pain

Pain is often caused by transverse myelitis (TM). There are four main types of pain people with TM can have:

  • Neuropathic (nerve) pain arising directly from damaged nerves in the spine, there are no particular triggers. This pain is described as burning, sharp, electrical shock, shooting or an uncomfortable numbness. Medication suggestions are Amitriptyline, Gabapentin, Pregabalin and Carbamazepine.
  • Nociceptive (musculoskeletal) pain often a more obvious cause, such as banging your knee. In NMOSD, the most common cause is pressure on joints from altered gait (the way you walk), medication suggestions such as paracetamol or ibuprofen may be helpful.
  • Increased muscle tone and spasms arises from damaged nerves in spinal cord that affects the control of muscles, including when they contract and relax. This can present as prolonged contractions of the muscles, which are called spasms. Medication suggestions are Baclofen, Tizanidine, Gabapentin.
  • Tonic spasms, a painful spasm of the muscles that lasts seconds to minutes but frequently. Often, they are controlled by Carbamazepine at low doses.

Helpful websites

  • Painsupport - is a UK group offering chronic pain support, advice and pain relief information run by Jan Sadler, who has lived with the challenges of back pain and sciatica for many years and so understands the experience of living with chronic pain. Jan was awarded an MBE in 2012 for her work with PainSupport and her services to pain management.
  • The NHS offers help and advice on pain. Find out how to get help from the NHS if you have persistent pain. ... Read some advice from Pain Support on preparing for your GP appointment.
  • The British Pain society aims to promote education, training, research and development in all fields of pain. It endeavours to increase both professional and public awareness of the prevalence of pain and the facilities that are available for its management.
  • Pain UK is an alliance of charities providing support and help for those living with pain. Pain management, healthcare advice. tips and resources available.
  • Pain concern works to improve the lives of people living with pain and those who care for them
  • Hypnotherapy Directory was launched to connect individuals with qualified professionals in the UK. We offer information about what hypnotherapy is, how it can help, upcoming events, articles written by professionals and the latest hypnotherapy news.

Relapse management

High dose steroids, Methylprednisolone, is usually given during a relapse. Steroids work by dampening the immune system and reducing inflammation around the site of nerve damage. They are given:

  • Intravenously 1g daily for 5-7 days or
  • Orally 500mg-2g daily for 5-7 days,
  • In combination of intravenous and oral, followed by a tapering course of oral steroids over several months

If steroids don’t help, what next?
When attacks progress or do not respond to corticosteroid treatment, there are two further options, Plasma Exchange or Intravenous Immunoglobulins.

Immunosuppressants
Immunosuppressants are used to dampen down the activity of the body’s immune system. Drugs such as Prednisolone, Azathioprine, Methotrexate or Mycophenolate are used to allow reduction of steroids. All these treatments increase the risk of serious infections therefore blood should be monitored for full blood count, kidney and liver function. Rituximab may be considered if first line treatment has failed ie the patient had a further relapse.

 

Living with poor vision

Visual problems are common in Neuromyelitis Optica Spectum Disorder and are mainly due to inflammation affecting the optic nerve. The optic nerve is the cable transmitting electrical signals from the light sensitive inner layer at the back of the eye (called the retina) toward the vision area of the brain.

Registering as sight impaired

If your eye specialist tells you that you can be registered as sight impaired or severely sight impaired, this does not necessarily mean you will lose all your sight; it means your eyesight has fallen below certain levels. Nine out of ten people registered as severely sight impaired have some useful sight. Being registered means your name will be held on a confidential list by your local social care services. You do not have to register if you do not want to, but registration can entitle you to a range of services including:

  • An assessment of your practical needs in the home to find out what help you might need with everyday tasks
  • Access to a resource centre to try out gadgets, provision of special equipment or home adaptations
  • Social care services have a duty to assess what help people with sight problems need.

Being certified by an Ophthalmologist as sight impaired is voluntary and may also open the door to a number of benefits and allowances: Disability Living Allowance, Carer’s Allowance, Housing Benefit and Council Tax Benefit, Disabled Person’s Railcard and Local travel schemes.

If severely sight impaired, other benefits could also include: Blind person’s personal income tax allowance, Free NHS sight test, Television licence fee halved, Blue Badge Scheme Car parking concessions, free postage on items marked Articles for the Blind, Help with telephone installation charges and line rental.

Aids and adaptations
Whether sight problems come and go, or are more permanent, there are aids and adaptations that can help. The Royal National Institute of Blind People (RNIB) is one of the best sources of information for people with sight problems. Their publications contain practical ideas and advice for people with low vision. Aids and adaptations might include:

  • Magnifying screens – they come in different sizes, some as small as a credit card. They may help with shopping and reading labels and small print. There are larger ones that are more suitable for reading books or newspapers.
  • CTVs – not to be confused with the cameras you get on the street, these are video magnifiers. You put a sheet of text under the camera (which is like a computer mouse that you use to move across the text) and they magnify it on to a TV screen or screen of their own.
  • Pocket viewer – looks like a very large-screen mobile phone and makes everything seven times larger.
  • Computer screen magnifiers or screen reader software – will convert the text and images on a computer screen into speech or Braille. Go to the AbilityNet website for more information.
  • Big Button telephones
  • Home protection – voice contact with a monitoring centre who can verify the identity of the caller if you are unable to read identification
  • Better lighting in the home
  • Audio Description (AD) – an additional television commentary that helps people with a sight problem to picture the on-screen action, body language and facial expressions. The RNIB has more information on how to get this free service.
  • The Talking Book Service provides over 15,000 audio books, with access to online reference services such as newspapers, dictionaries and reference books.

