MS is most often diagnosed between the ages of 20-40, the age at which many people may be thinking of starting, or extending, their family. Having MS can raise a whole host of other questions to consider before making your decision. These may include: whether MS will affect your fertility; what the risk of your children developing MS is; what effect medications taken before and during pregnancy may have; and for women, what effect the pregnancy itself may have on your MS. You may also have concerns around how you are going to cope practically and emotionally, either now or in the future, with children.
For most women, multiple sclerosis does not make any significant difference to their pregnancy. If you have MS you are no more likely to experience a miscarriage or birth defects in your baby than a woman who does not have MS. If you have relapsing remitting MS, you are less likely to have a relapse during pregnancy, although the risk of relapse does increase in the six months after the birth of your baby. This is thought to be due to changes in the levels of hormones, particularly oestrogen, during and after pregnancy.
After the period of higher risk following the birth, the number of relapses will remain around the same as it would have been if you had not been pregnant. Despite the fluctuation in the relapse rate, research has shown that pregnancy has no adverse effect on multiple sclerosis in the long-term and that it does not influence the risk of secondary progression in MS .
There is not enough data on pregnancy in women with progressive MS to give an accurate indication of its effect on this type of multiple sclerosis.
A number of medications for MS, both disease modifying treatments and those for individual symptoms, are not recommended for use by women during pregnancy or when breastfeeding. If you are planning a family, or find you are pregnant, you should discuss your medications with your MS nurse or doctor.
MS in the family - what are the risks?
The majority of people who develop MS have no previous family history of the condition. However, having a relative with MS does increase your chance of being diagnosed with MS, although the risk remains low.
In the UK, the risk for a member of the general population being diagnosed with MS in their lifetime is about 1 in 330. Although MS is not considered hereditary, people with a close relative with the condition are more likely to develop MS. First degree relatives such as the child of someone with MS are estimated to have a 1 in 48 risk of developing MS (equivalent to approximately 2%, or two out of 100 children born to people with MS). For second degree relatives (grandparents, cousins, aunts/uncles, nephews/nieces) it is around 1 in 100.
Although the higher rate of MS within families indicates that there is a genetic factor associated with developing MS, studies of identical twins show that genes are not the whole story. Identical twins have exactly the same genetic make-up, so if MS were solely dependent on genes, you would expect that if one twin developed the condition, so would the other. However, studies have shown that the actual risk of the identical twin of someone with MS developing the condition themselves is about 1 in 5.
To date more than a hundred genes have been identified that are thought to contribute to the risk of developing MS. On their own, each gene only raises the risk of developing MS by a negligible amount. However, if you have enough of these genes, their combined effect will make you more susceptible to MS.
But genes alone don’t cause the condition, in fact researchers have calculated that genes only contribute to just over half (54%) of the risk. It is believed that other external factors are involved. If you have a particular genetic make-up and are exposed to the appropriate trigger, your body can react in a way that starts the development of MS, although it may be years before any symptoms become apparent. There is much debate about what these triggers (or combinations of triggers) could be in MS, but they may include an infection of some sort, a lack of vitamin D or smoking.
A number of studies have drawn a connection between vitamin D levels in mothers during pregnancy and the subsequent risk of their children developing MS. More people with MS are born in spring than autumn, which suggests that mothers getting less sunshine in pregnancy results in lower vitamin D levels, which in some way increases the risk of developing MS later in life for children who are genetically susceptible.
Though there are many studies in progress, the exact role of vitamin D in MS is still not clearly understood. In July 2016, the Scientific Advisory Committee on Nutrition (SACN) recommended everyone over one year of age should consume 400IU (10 micrograms) of vitamin D daily, including pregnant and breastfeeding women, to ensure that the majority of the UK population has satisfactory vitamin D levels throughout the year to protect their bone and muscle health. Some MS neurologists are now recommending that pregnant women with MS take 4000-5000 IU (100-125 micrograms) vitamin D per day.
Will MS affect my chances of conceiving?
