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MS and men

Posted on: June 14 2019

Men are less likely to live alone, or have additional health problems.png

Men experience MS differently to women. Here we take a look at those differences

Most of the information available about multiple sclerosis (MS) makes a point of telling us that more women than men are affected by the condition. Statistics claim that MS is at least two to three times more common in women than in men and more recent studies have suggested that the female to male ratio may be as high as 4:1, as the number of women diagnosed with MS increases. But how does the predominantly female related condition affect men?

Ageing with MS

Let’s start by looking at how men with MS age. In a Canadian study of 743 men and women, both sexes were found to have similar average age, years of education, years since MS diagnosis and level of disability. The study said that men were less likely to live alone or have additional health problems, however, older men with MS had a lower perception of their health. They didn’t cope as well with setbacks, rated lower in the participation of household activities such as housework, they were less likely to socialise outside of the home and they also had a poorer diet. Researchers suggested men’s struggle to cope as they grow older with MS could be due to the loss of work. Work brings routine and a reason to socialise with other people on a daily basis. The ratio of male to female respondents for this study was 166:577 respectively, the fact that so few men responded confirms the findings of this study but also isn’t necessarily a fair representation because there were so few responses from men.  

Mental health

MS can affect mental health in a number of ways. Struggling to deal with the diagnosis, and changes in condition or symptoms can all have an impact. A survey commissioned by the Mental Health Foundation and published back in 2016 found that not only are men far less likely than women to seek professional support, they are also less likely to disclose a mental health problem to friends and family.

In a study that looked at how depression, high blood pressure and other chronic conditions may be common at MS diagnosis, men with MS had disproportionately higher levels of depression and anxiety than women with MS.

However, research shows that men are less likely to disclose or seek help with mental health issues. For MSers the first port of call should be their MS nurse. They are experienced in dealing with all MS related issues and can make referrals to get the help and support needed.

Fertility and sex

Though men with MS might experience physical difficulties surrounding sex, studies have shown that the count and quality of sperm are not affected, which means MS will not have a negative impact on an unborn child. However, sexual problems, such as the inability to sustain an erection or delayed ejaculation can have a significant impact on a sexual relationship and the ability to start a family. But fear not, there are some solutions. The biggest barrier is talking about it. Don’t be shy about discussing it with your GP or MS nurse, they understand the importance of the matter and will be able to recommend treatment options. There are a few drugs that can help with erection problems for example.

MS Clinical Nurse Practitioner Miranda Olding says: “Men with MS qualify for the medications Viagra, Cialis, Levitra and Spedra on the NHS, and if they are not suitable, ask to be referred to the local erectile dysfunction clinic, where different options like implants, creams, injections and vacuum pumps can be discussed. Pumps can also be bought privately and work well for many men.”

There are currently no drugs to help with ejaculation issues, “the NHS Choices website mentions that Baclofen can cause delayed ejaculation and that amantadine, bupropion and yohimbine are suggested when this problem is caused by selective serotonin reuptake inhibitors (SSRIs),” explains Miranda. “Pseudoephedrine has also shown promise but hasn't been licensed for this use. Interestingly, amantadine is also used for fatigue in MS.”

A lot can also be said for taking the pressure off, relaxing and just having a good time. Try not to focus on what can’t be done and focus more on what can, especially for your partner.

Testosterone

Men have around 10 times more testosterone in their blood than women. It is a hormone which affects sexual development. Both males and females produce the hormone, but those levels fluctuate throughout life. Before puberty testosterone levels in males are low and they start to increase during puberty, levels peak at around the age of 40 and then slowly start to decrease as they age. This is also a similar age that many men are diagnosed with MS, which may or may not be a coincidence. More research is needed to conclude these findings, but one small study of 10 men with relapsing remitting MS, who applied 100mg testosterone gel to the tops of their arms, once a day, for 12 months showed an improvement in cognitive performance and slowing brain atrophy. However, this didn’t change the number or quality of lesions on MRI.

Progressive MS in Men

Studies have shown that when it comes to primary progressive multiple sclerosis (PPMS) the ratio of men to women evens up. In the largest study of hundreds of men and women with PPMS, which spanned decades, researchers found that equal numbers of men and women had the condition under the age of 30. Fewer men than women were diagnosed with PPMS over the age of 50, but usually, symptoms were worse in men than women. However, other studies have shown that symptoms were just as severe and got worse just as fast for men as for women.

More investigation into how men and women are affected by MS is needed in order to personalise both treatment and MS management.

This extract was taken from issue 110 of New Pathways magazine, your MS magazine of choice. To subscribe click here.

Bank holiday closing times

Posted on: May 20 2019

Hi everyone,

MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:

Friday 24 May - open from 9am - 5pm

Monday 27 May - closed

This includes the MS-UK Helpline. If you would like to leave a message for our helpline team over the weekend, please email us, and we will respond when we get back on Tuesday.

Thank you all and do have a lovely bank holiday!