Services

  • Low vision services - For patients with visual impairment - vision not improved with spectacles or contact lenses. A Low Vision Clinic service is available to maximise use of remaining vision by making assessments and suggesting adjustments and recommending low vision aids. You do not have to be registered as visually impaired to access this service. Available at your local eye hospital.
  • Non-optical low vision aids - Conversion Systems, non-optical electronic devices include talking watches, talking calculators and speech and Braille conversion systems are available. Screen readers are programs available for audio of website page text for computer users and the RNIB can supply large letter key stickers for keyboard. Advice may be obtained from PC accessibility services to tailor the PC to your personal requirements.

Useful resources

 

Memory issues

Memory issues can be very frustrating for you and for the people around you, but there are things you can do to help with this:

  • Concentrate on one thing at a time, turn off the TV or radio if trying to concentrate on something else
  • Keep important things in a designated place
  • Keep a diary
  • Try and tell people about your difficulties
  • Work on strengths; some people are good with pictures, some good with names or numbers
  • Discuss your concerns about memory problems with doctors

www.stayingsmart.org.uk/ has further useful tips

 

Bladder issues

Sometimes, people with NMOSD can experience issues with the bladder and/or bowel. This is because two of the last nerves on the spinal cord control these functions, so if there is any inflammation or scaring in the spinal cord from relapses, then the bladder and bowel can be affected. Incontinence can have a huge impact on a person’s life. The embarrassment and stigma attached to continence has the potential to significantly change lifestyle and mood. A thorough assessment from a specialist can identify problems and strategies to manage these problems. Until there are problems, bladder control is something we all tend to take for granted. In health, we have the ability to inhibit the bladder (‘hold on’) and to activate it at will. A warning system operates between brain and bladder to alert us when the bladder needs emptying and that we should take the next convenient chance to pass urine. Or, we can empty even when the bladder is not full if that’s what we judge best – before going on a journey for example.

Urinary continence
Continence is defined as the ability to store urine in the urinary bladder and pass at an appropriate time. Therefore incontinence refers to problems with either ability to store urine or ability to pass urine. An area in the brain called the “pontine micturition centre” senses that the bladder needs emptying and relays a message down the spinal cord to the nerves supplying the bladder. This stimulates the bladder wall (which is made of muscle) to contract, at the same time the small valve at the head of the bladder is relaxed and urine is passed. Difficulty in bladder control is very common in patients who have a disease of the spinal cord, such as NMOSD. If somebody has had a “demyelinating” attack in the spinal cord above the level of the bowel and bladder, the electrical messages that would normally control continence are unlikely to get through. The nerves that control the bowel and bladder are at a similar level to the nerves that control the lower limbs. This can mean that people who have difficulties with continence can also have mobility issues, which make it increasingly difficult to respond to an “urgency” to get to the bathroom. There are two distinct types of bladder disorders in NMOSD. Some patients may experience both simultaneously which presents its own set of treatment issues, described later.

Bladder overactivity
This is a common occurrence for NMOSD patients and causes the “bladder symptoms” that can cause huge disruptions to people’s lives. Fortunately, there are many ways of managing an overactive bladder.

It is important to think of the bladder like a “balloon” of muscle, but unlike a balloon, it has the remarkable property of being able to keep the pressure inside at a constant, despite the volume of urine constantly changing. The loss of this function is due to the lack of correct messages being able to get through the spinal cord. This causes the bladder wall to have vigorous contractions despite the amount of urine being very low (a bladder with normal nerve supply has a capacity of 300-500mls compared to a damaged nerve supply being as small as 100mls).

This leads to a sensation known as “urgency” where the person feels they need to get to a toilet with all haste. If the contractions are particularly strong or prolonged and the bladder pressure becomes too high, the muscles that control the release “valve” may be forced open and the person may be incontinent.

Another common issue is “frequency” of passing urine. This is classed as needing to visit the toilet more than eight times in a 24 hour period, but may be as bad as needing to go hourly. A combination of these two symptoms can be hugely disabling. People become nervous of leaving areas where there isn’t an obvious toilet facility and have to plan all trips to coincide with regular toilet stops which can be difficult when travelling abroad.

Incomplete emptying
The inability of the bladder to be completely emptied is known as “retention” of urine. Some people will be able to feel that they are not emptying their bladder completely, others are unaware. For many, the need to void again soon after doing so is a good indicator of retention. Incomplete bladder emptying is the result of two faults in the spinal cord

  • The muscle controlling the “valve” out of the bladder (known as a sphincter) is unable to relax when the bladder contracts. This causes an interrupted flow of urine
  • The neural impulses which keep the bladder muscle contracting until it is completely empty are unable to pass the area of damage on the spinal cord. This causes weak and poorly sustained contractions of the bladder.

If your specialist suspects that you are retaining urine, they may request a bladder ultrasound for you. This is a painless technique, which involves placing a scanner over the area of the bladder after you have attempted to empty your bladder. The volume in a bladder with healthy nerve supply should be under 100mls. Therefore a scan of over 100mls may require treatment.