There is no evidence that MS has a direct effect on fertility, which means that if you have MS you have as good a chance of conceiving with your partner as a couple without MS.
However, some people do experience sexual difficulties as a result of their MS. Examples are erectile dysfunction in men, or a reduction in libido for women. These can impact on your sexual relationship and so on your chances of conceiving a baby. The MS Trust’s publications, Sexuality and MS: a guide for women and Sex and MS: a guide for men, explore some of the issues, and whilst it can be difficult to discuss these matters, they can be addressed and managed. All health professionals should understand that MS frequently has an impact on sexual activity. Your MS nurse or GP, are good points of contact and can work with you to find strategies to help. They can also refer you to a specialist if necessary.
However, just as in the general population, problems conceiving can occur, and one in seven couples may have difficulty. Treatments for infertility may increase MS disease activity. In depth discussion with your health care team and reproductive medicine team to explore all the pros and cons of a treatment is important.
Should I stop taking medication when trying to conceive?
No disease modifying drug is proven to be safe during pregnancy. It is generally recommended that any woman who is taking one of the injectable disease modifying drug treatments for MS (eg Avonex, Betaferon, Rebif, Extavia, or Copaxone), Tysabri, or the oral treatment Gilenya should stop taking them three months before they start trying for a baby. Women taking the oral disease modifying drug Aubagio require a two year period without taking the medication to ensure that it has all been eliminated from the body. In some cases, a neurologist may suggest that a woman remains on disease modifying drug therapy until they conceive, or even throughout their pregnancy, but this is very much a decision that should be taken in partnership having fully explored the risks and benefits.
There is little information about pregnancy outcomes if it is the father who is receiving treatment. However, as Aubagio is detected in semen, this therapy should be discontinued before trying to conceive. If you are a man taking any of the disease modifying drugs and trying for a baby you should discuss this with your MS nurse or neurologist.
Other drugs used to treat MS symptoms, such as pain or spasticity are not recommended during pregnancy. Some drugs may need to be tapered off slowly, rather than being stopped abruptly, to avoid withdrawal symptoms. Sometimes alternative medications can be explored to manage symptoms throughout pregnancy. Discussion with your MS team about the pros and cons of any symptom management during this time is really important.
What happens if I get pregnant whilst I'm taking medication?
If you become pregnant whilst taking medication it is important to contact your MS nurse or neurologist as soon as possible. You can then consider how best to stop medication as again some drugs may need to be reduced gradually to prevent unpleasant withdrawal symptoms for both mother and baby.
You may be invited to enrol in a pregnancy exposure register. This is a study that collects health information from women who take medicines when they are pregnant or breastfeeding. Information is also collected on the newborn baby. This information is then compared with women who have not taken medicine during pregnancy. Because medicines can’t be tested in pregnant women, there is little information about how they could affect a woman or her baby. Pregnancy registries are the best way to capture data, so that in the future, women and their MS teams can better balance the pros and cons of treatment during pregnancy.
Pregnancy and MS
The majority of all pregnancies are normal and low-risk, and are managed by a combination of your GP and community midwife. Having MS does not significantly increase the risk of you having problems during pregnancy. However, some maternity services may offer specialist clinics, for example for women with neurological conditions, so it is worth asking your MS nurse or midwife if this is available where you are.
Researchers analysed a large US database containing information about pregnancies and deliveries in women with MS, epilepsy or diabetes mellitus and the general healthy population. They studied: length of hospital stay; high blood pressure; premature rupture of the sac surrounding the foetus; low birth weight; and caesarean section delivery. Aside from a slightly higher risk of low birth weight babies and caesarean delivery, MS was not associated with an elevated risk for any of the other pregnancy complications.
How will pregnancy affect my symptoms?
Most women with MS feel well during their pregnancies, and experience no new problems. However, some symptoms that occur in MS also occur in pregnancy, and it may be difficult to distinguish the cause. Fatigue is often a problem in early pregnancy and MS fatigue may therefore appear to be exacerbated. Heat sensitivity may also increase during pregnancy, which may make fatigue worse. Women often find that they don’t sleep as well during pregnancy, further contributing to increased fatigue. Bladder symptoms such as frequency and urgency can increase because of pressure on the bladder from the uterus. It is also important to be vigilant about urinary tract infections. In late pregnancy, mobility problems can worsen due to the increasing weight of the baby and changes in posture.
