This section looks at a selection of the therapies being developed or awaiting approval at present. We encourage a person to be cautious about any treatment or technique that has not yet been proven to be safe or effective in the treatment of MS.
Your neurologist or MS nurse will be able to give you more information to enable you to make a decision about your treatment options.
Chronic cerebrospinal venous insufficiency (CCSVI) is a condition thought to be caused by constrictions of large veins in the neck and chest.
Hyperbaric Oxygen Therapy is a form of treatment in which oxygen is administered under increased pressure in a specially designed chamber. Hyperbaric oxygen increases the oxygen content in the blood and in different body tissues.
There have been a few clinical triaIs examining the effect of hyperbaric oxygen in MS. Reviews of these studies indicate that there is no definite beneficial effect. Usually hyperbaric oxygen doesn't cause serious side-effects.
More information is available at the following websites:
Rituximab is a re-purposed drug, meaning it has been used to treat other conditions for some time and is now being explored as a treatment option for multiple sclerosis. It has had a license for many years to treat certain types of blood cancer and other auto-immune conditions and there are phase 2 clinical trials ongoing in MS currently. Current trial results seem to show that it is promising as a treatment for relapsing remitting MS.
More information is available at the following websites:
Sativex is the world's first prescription medicine derived from the cannabis plant
There is a lot of interest currently in stem cell treatments for MS. Whilst these treatments are extremely promising, a lot more clinical and safety data is required. You can read more about the different types of stem cell treatment in our Briefing Document and Position Paper.
Stress is a normal part of everyday life and our stress response is the body’s way of protecting us. In small doses, it is a powerful force that helps us overcome challenges, excites us into action and helps us stay focused. Having a balanced lifestyle is the best strategy for managing stress but it is now during Christmas that retaining this sense of balance can be most challenging. Managing Stress Levels When it comes to Christmas time, the planning, shopping and socialising can send stress levels way out of control. Our reactions get in the way of clear thinking, we fail to accurately ‘read’ other people, decision making falls to the wayside and we ignore our personal needs. Living is not about avoiding stress but knowing how to manage your stress when you recognise it. Am I Stressed? Managing stress levels is the key to having a good Christmas. If the turkey gets burned, the dogs eat the cushions and discussions get heated, being able to manage your stress will help you stay balanced and, no matter what, come through the challenges. Know what stress ‘feels’ like for you and recognise some of the early signs: Physical signs Aches, pains Tense muscles Exacerbation of sensory symptoms (‘pins and needles’) Troubled sleep/fatigue Upset stomach (diarrhoea/constipation) Psychological Sign Hard to think clearly Feeling overwhelmed Irritable/short tempered Difficulty making a decision Behaviour Signs Minor accidents (dropping items, trips, off-balance) Increased smoking/drinking Unexplainable grumpiness Being ‘short’ with others. Managing and Responding How we manage and respond to stress is the key to achieving the positive outcomes to relieving the symptoms of being over-stressed. If you shut down, withdraw and disconnect from people when you feel stressed, try doing something that stimulates and energises you. Go for a walk, play with the children, play a game. If you get angry, loose the head with people and ‘see red’, you will respond best to something that soothes and calms you. Go for a walk, do some yoga stretching, relax in a quiet room for 30 minutes, listen to relaxing music Identify What Works For You We all have different needs and different methods that work for us. Building a ‘tool-kit’ of methods that help ease our stress ensures we choose suitable techniques at different times and situations. The more you allow stress to build up, the more difficult it can be to re-balance. Strategies to prevent this involved stimulating your senses to invigorate and soothe you. Techniques for stress relief will have immediate results and be something we can do straight away. Exercise, plenty of rest and relaxation are the overall ‘goodies’ to remember. DIY Stress-Busters/ Quick Tips for Christmas Calm! Move: Dance around, wiggle your toes/hands; do some yoga stretches, stamp your feet, go for a walk. Mindfulness/Meditation: Stay ‘present’ and focus on your breathing; use meditation techniques, be contemplative and just ‘be’ in the moment.. Taste: Sip a nice warm cup of tea; savour a nice piece of fruit and relish eating a piece of your favourite Christmas treat. Smell: Light a scented candle; make a mulled drink using delicious spices, fresh oranges and cloves/cinnamon; enjoy the smell of a ‘real’ Christmas tree, Hearing: Listen to your favourite music, sing Christmas songs, enjoy the sounds of nature when out for your post-dinner walk Touch: Pet the dog/cat, wrap up cosy and warm in a soft blanket, wear your favourite soft winter jumper, enjoy the hugs from friends and family. Sight: Snuggle up to a flaming fire, hang holly/ivy wreaths on your door, buy a Poinsettia, watch an uplifting Christmas film, cosy up with a new book. At this time of year, if you are fortunate enough to share it with family and friends, take time to be thankful and enjoy what is good about your life. Focus on what you can accomplish over the holidays and make the most of your time. Do things you enjoy with people you like and no matter what the Christmas challenges are, you’ll be set for calm start to the New Year 2019. Happy Christmas and a Peaceful New Year