It is worth understanding the implication of retaining urine. The most important factor is reducing the accumulation of urine, which can build up and stagnate. The risk of a bladder infection is greatly increased with this stagnating urine. A bladder infection can subtly raise the body’s core temperature (a normal response to infection).

Treatments

Anticholinergic medication
As the bladder is effectively a bag of smooth muscle, the treatments used for over activity are based on relaxing the muscle. These are known as anticholinergic medication. Unfortunately, all of these medications have the likelihood of causing a dry mouth as the chemical messages that the body uses to cause the bladder to contract also activates the salivary gland and therefore both are reduced by the drugs action. However a dry mouth can be a good indicator that the medication is at a therapeutic level. Adjusting the medication to ensure good relief of bladder symptoms without a significantly dry mouth can take some time, but is worth pursuing.

For patients who have issues emptying, treatments are limited in terms of medication. By far the best treatment is manually emptying the bladder using intermittent self catheterisation (ISC). This term conjures up images of rubber tubes and bags hanging from the leg. The reality is that modern equipment allows for a catheter which is 10-20cm long and fits into a holder about the same size and shape of a ballpoint pen to be used. This will be discussed further in the next section.

For people who do not empty completely and also have an overactive bladder, treatment becomes more complicated. By its effective action of reducing activity of the bladder, an anticholinergic medication may compound incomplete emptying. This means it is essential to treat incomplete emptying first with ISC, followed with an anticholinergic to reduce symptoms.

It is also worth remembering that an anticholinergic medication may cause a bladder which normally empties completely to go into retention. Therefore a bladder scan three months after beginning treatment can be essential to rule this phenomena out.

Intermittent self-catheterisation
As mentioned before, many peoples’ initial reaction to being told they may need ISC is one of fear and horror, which is borne of long held understanding of “in dwelling urethral catheters” which are kept in the urethra indefinitely. However, most people are willing to try the technique once they have seen the small intermittent catheters, know the simple technique and have been reassured that the technique should be painless. Some continence advisors suggest talking to another person who uses ISC for reassurance.

For most people, ISC is fairly straightforward, however those with mobility problems or hand dexterity issues may find ISC too intricate to perform regularly. In this situation, an indwelling catheter may be the best option. Anxiety about ISC causing infections is common. Providing the correct minimal touch technique and single use of disposable catheters is observed, the risk will be reduced. If recurrent infections become a problem, it is better to use a full course of antibiotics rather than a long term course of low dose antibiotics to reduce the chance of resistance.

Botulinum toxin therapy
For those patients who find that anticholinergic medication has no positive effect on their symptoms, treatments are limited. This is usually due to the bladder being overactive; it is unable to store any useful volume of urine, leading to an uncontrollable frequency of urination, or on occasions leaking of urine. In this instance, it is viable to completely paralyse the bladder as whatever function is occurring is not useful. This can be done by injecting Botulinum Toxin directly into the muscular bladder wall and sphincter controlling the release of urine. The procedure can be done under local anaesthetic and lasts for a number of months between injections. This procedure nearly always requires the patient to learn ISC to empty the bladder.

Quick access
A RADAR key, obtained from http://www.radar.org.uk/ or 0207 250 3222, gives access to locked public toilets around the UK. An urgency flash card can be obtained from the Bladder & Bowel Foundation at Bladder & Bowel Foundation / or 01536 533255.

Incontinence Living is a great site that has all the information for people struggling with incontinence www.incontinenceliving.co.uk/incontinence-products-buying-guide/i69 

 

Bowel issues

Transverse myelitis (TM) is inflammation of the spinal cord. Any inflammation here causes swelling which presses on the nerves in the spine and disrupts the messages. The last two nerves on the spinal cord control bladder and bowel. Any swelling about this can affect the bowel, causing loss of sensation in the rectum and/or control of the anal sphincter resulting in constipation and/or incontinence.

The bowel has two major functions:

  • Digesting food and absorbing nutrients into the blood stream
  • Eliminating waste products at a convenient and appropriate time

The digestive system includes the mouth, oesophagus, stomach, small and large intestines (known as the bowel). The end of the large bowel is a section known as the rectum. This pouch is where faeces are temporarily stored prior to emptying. Sensors in the rectum send messages to the brain making you feel the urge to go to the toilet. These nerve endings are sensitive enough to distinguish between wind, solids and liquids. Bowel habits vary from
person-to-person.

Constipation
Constipation is defined as passing hard stools with excessive effort usually less than three times a week. Being constipated can cause discomfort, flatulence, bloating, tiredness, fatigue and loss of appetite. In NMOSD, the bowel movements are slow. The longer the faeces is in the large bowel, the dryer it becomes making it more difficult to pass. Sensory loss in the rectum can also contribute to constipation as the person is unaware of the need to open bowels and the faeces dries and hardens. Weakness of the anal sphincter and pelvic floor can contribute to this issue. Occasionally, the watery,  partially formed stools that build-up behind the hard stools causes diarrhoea alternating with constipation.

What can I do to help myself?
What you eat and drink has a massive impact on your bowel.