Women’s experiences of pregnancy are highly variable and any new or worsening symptoms should be discussed with your midwife, GP or MS nurse.
Some women are concerned about the effect of pregnancy on symptoms postnatally, particularly bladder symptoms. Research showed that there was no difference in bladder problems experienced between women with MS who had had children and women with MS who had never given birth.
How will pregnancy affect relapses?
A very common question amongst women who experience relapses is whether they are likely to have a relapse during pregnancy. Overall, relapse rate has been found to be similar during the pregnancy twelve months (nine months of pregnancy and three months following the birth) as a non-pregnancy year. There is usually a reduction in relapse rate during pregnancy, particularly in the last three months but an increase in relapse rate in the three months following the birth.
One study tracked 227 women for a year before and through pregnancy and for up to two years after the baby was born. It showed that relapse rates during the early months of pregnancy are unlikely to be very different from what they were previously. However, relapses during the last trimester (months seven to nine) fell markedly. In the first three months following birth, the relapse rate increased to almost one and a half times the average rate of relapses experienced in the last pre-pregnancy year. However, 72% of women on the study did not experience a relapse in that period. The relapse rate remained at a slightly higher level than in the pre-pregnancy period for up to nine months following the birth, but then tapered off to previous levels.
It is thought that relapse rate is reduced during late pregnancy because of the effect of pregnancy hormones, notably oestrogen, which suppress the immune system to ensure that the body will carry a growing baby without rejecting it. Relapse rate after birth may increase because of hormonal disturbances, but there is no consensus about this.
Overall, taking pregnancy and the year following birth as a whole, researchers consider that the number of relapses will remain around the same as it would be if there had not been a pregnancy.
It is difficult to predict how severe any relapse that you might experience during pregnancy might be, but as far as is known relapses do not affect the baby. Do let your MS nurse or consultant know if you do have a relapse whether it is severe or not.
What impact will pregnancy have on the course of my MS?
There has been limited research into the long-term effects of childbirth on the course of MS. However, pregnancy and childbirth have been associated with less long-term disability. In one Belgian study researchers investigated the progression of disability in 330 women with MS over a period of 18 years. Participants were divided into four groups: women who had given birth before the onset of MS; women who had given birth after the onset of MS; women who had given birth both before and after the onset of MS; and women who had never had children. The time taken from onset of MS to reach point 6 on the Expanded Disability Status Scale (EDSS - a clinical scale used to measure an individual's level of disability) was used to define MS progression. Point 6 on EDSS equates with the inability to walk without the support of a walking aid.
Analysis of the data revealed that women who had given birth at any point in time - either before or after the onset of MS - were 34% less likely to have reached EDSS 6 than childless women with MS.
The study authors acknowledge the limitations of their findings, such as a lack of consideration for timing and duration of disease modifying drug therapy and the imprecision of the time of MS onset. Further studies are needed before any firm conclusions can be drawn about the effects of childbirth on MS progression.
No impact on the long-term course of MS or likelihood of transitioning to secondary progressive MS has been found. As yet no studies have explored pregnancy in primary progressive MS.
Can I take steroids whilst I'm pregnant?
Steroids carry some risks and so it is thought that these should be avoided, particularly during the first three months of pregnancy when the foetus is developing very rapidly. However, if a severe relapse occurs, it may be decided - in consultation with your neurologist - that the benefits outweigh any potential risks of treatment.
Labour and delivery
Antenatal classes are provided by the NHS for first-time mothers and many women also choose to join groups such as the National Childbirth Trust. It can also be reassuring to speak to other people with MS who are pregnant or have given birth in the past. Your MS nurse may know of suitable groups in the local area.