In the throes of the Christmas Season, Niall McGahon delves in his experience of MS and shares with us how he deals with the uncertainty by keeping things in the moment, in the day. Read on to calm…. I am forever amazed at how the small things that you take for granted when younger have such a massive impact as you get older. “The evenings will soon be on the turn….” is a saying from my Dad when I was growing up (and still is for that matter!). It meant one of two things: the evenings would be getting shorter or they were about to get even longer! I loved the thought of the latter as it meant come March, the evenings would be longer, school would nearly be over and golf was the only thing I had on my menu! This has changed over the years, but my core excitement of the longer evenings has not changed one little bit. Warmth returns, growth begins again and last Spring (2017) was so very special- we welcomed our first child. This only confirmed for me that Spring truly is the most wonderful time of the year. Life regenerates and the cycle starts again, fresh growth appears in the trees and the bright colours are abundant in the sky. As the season turns, I look to Spring because it is quite the opposite of what I am now facing in my health. There is little regeneration and the cycle is not restarting. If anything, its quite the opposite and we are essentially trying to stop MS dead in its tracks; stop it so that I retain function and stay well. This is a particularly difficult time of year for me because it was 4 years ago this month that I found out that I had MS and my life was changed forever. Now, I am living life from day to day, week to week, month by month. Staying in the moment is welcome. However, not knowing how I am going to be when I wake up in the morning can impact greatly on the day and night I have. It can also have an impact on those around me- I am difficult to decipher and who knows what version of Niall they are going to get on any given day. On some days, I am nothing short of a pain in the ass. I try and catch myself but…thankfully, I have a massively supportive family near and far, a beautiful home, great friends and a good job. When I do wake up in pain (most days lately) I know its part and parcel of what I’ve got to deal with, difficult as it may be. Little by little, I am getting better at being kind to myself. I keep it simple. Daily, I have one of two choices to make- I can either have the outlook of Springtime, where the light is bright, where there’s warmth and life is in abundance or I can close my mind and let the winter darkness come over me. Yes, it is a difficult time of the year but I choose to use my Spring outlook and grasp whatever life has in store…no matter what way the wind blows this winter.
Living with a Neurological Condition in Ireland Neurological Alliance of Ireland (NAI) have launched a new survey "Living with a Neurological Condition in Ireland" to examine the practical issues faced by people with neurological conditions & their families. You can complete this survey if you are an adult (over 18 years), diagnosed with a neurological condition or if you are a family member currently caring for an adult with a neurological condition. The survey should only take 10-15 minutes to complete and your replies are completely confidential. The closing date for responses is Friday 14th December 2018. Get in touch If you have any questions about completing the survey, you can e mail firstname.lastname@example.org or call (01) 8724120. originally published 9.11.2018
This week Grace Kavanagh writes about what the International Day of People With Disabilities means to her and what we as individuals understand about living with a disability. I’ll forgive you if you weren’t aware that there was such a thing as International Day of People With Disabilities. I wasn’t either before some research. It is an initiative set up by the UN in 1992 to promote understanding of disability issues and to raise support for those with disabilities to enable them to participate equally in society. It is held yearly on December 3rd and the theme for this year is “Inclusion is for everybody”. The day is recognised at the UN headquarters in New York with organisations and groups around the world encouraged to hold their own events. I love the idea of social equality but think in reality we have a long way to go. Raising awareness is one thing but raising understanding and empathy is quite another and this is where I think the focus should be. So what do I as a person with disability think the International Day of People With Disabilities should include? I don’t think any one person can understand all the challenges people with differing disabilities face and I certainly can’t speak for everyone. I do however think that we all need to think a bit more about other people and try not to be entirely caught up in our own worlds. We have all been guilty