  • Eating regularly helps the bowel as it keeps it stimulated. Skipping meals has the opposite effect and makes the bowel sluggish. 
  • Ensure you drink plenty of fluids. Current guidelines recommend 6-8 glasses of water per day but juice, cordial, skimmed milk and decaffeinated tea/coffee are fine.
  • Try to establish a good routine by going to the toilet about 30 minutes after breakfast as this is when the urge to open your bowels is strongest.
  • Take regular exercise as this strengthens the muscles and contractions within the bowel. Even walking for 15 minutes a day will help.
  • Correct posture - How you sit on the toilet can affect how easily you are able to empty your bowels. The correct position for doing this is with your knees higher than you hips. You can easily do this by resting your feet on a step or small stool.
  • Make sure you get enough fibre in your diet as this helps push the contents of the bowel along.
  • Eat more fibre. There are two kinds of fibre, soluble and insoluble, both are important. Soluble is from fruit like bananas or apples, nuts, grains such as oatmeal, root veg such as carrots and potatoes and beans/pulses. Soluble fibre helps to bulk your poo and keep it soft whilst also having benefits for your heart. Insoluble fibre, found in wholemeal rice and bread also bulks and is important in moving the contents of the bowel along.

Medication
A good diet high in fibre with plenty of fluids is the key to preventing constipation. Sometimes however these are not enough and medications are required. Laxatives, often bought over the counter, should only be used as a short term solution:

  • Bulk forming laxatives - such as Fybogel work like fibre you get from your diet by increasing the bulk of the faeces, however you need to drink two litres of fluid a day for this to work well.
  • Stool softeners - such as docusate work by softening the faeces, making it easier to pass.
  • Osmotic laxatives - such as Movicol work by delivering fluid to the large bowel that cannot be absorbed by the gut. It is then absorbed by the stool making it softer. It is important that these are taken exactly as per instructions or they will not work.
  • Stimulant laxatives – such as senna cause stronger contractions in the bowel pushing the faeces along.

Continence products
There are several products available to help with bowel incontinence. Most are available on the NHS but you would need a referral from your doctor or nurse to access the continence team in your area for assessment and advice.

  • Anal plugs - these are used to help stop leakage from the anus. There are two types available: a soft expanding foam plug which swells when it comes into contact with liquid and a soft silicone design with two discs which sit either side of the anus and are connected with a thin tube of silicone and effectively seals the anus until the next time you need to open your bowel. These can be used for 12 hours or more depending on the type.
  • Anal irrigation - uses warm water to ‘flush out’ the hardened faeces which can become stuck in the large colon. This is quite useful for people who have limited or no sensation in the rectum or for those unable to push the faeces out. It can be used every other day to prevent build up.
  • Continence pads - are a commonly used method to control anal leaking and are available on the NHS. Manufacturers of these products will quite often send samples out to try.

Many are very discreet and washable varieties are available.

Other help available

  • ‘Just can’t wait’ toilet cards - These are available from the bladder and bowel foundation at a cost of £5. These can be shown to allow you to go to the front of the queue at public toilets.
  • Radar Keys - These keys unlock the 9000 disabled toilets located at public areas, restaurants, pubs and office blocks around the country. You can obtain one for approx £5 from your local authority or specialist disabled centres.

Useful links

Sexual dysfunction in women

How does NMOSD affect sexual function in women?

Female sexual function – like male sexual response – depends on good spinal cord connections and undamaged nerve pathways between the brain and the base of the spinal cord. The types of problems that can occur include: decreased vaginal lubrication; loss of libido or sex drive; loss of vaginal muscle tone; reduced or painfully heightened sensation in the vaginal and/or clitoral area; and loss of ability to achieve orgasm. Unfortunately, there are currently no specific medications available to treat these symptoms, but there are a variety of strategies that can help to minimise their impact. If you are referred to a specialist sex clinic, a sex therapist may be able to prescribe treatments that are not routinely available, depending on your particular circumstances. In November 2009, the results of a clinical trial on a drug called flibanserin were presented at a scientific conference. The reported results suggested flibanserin might benefit women with low libido. However, it has not yet been licensed for use in the UK.

How can decreased vaginal lubrication be managed?
Vaginal lubrication is the aspect of female sexual response that corresponds most closely to erection in men, and there are ways of treating decreased vaginal lubrication. Some women find water-soluble lubricants like KY-Jelly, Sensilube, Sylk or Astroglide help with lubrication. These lubricants are available over the counter and online.

How can loss of orgasmic capacity be managed?
The main complaint of women with NMOSD is loss of orgasmic capacity. There is currently no medications available to treat orgasmic loss, although research continues. In the meantime, vibrating stimulators may help as some women find they can still reach orgasm, but it takes longer, and requires more stimulation. Most women achieve orgasm through direct stimulation of the clitoris. This stimulation increases the blood supply to the clitoris causing it to enlarge and stimulate the vagina to produce lubrication. This is why women often say the most effective vibrators are those that include an externally vibratory feature.

Changes in sex drive
NMOSD can affect sexual desire (libido) and this is one of the most common sexual problems among women with NMOSD. If you don’t feel aroused it can be difficult to initiate sexual activity. But, even when people’s libido is low, the nervous system is frequently sufficiently intact for physical and emotional pleasure to be gained from sexual activity. There are various techniques available to help initiate sexual activity in such situations, including body mapping.

When considering what may have an influence on your libido, it is also important to look at factors not related to NMOSD. For example, sexual desire and activity generally fluctuate throughout life and many people report changes as they age. Other things in life, such as having children or menopause, may also have an influence. Emotional relationships can also affect sex drive. Anger or resentment in particular, whether NMOSD related or not, can affect the desire for sexual activity in both partners.