Many pregnant women choose to make a ‘birth plan’ outlining their wishes for the procedures to be followed at the birth of their child and where they wish the birth to take place. If you have MS this can be even more important as not all the health professionals that might see you during your labour will be familiar with MS.
You can also make a plan for pain relief, it may be useful to document whether epidural pain relief would be acceptable to you as some health professionals on the day may not have experience of MS and can be reluctant to give this. Having a meeting with your whole MS team including midwife, MS nurse and anaesthetist can be really valuable. You can be proactive and ask for what you want.
Will MS affect my labour or delivery?
MS does not usually affect labour or delivery. There is little research about whether different types of delivery are better suited for women with MS.
For most women, and for most women with MS, a vaginal delivery is suitable. However, any concerns about positions, or managing fatigue, during labour may be discussed with a midwife in advance. If you experience spasticity or spasms it is really important to discuss this with your midwife and plan for the birth, exploring possible birth positions that will be helpful, and have this documented in your birth plan. Some women find the option of a water birth helpful when heat sensitivity is part of their MS. If fatigue is a problem it may be possible to arrange an early epidural to allow you to rest in the early stages of labour - this could form part of your birth plan.
At delivery, the safety of both mother and child is paramount and there may be medical reasons for an assisted delivery - for example forceps or ventouse (suction cup) delivery - or delivery by caesarean section (C-section). Whilst in some cases women may choose to deliver by caesarean section, recovery from this procedure frequently takes longer than from a vaginal delivery, and involves restrictions on activities such as driving a car and heavy lifting.
Choices about labour should be discussed during your antenatal care. Midwives are usually very supportive of a woman’s personal choice for delivery.
What pain relief is available?
Generally, women with MS can accept most types of pain relief during labour, such as pethidine, entonox (gas and air) and epidural anaesthesia. No adverse effects on delivery or the course of MS have been associated with the use of epidural anaesthesia..
The NICE Guideline recommends that women should have the pain relief that seems most appropriate and acceptable to them, without fear of it affecting their MS.
TENS machines are available for pain relief in the early stages of labour. Anecdotal evidence suggests that TENS machines can trigger lower limb spasm in some women with MS during labour, so it may be worth discussing this with health professionals in advance if you are considering using a TENS machine.
Planning for the baby
As for anyone with a new baby, it can be valuable to make the most of any offers of help. If help is not available from friends and relatives, it may be possible to have help arranged through social services or your health visitor.
If at all possible, try discussing in advance the type of help that might be needed. For example, do you need help with household tasks? Or perhaps with night feeding? Or could someone take the baby out for a while to give you the chance to have some additional sleep in the day?
You may find you need help at different times. Typically, offers of help are received immediately following the birth, but research has shown that the increased risk of relapse remains until around six to nine months after your baby is born. One research study found that having help available for the whole of the first year reduced the number and impact of symptoms that a new mother with MS experiences and increases her ability to function normally. While this may not be feasible for everyone, developing a network of potential helpers who may be available at short notice may be useful.
Life with a new baby
Can I breastfeed?
How to feed a newborn baby is, and should be, a personal choice. You may have understandable concerns about breastfeeding. Fatigue can be a real issue for breastfeeding mothers, since only you can do it, whereas bottle feeding can be a shared activity, with other people giving some of the feeds. If you are not able, or do not want, to breastfeed then you should not feel that you have in some way failed your child.
It is good to discuss all these issues with your MS nurse and/or midwife before your baby is born, so that they are able to provide appropriate support and advice. A number of organisations also provide support to breastfeeding mothers.
MS cannot be passed through breast milk and research has shown that breastfeeding is preferable to promote the health of the newborn baby. Only one study has looked at the children of women with MS, it showed that their breastfed babies, when followed for a year, had been less prone to health problems such as ear infections than babies that had been bottle fed.
Studies on the course of MS suggest either no effect or a possible decrease in the relapse rate associated with breastfeeding.
Can I take steroids when breastfeeding?