of unknowingly causing issues for others by our actions so here are some things to consider in our everyday lives that might have an impact on people with disabilities. ● Viewing things from the perspective of the person with a disability would help us all to see how our actions can impede others. It could also help us to be less irritated or frustrated when we understand the challenges the other person is facing. ● Experiences that give an insight into the life of someone with a disability can really boost understanding. For example the MSunderstood cafe gives people the opportunity to view the world from the perspective of someone living with MS. I’ll be sending my husband when it comes back to Dublin! ● In a similar way, I know of a charity for the visually impaired that requires employees to spend time wearing glasses that distort vision and use a wheelchair so they understand the difficulties people they work with may have. ● I taught computing to a lady with hearing difficulties. She had a sign language interpreter who enabled her to be an equal participant in the class. I learnt to address my comments to her and not her interpreter, just as I would with any other member of the class. ● Think before you park your car! Parking on pavements or up on the kerb leaves no safe route for people in wheelchairs, while parking in disabled bays when you don’t need to means a person with a disability can’t use the facility. ● Don’t get me started on the pavements in Dublin! They are a hazard to everyone but in particular those with mobility issues. Try not to add to the problem by leaving obstructions like bins on the path. Disabilities aren’t always visible. You don’t know what someone else is coping with just by looking at them. They could be living with chronic pain but look fine. Try not to judge what you don’t know. Check out Grace’s blog, www.mycrazymslife.com for her perspective on living with multiple sclerosis. Join in the activities of the UN International Day of People With Disabilities click here
This week Aoife Kirwan writes about the upcoming event for Young People with MS on 29th November 2018 (6pm-8pm) in the Davenport Hotel, Dublin. Register for the event here For almost eight years I have been living with the knowledge that I have MS. My diagnosis came at a time when I was just getting started in adult life. Years of education were behind me and I was in the final months of my degree. Prior to my diagnosis, I had a very clear vision of what I wanted in life, what I wanted to do, to be, to become. This moment in time changed everything for me. The future I had envisioned for myself was now unclear. The main symptom that I had was optic neuritis in my right eye which left me with just about 2% vision in that eye. I had been working towards becoming a secondary school art teacher. I felt like I had to say goodbye to that idea, as I didn’t feel it would be a secure enough given the issue I had with my sight. I felt like I was at a crossroads. It was still early enough to change my mind about the best path forward but that didn’t make it easy. The promises that I had made myself were destined to remain unfulfilled. I feared what was to come because for years I had been looking in one direction and this diagnosis forced me to look around. It made me uncomfortable. The way I felt about myself and the way I felt the world saw me, changed. My sense of identity was shaken. I didn’t think a support group would be my kind of thing. I didn’t like the diagnosis; I was all about trying to be positive and felt that the niggling negative thoughts might grow stronger if I saw other people who were more seriously disabled by MS than me. What I didn’t realise then was that I needed connection. To speak to others my age who were living with MS. I needed information that was relevant to me, support around decisions that we often come up against in early adult life like education, relationships, self-acceptance. Early adult life sees people lay the foundation blocks for their future and I needed support with making my foundation solid. Next Thursday, November 29th MS Ireland, in collaboration with Novartis, is hosting MS Explored, an information and support event for young people living with multiple sclerosis (18-35). Speakers include Moira Tzitzika who will talk about Relationships and Intimacy. Moira has a PhD in Psychology and specialises in Disability Counselling and Sexual Medicine at the European Society of Sexual Medicine. Psychologist Karen Belshaw, founder of Stress Management Ireland, will speak on Mental Resilience and past-president of the Union of Students Ireland, Michael Kerrigan will show us Road-mapping for Success. This event will take place in the Davenport Hotel, Dublin from 6-8pm. A live stream will be available for those who are not able to attend in person. Students unions around the country have been incredibly helpful in organising on-campus hubs where the live stream will be shown. Questions for the speakers can be sent in by direct messaging our social media platforms. The event is free to attend but please register using the following link: https://www.eventbrite.ie/e/ms-explored-meeting-tickets-52707199653 This is a great opportunity for young people living with MS to meet with their community. Connecting with others who are at a similar stage of life and navigating similar issues can be a very empowering experience and I look forward to seeing you there.