More information
The Sexual Advice Association offers sexual health factsheets on topics ranging from loss of sex drive to talking to your GP about sexual problems, and ageing and sex.

Sexual dysfunction in men

How does NMOSD affect sexual function in men?

Erections in men can occur either in response to physical stimulation of the genital area, and/or to erotic situations or thoughts. Erections in response to genital stimulation use nerves in the lower part of the spinal cord, and messages do not need to be sent from the brain to the sexual organs via the spinal cord. On the other hand, erections in response to erotic situations and thoughts do require brain processing and therefore need the nerve pathways between the brain and the bottom of the spinal cord to be undamaged. This means that, depending on where the nerve damage is, a man with NMOSD may find that he is able to get an erection in response to genital stimulation, but not in response to erotic situations, or vice versa.

Ejaculation and orgasm are much more complicated processes than genital arousal, and are almost impossible to achieve without intact connections between the spinal cord and brain. Problems can include delayed ejaculation or not being able to ejaculate at all.

If you experience sexual difficulties, do not automatically assume they are directly linked to NMOSD related nerve damage. There are various other potential causes of erectile dysfunction such as side effects of medication or an unrelated health condition. By talking to a health care professional, such as your doctor or NMOSD nurse, you can ensure the causes are accurately identified, and you receive the most appropriate treatment.

What drug treatments are there for sexual dysfunction in men?
Treating erectile dysfunction successfully can have a very positive effect on someone’s quality of life. Viagra (sildenafil citrate), Levitra (vardenafil) and Cialis (tadalafil) can all be effective for some people. All three drugs work in a similar way, but vary in how quickly they take effect and how long they remain active.

How do Viagra and other similar drugs work?
The drugs work by enhancing blood flow into the penis, and increasing any erectile response that can naturally occur – either through genital stimulation, or erotic thoughts and situations. Viagra takes between 30 minutes and two hours to take effect and lasts for up to four hours.

Levitra acts after 25 to 60 minutes and its effect lasts for four to five hours. Cialis is available as both an ‘as-needed’ tablet and as a ‘one-a-day’ tablet. The as-needed tablet acts within 30 minutes and its effect lasts more than 24 hours. The shorter response time and longer duration of Levitra and Cialis might have advantages in that less ‘planning’ is required and sexual activity can be a more spontaneous event. In the case of the Cialis ‘one-a-day’ tablet, it takes away the need for planning completely. It’s aimed at men who expect to engage in sexual activity at least twice a week.

One study looking at Viagra in men with MS experiencing erectile problems found that 95% of participants showed both improved erections and levels of sexual activity after taking the drug. Research has shown Cialis and Levitra to help in 80% of men experiencing erectile problems.

Are these drugs available on the NHS?
The National Institute for Health and Clinical Excellence (NICE) guideline, which outlines best practice for the treatment and management of MS in the NHS in England, Wales and Northern Ireland, recommends Viagra as the first line of treatment for erectile dysfunction. However, at the time the guideline was published neither Cialis nor Levitra was widely available. You should discuss with your doctor which drug might be suitable for you. Sometimes the first time you take the drug it may not work that well. It’s worth trying it a few times to see how effective it is for you and your partner. If one drug does not work for you then you may want to try one of the others.

NMOSD is also on the list of conditions for which erectile dysfunction treatments can be prescribed on the NHS. So your GP can prescribe you one of these pro-erectile treatments and you would just pay the prescription charge. With the exception of Cialis one-a-day, prescriptions will generally be limited to one dose per week, and it is normally recommended that you only take one dose in a 24-hour period.

What about buying online?
Even though there are all sorts of drugs for sale on the internet, medications for sexual dysfunction do need to be prescribed by your doctor who knows your medical history and the other medicines you take (and any possible interactions), and can discuss any potential side effects. This group of drugs may not be suitable for everyone and it’s important to discuss their use with your doctor. They are not always appropriate for men with certain conditions such as heart disease or hypotension.

What other treatments are available for sexual dysfunction in men?
Not all men find pills effective in treating erectile dysfunction. There are other treatments available, though these are generally less successful.

Penile implants
This treatment involves surgically placing devices into both sides of the penis. These implants consist of either inflatable or malleable (bendable) rods. Inflatable devices allow you to control when and how long you have an erection. The malleable rods keep your penis firm but bendable.

Vacuum devices
Vacuum devices can also be helpful. They work by fitting a plastic tube over the penis and use a hand pump to create vacuum pressure that results in blood flow into the penis. A ring is then placed around the base of the penis to maintain the erection created. The ring is removed after intercourse. Unfortunately, whilst this can help with erection, it will not bring back sensation.

Is there a treatment that helps with ejaculation?
Although the treatments described above are all potentially effective for erectile dysfunction, there is no treatment as yet that really helps with ejaculation. Being able to maintain an erection for longer can help, but ejaculation may remain a problem. Although NMOSD does not affect fertility itself, men who are unable to ejaculate will clearly have a problem if trying to father a child. If this is the case, you should ask to be referred to a fertility clinic for help.

Diet and NMOSD

Being diagnosed with NMOSD or a related condition does not mean that you need to follow a special diet or avoid certain foods. Eating a varied and well-balanced diet is the best way to make sure that you supply your body with all the nutrients it needs each day. Your nervous system works best when its cells have the right nutrition to maintain their structure and to renew and repair themselves.

