The first 5 things you need to know about MS
Being diagnosed with multiple sclerosis (MS) can be an overwhelming experience. Processing the diagnosis and working out next steps is not always a simple task. But it is important to remember you are not alone. To help you navigate through this initial stage, we asked members of the MS community to describe the things that helped them through their early days of living with MS. To hear more from our MS One to One community, and to have your say, join the conversation on Facebook, Twitter and Instagram.
Receiving a diagnosis of MS can be frightening, but there should also be relief that you now have an explanation for the symptoms you have been experiencing. The complex emotions that you might go through can feel overwhelming and sometimes difficult to understand.
“Coming to terms with a diagnosis is life-changing. Like me, you may feel a sense of relief. Also like me, you might feel every emotion under the sun.” Barbara
There is no right or wrong way to feel when you’re diagnosed with MS, and it can be different for everyone. Although it might be tempting to push your emotions to one side, you must take the time to understand and work through them as an important part of processing.
“You have every right to feel whatever it is you feel. Scream, shout, cry. When you can think a bit more clearly, try to think about what you can do to deal with your emotions.” Barbara
And you don’t need to be alone in working through these emotions. Support is available and can be invaluable in helping you to make sense of your emotions and move forward. Read Barbara’s blog titled “How to express yourself in appointments” to help support the discussions you have with your healthcare team.
Learning to live with MS can sometimes mean learning to adapt. However, this shouldn’t mean you have to give up the things you love. Instead, start to think about how your life is impacted by MS. Then adapt and plan ahead to ensure you limit the compromises you make and are able to continue demanding more from your life with MS.
“Try to keep the bigger picture in mind – life is full of adapting and nothing stays the same. You don’t have the same energy at 35 as you did at 18 for example and MS is just a highly concentrated version of this.” Barbara
You may want to make a list of all the activities and tasks you have trouble with and take the time to consider how to best deal with them. Take a positive approach to continue pushing for the best life for you.
“I realised that I could make a “normal” life, even with MS. I realised that I was much more than a diagnosis.” Telma
Read Telma’s story if you’re looking for inspiration for your MS journey.
Although it’s good to be able to adapt and tackle the challenges of life with MS, it’s important to remember that if you are having to make more adaptations that usual, you may be experiencing new symptoms, or side effects from your treatment. Make sure you keep track of any changes to your condition and discuss them with your neurologist or MS nurse.
Understanding your MS and the types of treatment available to you can seem like a difficult task when you are first diagnosed. It’s now known that treatments called disease modifying therapies (DMTs) can help slow down the progression of MS and could prevent long term damage. This will mean that choosing a treatment is most likely a priority for your neurologist.
“When you are first diagnosed, the treatment you might need is probably uppermost in you and your neurologist’s minds, and it can seem confusing, frightening and overwhelming.” Barbara
Your neurologist is there to help you to understand your treatment options and guide you through the treatment decision-making process. Take the time to discuss your priorities, goals and MS treatment options with your neurologist.
“This is a moment when your neurologist is part of the process. It is important to have someone who is your main support and can to help you to understand your options.” Jacobo
“Chat through with your neurologist what their advice would be, making sure you raise lifestyle points...” Barbara
There are many different treatments available, and there is no ‘right’ choice. Try not to feel pressured. Take your time to the right MS management plan for you.
“Whatever you choose, it is personal to you and no one else.” Barbara
It’s important to remember that you aren’t alone when dealing with MS. You can find support in a variety of places. They can be friends or family, or they may be patient associations or online communities.
“If you are alone, things can seem more complicated to manage. Support can go beyond your neurologist, family and friends.” Jacobo
Building a network of people you can turn to for advice can help you to process information and overcome obstacles. The amount of support you want and where you go to find it is personal to you. It could be as simple as engaging with online communities...
“I use Twitter a lot as I can ask a question or whinge about something and have twenty replies within minutes. The support I’ve found has seen me through many difficult times. Remember, you are not alone.” Jacobo
...or you may want to become active with patient association groups in your area. The most important thing to remember is, support is out there if you need it.
If you’re looking to engage with people in your position, MS One to One is a fantastic online community of people living with MS from around the world. Join the conversation on Facebook, Twitter and Instagram to find your voice and demand more from your life with MS.
When you have MS, it’s important that you look out for yourself and act as an advocate for your own care. MS can be different for everybody which can make it a very personal disease. Nobody will know what you are going through as well as you. Consider your priorities and what you want to get from your life with MS, noting them down when you create your own personalised Talk To Your Doctor Guide.
“You know yourself best, so why not sit down with a bit of paper and make your own list? Stick it on the fridge so you can see it every day. It might sound a bit New-Age-y, but it really does work.” Barbara
“Keeping your normal lifestyle can be a huge way to stop those around you seeing you as the patient.” Jacobo
Remember, you are the expert of your MS. Work on building your confidence and becoming an advocate for yourself. Make decisions that best support you in living with the best quality of life possible and don’t hold back in making yourself heard.
If you are working through the early days of living with MS, would you agree the above are useful and first things you would try and put in place after your diagnosis?
Discussing treatment with your neurologist
Explore practical tips and advice on how to approach discussing treatments with your neurologist.
Is MS active all the time?
Learn about the underlying activity of MS and how the disease can still be active when you’re not experiencing any symptoms.
Understanding side effects and symptoms
Learn about the differences between side effect and symptoms and how to identify them.