Best wishes, The MS-UK team

MS and guilt

Posted on: May 15 2019

Annabel Nicklin.jpgMS-UK counsellor Annabel Nicklin discusses how MS can cause feelings of guilt

This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.

We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!

People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.

People living with MS may experience this feeling for a number of reasons, some of which are discussed below

  • Letting their family, friends and colleagues down by being diagnosed with MS
  • Their MS has put additional burdens on their family life; for example through a change of lifestyle or reduced household income
  • Needing to reduce work hours, socialising, attendance at special occasions and hobbies
  • A need to now rely on others in a way they didn’t before
  • Feel personally responsible for developing MS because they didn’t exercise enough, eat healthily enough or go to their GP early enough. Or wish they had fought harder to be heard by health professionals
  • Being punished for something they feel they did wrong towards somebody else
  • Family members may also experience guilt as they may not feel they’re ‘caring enough’ or that they don’t have enough patience or compassion towards the person living with MS. Or they may blame the person for the challenges presented which can provoke guilt in the person living with MS

Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.

If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:

Counselling or Cognitive Behavioural Therapy (CBT)

This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel. 

Relationship or family therapy

The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.

Mindfulness and meditation

Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.

You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.

This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.

Sub button for news stories - NP.jpg

Guest blog: 'I feel extremely lucky and proud to be able to run the London Marathon for my aunt...'

Posted on: April 23 2019

Image of Kate, MS-UK runner, with quoteThis Sunday Kate Mitchell will be taking on the Virgin Money London Marathon - that's 26.2 miles of running - and every step of the way she'll be inspired by her Aunt, Karen. Read why she's taking on this challenge in this guest blog...

'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.

'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.

Image of raffle prize'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!

'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!

'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'

Visit Kate's JustGiving fundraising page

MS Awareness Week 2019 is nearly here...

Posted on: April 15 2019

Hello,Cover image of MS-UK Choices Exercise booklet

Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.

We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise. 

We hope you enjoy the booklet and don't forget to get involved next week on social media using the hashtag #MSAW2019.

Best wishes,

The MS-UK Helpline team

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Guest blog: Gogglebox’s Scott talks trains, tests and tablets...

Posted on: April 15 2019

In this guest blog Scott McCormick talks about his journey for blood tests in London, and how we really wishes he’d stopped at a chemist...Photo of Scott on way home after blood test on the train

Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up. 

I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.

As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way). 

Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it. 

Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.

Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.

Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.

From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet? 

My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet. 

I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff. 

Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.

I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.

Want more information about multiple sclerosis (MS) or HSCT?

Our helpline is here to listen and offer you all the information and support you need to make your own decisions. Call us free on 0800 783 0518, email info@ms-uk.org, or live web chat with us today.

 

Your MS magazine of choice hot off the press!

Posted on: April 03 2019

Issue 114 front cover_1.jpgIssue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.

Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.

Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.

MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.

Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.

In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!

Enjoy reading!

About New Pathways

New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.

To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.

Planning for a healthier and happier future...

Posted on: March 21 2019

Hi everyone,

Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.

Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.

We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.

So, what are our priorities for the next three years? Watch or listen to our film today to find out!

You can also read our Strategic Plan for more information. 

I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,

Best wishes,

Amy

CEO

Gogglebox’s Scott McCormick accepted for HSCT treatment in London

Posted on: March 06 2019

You may recognise Scott’s face, he is in fact the dad to the McCormick family on Channel 4’s popular series Gogglebox...

What you might not know is that Scott has been living with multiple sclerosis (MS) for 13 years and after recently seeing a worsening in his condition applied and has been accepted for Haematopoietic stem cell transplantation (HSCT) treatment in London.

Scott has had a coveted career as an aircraft engineer in the Royal Air Force and was diagnosed with MS in 2006. With an MRI scan his neurologist identified that he has significant lesions to confirm he has MS.

He tried the disease modifying therapies approach and gave beta interferons a try, but they didn’t agree with him. So he decided to take the no-drug route for 13 years before his MS became more active in recent years.

Like many people’s HSCT stories, Scott didn’t know anything about the treatment until his wife found information online. He has since been accepted for HSCT treatment in London and wants to raise awareness and share his experience exclusively with MS-UK and its followers. This is the first of a number of vlogs Scott will be sharing with us, so please do follow his journey with us.

Scott thought it was important to express that he is no way an expert and MS affects everyone differently, but hopes that sharing his story will give everyone an idea of what’s involved in the process and what to expect. Please do share your thoughts and comments with Scott via our social media pages and his own @goggle_beard.

Want more information about HSCT?

Our helpline is here to listen and offer you all the information and support you need to make your own decisions. Call us free on 0800 783 0518, email info@ms-uk.org, or live web chat with us today.

Caution: Please be aware that some of the language used in this video may cause offence. 

Happy holidays from MS-UK...

Posted on: December 21 2018

Hello,Photo of Amy Woolf, CEO at MS-UK

I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.

This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.

We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.

Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.

Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.

Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.

Best wishes,

Amy

Amy Woolf, CEO

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