A healthy balanced diet can also help to compliment your medical treatments and improve your day to day health and well-being. Living with NMOSD can mean having to deal with a range of symptoms including: low mood and fatigue, reduced mobility levels, and bladder and bowel problems. These symptoms can all potentially impact on your day to day eating habits and activity levels. In addition the side effects from medications used to treat NMOSD may also have an affect upon your day to day dietary intake and well-being.

Benefits of a healthy diet

A well balanced diet is important for helping to maintain your general health and well-being by:

  • Providing you with a balance of nutrients to help maintain your strength and energy levels
  • Helping to lower your risk of heart disease, stroke, diabetes and osteoporosis
  • Helping you to manage your weight
  • Helping you to maintain a healthy immune system and digestion

According to NHS guidelines you should:

  • Eat lots of fruit and veg 
  • Eat more fish
  • Cut down on saturated fat and sugar
  • Eat less salt
  • Get active and be a healthy weight
  • Don’t get thirsty
  • Don’t skip breakfast

RITUXIMAB (Truxima, MabThera)

What is Rituximab?
Rituximab is a drug known as a monoclonal antibody. It binds to the surface of a type of white blood cell, the B lymphocyte, which is involved in the making of antibodies by the immune system. The immune system produces antibodies and immune cells to attack viruses and bacteria. In autoimmune conditions such as Neuromyelitis Optica (NMO), there is abnormal activity of the immune system. After taking Rituximab, B cells become undetectable in the blood for several months and then slowly return to normal levels.

Rituximab can be used where relapses have occurred despite being on other drugs. It can also be used when intolerable side effects have occurred with other drugs like azathioprine, mycophenolate or methotrexate”

How long does it take to work?

Rituximab takes two to six weeks to take effect. Rituximab does not cure the condition and you may need to take it for several years to keep your relapses under control.

What dose do I take?

Rituximab is given by intravenous infusion, initially, two infusions are given two weeks apart. Subsequently, you may be given six monthly or a variable dosing regime depending on B cell production. The drug is infused in hospital over four to six hours on each visit. The cells that Rituximab affects help to fight infection. If you think you may have an infection, even a mild one such as cold, you should wait until the infection has passed before you have an infusion. If you are prescribed Rituximab it is recommended that you carry a therapy alert card, then if you become unwell, anyone treating you will know that you have had Rituximab and that your B-cell count may be low.

Can I take other medicines along with Rituximab?

Rituximab may be prescribed along with other drugs in treating your condition. Discuss any new medications with your doctor before starting them, and tell any other doctor treating you that you are taking Rituximab. Do not take over-the-counter preparations or herbal remedies without discussing this first with your doctor, nurse or pharmacist.

What are the possible side effects?

Rituximab can cause side effects. During or within the first two hours of the first infusion you may develop fever, chills and shivering. Other side effects uncommonly seen during infusion are itching of your skin, sickness, tiredness, headache, breathing difficulties, sensation of the tongue or throat swelling, itchy, runny nose, flushing, back pain and irregular heart rate. Pre-existing conditions such as heart disease may be affected and worsened. Paracetamol, anti-histamine and corticosteroid will be given prior to the infusion to reduce these effects.

Tell the person giving you the infusion immediately if you develop any of these symptoms as the infusion may need to be slowed down or stopped for a while. When these symptoms go away, or improve, the infusion can be continued. The frequency of these reactions decreases during subsequent infusions. There is a theoretical risk of increased infections after Rituximab but this is very unusual in practice.

Rituximab may rarely also cause abnormalities of your blood and affect liver function. If you have had hepatitis B there is a risk of reactivation which may cause serious liver damage.

Very rarely, patients have developed a serious brain infection, Progressive Multifocal Leukoencephalopathy (PML), caused by a virus called JC virus, which has been fatal. Tell your doctor immediately if you have memory or visual loss, trouble thinking or difficulty walking.

Despite this list of side-effects, over a million patients worldwide have received Rituximab and serious side-effects have been rare. For the great majority of patients, Rituximab is safe and well-tolerated.

If you have not had chickenpox but come into contact with someone who has chickenpox or shingles, or if you develop chickenpox or shingles, you should contact your doctor as soon as possible. This is because chickenpox and shingles can be severe in people on treatment such as Rituximab which has effects on the immune system. Therefore you may require antiviral treatment.

Vaccinations

Immunisations should be given at least two weeks before Rituximab, as Rituximab removes antibody forming cell. It is recommended that you should not be immunised with 'live' vaccines such as yellow fever. However, in certain situations a live vaccine may be necessary (for example rubella immunisation in women of childbearing age), in which case your doctor will discuss the possible risks and benefits of the immunisation with you. Pneumovax and yearly flu vaccines are safe and recommended.

Do I need any special checks while on Rituximab?

You will have a physical examination and blood tests in the seven days prior to treatment *Full blood count *urea and electrolytes *liver function test *screen for hepatitis B and C *Pregnancy test *ECG *Chest x-ray. Hepatitis screen, ECG or CXR do not need repeating before the second dose of each course unless there is new pertinent history or findings (eg cough with fever, jaundice). You will need to have monthly bloods taken whilst on Rituximab to check your full blood counts, immunoglobulins and CD markers to help us to plan when your next infusion should be given.