Steroids have been shown to cross into breast milk, but there is very little research that has explored the high doses used in treating MS relapse, so currently women are advised not to breastfeed whilst taking this medication. However, women can express as much milk as possible before starting the course of treatment and store this for use during the treatment - usually five days for oral methylprednisolone or three days if taken intravenously. Milk can be expressed and discarded during the actual treatment period to ensure you maintain your milk supply. Breastfeeding can then be recommenced between one and two days after the end of treatment - your MS nurse and neurologist will determine the exact timings with you.
When can I start medications after the birth?
Disease modifying treatments can be present in breast milk so these are not usually started whilst breastfeeding. The decision whether to resume disease modifying treatment immediately after the birth or not needs to be considered against the potential advantages of breastfeeding.
Fatigue management with a new baby
Look after your own nutrition:
- prepare some meals pre-birth and freeze individual portions so you are not worrying about cooking post-birth
- have healthy snacks near to hand as breastfeeding can increase your appetite
- online grocery shopping may be an option
- don’t forget to accept help around you from family and friends, especially in the first few weeks.
If you live in a two storey property try to have a baby change mat, nappies, wipes and spare babygrows on each floor.
Sleep or rest when your baby does in the first few weeks if this is possible, again accept help around you for things like general household chores.
Find a comfortable position to hold your baby that doesn't make your arms and back ache. Have cushions or pillows nearby to support you and your baby.
Access support from the National Childbirth Trust, La Leche League and The Breastfeeding Network, they can put you in touch with skilled supporters. It may be worth getting in touch prior to the birth to discuss options.
Because of the increased risk of relapse after birth it may be worth considering expressing and storing some milk. Stored milk can also be used by other members of the family to feed your baby, so allowing mum some extra rest time or a break from the night feeds.
Electric breast pumps can conserve energy compared with using a manual breast pump. Electric breast pumps express your milk faster. Ease and efficiency are the two main reasons why many mums choose an electric breast pump.
Managing specific symptoms
Sensory disturbances in your hands - using a temperature monitor in the baby bath will be useful.
Weakness in upper limbs - consider a baby sling to hold your baby.
Once your baby is born, the community midwife’s duty of care can last for up to 21 days, but is normally less. Care is then transferred to a health visitor, who has a duty to monitor the general health and wellbeing of the whole family, not just the baby. If at all possible, it may be worth trying to meet your health visitor before the baby is born. Your GP is also responsible for monitoring both mother and baby for around six weeks after the birth.
Meeting other people
It is easy for anyone to feel isolated when caring for a very small baby. Many people find it helpful to speak to other parents in a similar situation.
A blog by Hellie, a woman with MS, charts her experiences through pregnancy and in the months after birth of her second child.
There are an increasing number of Facebook groups including muMS UK, an online group who discuss all aspects of pregnancy and parenting, and for those who are thinking of starting a family.
The MS Trust Facebook group can also be a place to find support.
Health visitors are a good source of information about local support groups for parents and babies. Your MS nurse may be able to help identify other new parents with MS. There are also several organisations that offer support and information for parents.
Sources of help and support
Home-Start UK, 2 Salisbury Road, Leicester, LE1 7QR
The UK’s leading family support charity, offers support in the home from parents supporting other parents. Based on a local network of branches and regions.
- National Childbirth Trust
Alexandra House, Oldham Terrace, Acton, London, W3 6NH
A membership organisation that provides information, publications, networks, ante- and postnatal courses and a breastfeeding support service.
BM Cry-sis, London, WC1N 3XX
A charity that offers support for families with excessively crying, sleepless and demanding babies.
- National Childbirth Trust as above.
- La Leche League Great Britain
Aims to help mothers breastfeed through mother-to-mother support, encouragement, information and education.
- Breastfeeding Network
Aims to be an independent source of support and information for breastfeeding women and those involved in their care. This has information on taking prescription drugs whilst breastfeeding.
- Disabled Parents Network
UK nationwide network of disabled parents, aiming to build up local and national networks of peer support, increase public awareness and work for improvement in services.
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Last updated: 28 March 2017
Last reviewed: 12 August 2014
This page will be reviewed within three years