Alcohol

Yes, in moderate amounts. What happens if I need an operation? Let the doctor or nurse know so they can advise you. If the operation is planned Rituximab will be given at least one month before.

What if I am thinking of getting pregnant?

No one knows the risk of Rituximab to an unborn baby. Rituximab is an antibody and can cross the placenta and may affect the baby. For female patients, we would generally recommend a gap of six weeks between having Rituximab and trying for a baby. Do not breastfeed while on Rituximab. It is not yet known whether Rituximab could pass into the breast milk or the risks to the baby.

 

Carers

Partners/parents are often not asked for their opinion, yet as they are there, there is a great expectation that they will take on the caring role and look after their loved ones.

Partners / parents worry for the future especially should something happen to them what would happen to the person they are caring for? Financial aspects cause major worry as being disabled is expensive, causing lack of earnings as they are looking after somebody and unable to work or claim any benefits. This can lead to frustrations at the ‘system’ as it takes so long to organise, plan and get any action.

For parents an added concern may be the needs of the children who are well, as hospital visits and looking after the needs of the disabled child seem to take priority.

It’s not all bad news, there can be good points, as families are brought closer together to work out ways to manage the situation.

Useful websites

  • Contact a family - Provides support, advice and information for families with disabled children no matter what the condition or disability.
  • Carers UK - CarersUK is the leading campaigning, policy and information organisation for carers.
  • CarersLine is Carers UK’s free advice line for carers.
  • Crossroads Together - Crossroads Care is Britain’s leading provider of support for carers and the people they care for. They help carers make a life of their own outside caring.
  • The Princess Royal Trust for Carers - For nearly 20 years, The Princess Royal Trust for Carers has been fighting to provide carers with the support they so desperately need. The Trust understands that few of us plan to become carers, so when a caring role starts, every carer needs an expert to guide them through the maze of services, rules and entitlements. For a carer, this can make the difference between keeping and losing their job, or between staying healthy and collapsing under the stress.
  • Home Start - Helping parents build better lives for their children. They help to increase the confidence and independence of families by: Visiting families in their own homes to offer support, friendship and practical assistance, reassuring parents that their childcare problems are not unusual or unique, encouraging parents’ strengths and emotional well-being for the ultimate benefit of their children, trying to get the fun back into family life.
  • Paralysis resource centre: Caregivers

Access to Work

Employment and working

It is essential that all people have the option to work according to their ability and not disability. It is likely that you worry about getting work, or staying on at work. You may be anxious or worried about managing your work or you may have lost your self-confidence. Give yourself time to consider all the options. Below are some organisations that may be able to help.

  • Live Well-NHS Choices: Details of guidance, support and training available to help get disabled people back to work, including the New deal for Disabled People.
  • RNIB: Information on looking for work for blind and partially sighted job seekers including choosing a career, writing a CV, completing application forms, interview skills.
  • Directgov: Advice on what to do if you feel your employer has treated you unfairly. You have a disability – find out how you can qualify for extra Working Tax Credit. Employment support; financial support; education and learning; rights and obligations; motoring and transport; everyday life and leisure; disabled parents; health and support; home and housing options; travel holidays and breaks.
  • Remploy: Remploy’s mission is to transform the lives of disabled people and those experiencing complex barriers to work by providing sustainable employment opportunities.
  • Disabled workers Co-operative: Positive about disabled people. More vacancies targeted at disabled jobseekers.
  • Neurosupport Centre, Liverpool: The Working Life Service is a service run by Neurosupport to help people affected by a neurological condition or a brain injury to assist them in retaining a job, returning to work, job preparation or finding a meaningful alternative to work. The Working Life Service and NeuroLife will help to reduce or eliminate the barriers to moving forward.
  • Employment after spinal cord injury

Benefits

There are a variety of benefits for people with disabilities, care needs and for those caring for other people, such as Personal Independent Payment (PIP), Employment Support Allowance (ESA) and Carer’s Allowance. However, finding out about eligibility and getting appropriate help to make a claim is not
always a straightforward process. The benefits system is complex, and the rules often change. Before you start, it is often worth seeking expert advice from a benefits adviser or getting in touch with your local Citizens Advice Bureau. In Scotland your social work department should offer you a benefits check as part of a care needs assessment. Citizens Advice and other welfare rights services can also do checks. Find your local money advice or welfare rights service through Money Advice Scotland.

If your circumstances change, your local Citizens Advice Bureau can help check what you’re entitled to.

  • Get your entitlements checked regularly, as the rules for existing benefits are often updated and new benefits are introduced.
  • Some benefits are affected by earnings, other types of income and the amount of savings or capital you have.
  • The main changes take place on 5 April each year, so mid-April may be a good time to have an annual benefits check at a local advice agency.
  • Some benefits are affected by a claimant’s age, so check your entitlement when you/your partner/your children turn 16, 18, 60, or 65.
  • If the symptoms of your NMO get worse it is worth arranging a benefits check, particularly if any progression in your NMO looks like it will be long-term.
  • Many benefits overlap, so if you receive one there may be others that you cannot get.
  • The rules about some benefits may also vary between England,Scotland,Wales and Northern Ireland.


The MS Society publication Benefits and MS has more information, which is also relevant to NMOSD, or call the Benefit Enquiry Line on 0800 88 22 00 if you need an application form for any benefit.

See what benefits you could be entitled to online by answering questions anonymously
about your savings, income and outgoings on the Direct Gov website.

Useful websites

  • Community Legal Advice: A network of organisations in England and Wales offering advice about legal rights including information on benefits. Community Legal Advice line number – 0845 345 4345.
  • Turn2Us: Charity that helps people access the money available to them. Includes a benefits checker.
  • The Brain Charity: A charity offering practical and emotional help to those affected by a neurological condition, including help with claiming benefits.
  • Benefits and Work: Site offering information and guides to understanding and claiming benefits as well as checking your eligibility.
  • Advice Now: An independent, not-for-profit website that has information across a range of subjects, including claiming benefits.
  • Disability Rights UK: Produces the Disability Rights Handbook and is a leading authority on social security benefits for disabled people.

Staying active with NMOSD

Whatever your age or ability, there's strong scientific evidence that being physically active can help you lead a healthier and happier life. People who exercise regularly have a lower risk of developing many long-term (chronic) conditions, such as heart disease, type 2 diabetes, stroke, and some cancers. Research shows that physical activity can also boost self-esteem, mood, sleep quality and energy, as well as reducing your risk of stress, depression, dementia and Alzheimer's disease. To stay healthy or improve health, adults need to do two types of physical activity each week: aerobic and strength exercises. For example:

  • at least 150 minutes of moderate aerobic activity such as cycling or brisk walking every week and
  • strength exercises on two or more days a week that work all the major muscles (legs, hips, back, abdomen, chest, shoulders and arms)

Why should we exercise?

  • Improves posture/balance (decreased falls risk)
  • Helps to maintain ability to preform everyday tasks with ease
  • Improves muscle strength and fitness
  • Prevents joint stiffness and discomfort
  • Maintains strong bones and healthy circulation
  • Helps maintain a healthy weight
  • Increases energy

Of course, as with every chronic condition, people with NMOSD may have barriers that prevent some types of exercise so it is important to find something that you are able to do but that also offers you a bit of a challenge. Gradually build up the level of exercise as you improve. You may have limited access to participation in exercise but don't let it stop you! Swimming, walking, housework, gardening are just some of the exercises you could try and incorporate into daily life.

Useful websites

  • Sportability, is a registered charity who provides sport and challenging pursuits for people with paralysis around the UK. People with conditions such as spinal cord injury, stroke, MS and others, are able to participate in a whole range of sports – scuba diving, sailing, archery, angling, abseiling, quad-biking, gliding, canoeing, clay pigeon shooting, go karting, land-yachting, wheelchair tennis and many more.
  • The MS Trust have several resources to help you maintain fitness and cope with fatigue that are as equally important for you. Exercises for people with MS – the new version of exercises for people with MS is an expanded set of web pages with something for most people. Each exercise is clearly illustrated with an animation and can be downloaded to allow you to put together a personalised set of exercises to meet your own particular needs.
  • Spinal cord injuries 

Books and DVDs

  • Physical activity for neurological conditions by Dr Helen Dawes. Published by Oxford Brookes University (2010). A handbook to help people with neurological conditions to exercise more easily and safely. Includes advice on how to plan an exercise routine.
  • Booklet: Sitting Comfortably a self-help guide to good posture in sitting. Available free from MS Trust.
  • MS Society booklet- Exercise and Physiotherapy explains the benefits from being physically fit, to stay as healthy as possible and help to improve some of your symptoms.
  • DVD: Leanne’s chair workout by Leanne Grose. Published by Ilc Media (2007). Exercises for people who use wheelchairs.
  • DVD: Single chair yoga-volume 1 by Lakshmi Voelker (2007). Yoga for people who use wheelchairs. Available from http://www.getfitwhere/
  • DVD: Move it for MS aims to make exercise fun and engaging. It features Mr Motivator, whose infectious enthusiasm will get even reluctant exercisers joining in. The DVD is available directly from the MS Trust at a cost of £1.

Holidays

We all need a break from time to time but travelling with a neurological condition can bring added considerations:

  • If you are on immunosuppression, chose a destination that is less remote and avoid areas with high risk of infection
  • Obtain a copy of your prescription and a copy of your most recent clinic letter to take with you
  • Take your medication in your hand luggage and keep in the original boxes or bottles with your name on them
  • Make sure you obtain adequate travel insurance - you must declare pre-existing conditions or it is very unlikely that you will be covered
  • Make sure that you obtain all the vaccinations needed for where you are visiting however if you are on immunosuppressive medications such as Mycophenolate, Azathioprine etc, you must not have live vaccines such as yellow fever - if you are unsure, give us a call
  • Take more medications than you need in case of delays - especially important if you are on prednisolone
  • Drink bottled water and avoid ice in drinks
  • Wear factor 30+ sunblock
  • Avoid salads and foods on buffets

All of these are simple, sensible precaution so that you can enjoy your holiday. Make sure you have our number with you 0151 529 8357 should you need any help from us and, most importantly, have a good holiday!

Useful websites

  • Last Updated:
    11 October 2022
  • Review Date:
  • Author:
    Sam Linaker
  • Summary:

    Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare neurological condition. NMOSD affects the optic nerves and spinal cord, which can lead to optic neuritis and transverse myelitis. This leaflet provides information on living with NMOSD.

  • Related Service:
    Neuromyelitis optica

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