Unfortunately, multiple sclerosis is often misattributed to other conditions when symptoms first appear as it shares so many characteristics of other often benign conditions. My MS was almost missed when my first relapse was diagnosed as vertigo. If I hadn’t pushed to keep investigating my symptoms, I would have seen a physiotherapist to treat vertigo and as usual for relapsing remitting MS my “vertigo” would have been treated as my relapse corrected itself within a few weeks. My MS could have been missed.
Regardless of whether this is your first visit to a neurologist for investigation of a potential MS diagnosis, or your tenth visit to the neurologist as a check up on the progress of your MS, some of the following questions are worth asking or following up on. The medical field is an ever-changing landscape, as is our MS. To stay in control of all that we can aim to keep on top of any new improvements or changes to our situation it is worth revisiting this list each time you see your neurologist to determine if there are any questions or topics you need to cover this visit.
- Preparing for your neurologist
- What to expect at your first visit
- Questions for your first visit
- Post visit advice
- Subsequent visits
Preparing for your neurologist
The first thing I want to prepare you for is that you aren’t going to get a lot of answers to some of what you may consider are the basic questions, such as why me? How exactly will it impact me and when? How do I control it? Is there a diet I can follow to fix it? There are no direct answers to many of these kinds of questions due to the unpredictable and individual nature of MS. Every person is impacted differently so when your next relapse happens is not something anyone will know, just as exactly how you will be impacted is impossible to predict. When it comes to diet there are many suggested diets out there but no rigorously scientifically studied diet that doctors feel comfortable recommending. That doesn’t mean don’t ask though, as mentioned before the medical field is constantly changing and improving, asking your neurologist on updates regarding these previously unanswered questions is always worth it for the latest advice and guidance in managing your MS.
It is always worth asking what else can I be doing to help my MS?
The next thing is to get into a sharing mindset, with no fear of judgement, no shame or embarrassment. To get the best care that is the most appropriate for you it is essential that you are forthcoming with information and answer the questions your neurologist asks even if they are potentially awkward or embarrassing. In doing this it will allow your neurologist to get the complete picture of what is going on with you and what is important to you to ensure the best treatment plan suitable for you.
There will be a lot of information coming your way at the visit, consider taking a support person with you who you’ve discussed your questions and concerns with beforehand so they can help ask the questions if you forget and remember the information you were told if you can’t. You can also take notes, ask the neurologist to repeat something they said or for more clarification.
This is your condition, your experience, your life, so make sure you speak up if you don’t understand or if you have a concern.
What to expect at your first visit
At your first visit your neurologist will ask for a detailed medical history for you, but also for your family. You will be asked to list any medications or supplements you are taking and it’s important to be honest no matter what as medicines and supplements can interact poorly with treatments your neurologist may wish for you to undertake. Make sure you take any relevant test of scan results with you and have the details of your GP on hand to ensure they get copies of the medical reports from your neurologist. I have a great relationship with my GP who is much more accessible than my neurologist so is often my first call when something is happening with my MS. Having a good GP and good communication between your GP and your neurologist can really help ease the anxiety surrounding your diagnosis and treatment.
Your neurologist will ask about your experience – when did you symptoms start? what symptoms are you experiencing? how is it impacting your daily life? Are they improving or getting worse? Is there any correlation between your symptoms and other events, e.g. you feel tingling in your legs when you workout, or your arm becomes numb when you’re experiencing moments of high stress? In the moment it can be hard to remember all of these things, feeling a bit like you’re on the spot to remember fine details. It is worth it to keep a journal just for your MS experience and in it detail your symptoms, when they happen, what’s happening at the time, what makes them better or worse and of course the date and time of your experience. That way, when you visit the neurologist you can refer to your journal to answer their questions. Remember, only you know what’s happening in your body on a day to day basis and the neurologist is relying on you to communicate this at the time of your appointment. They will be taking in a lot of information just as you are on the day and making the best recommendations and decisions based on what they learn about you and your condition.
Take the time to ensure you feel understood, and that you too understand.
Your neurologist will also undertake a neurological exam. This is a lot of pushing and pulling of your limbs against theirs to test strength, balance and symmetry. They will tap different parts of your arms and legs to test reflexes, ask you to read eye charts, walk in a line, squat, do things with your eyes closed, and all these little tests tell them more about how the signals from your brain are communicating with your body.
Questions for your first visit
- Are you the right neurologist for me?
- What kind of MS do I have?
- What are the treatment options?
- How will I know if my treatment is working?
- How will this treatment impact my quality of life? What are the side effects?
- How will this treatment, or my MS, impact my sex life?
- What are the pros and cons of taking an aggressive approach to treatment?
- If it were you, what would you do?
- What should I expect to experience now that I’ve had this relapse?
- What about my plans?
- What is the plan for the next 6 months?
- How do I contact my neurologist between appointments?
- Should I get a second opinion?
Are you the right neurologist for me?
This question is important as whilst neurologists are incredibly smart and have studied for a long time to get where they are, they may be experts in different fields. You may be visiting a neurologist who is an expert in treating strokes, or Alzheimer’s, or MS, so it’s worth asking if they are the right neurologist for you, and if not, can they recommend someone who is. My neurologist is fantastic but she is a stroke specialist, for my care she consults with another neurologist who does specialise in treating MS.
What kind of MS do I have?
This seems a simple question but it is important to be clear on what kind of MS you have (CIS, RRMS, PPMS, SPMS) as that changes the potential outcomes and treatment patterns. Be sure you leave your appointment clear on what MS is, what kind of MS you have, or that you and your neurologist have a plan to determine what kind of MS you have.
What are the treatment options?
This seems a straightforward question but I didn’t push to learn more about this with my first neurologist. He assumed I knew what MS was and that I already knew about the most popular and simple treatments and that we would start with that straight away. When I saw my second neurologist she sat me down and went through a comprehensive list of the available treatments, when they are used, what the side effects are, the pros and cons and sent me away with some reading material to take the time to educate myself before our next appointment to talk about what treatment option was right for me. There is a fantastic document here that lists the current treatments available, how they are administered, potential side effects etc that can help you learn more and feel more empowered to make the decisions surrounding your treatment.
How will I know if the treatment is working?
Unfortunately, there is often no definitive way to check if your treatment is working, only if it’s not working. Even on medications you may/will have relapses, however the medications should reduce the frequency and severity if they are working. Your neurologist will be able to walk you through each treatment option in far greater detail and reassure you on the effectiveness of your chosen treatment.
How will this treatment impact my quality of life? What are the side effects?
Every treatment will impact people differently, and the side effects from each may be something you can tolerate or something that will negatively impact your life. With a treatment like Tecfidera it’s very straight forward, 1 tablet twice a day so not invasive (as opposed to some infusion therapies for example). However, Tecfidera has a potential side effect of hot flushes. Personally, whilst they were uncomfortable, I was able to tolerate them fairly well when I was on this treatment but I do know other people with MS who reacted more severely with the hot flushes to the point where it was negatively impacting upon their quality of life. The goal of any treatment is to limit our disease activity and does not necessarily directly address the impacts on our quality of life. Those aspects, our social life, physical activity and mobility, independence and personal fulfilment, all matter when considering a treatment path – what’s the point of treating the disease if you can’t live a life that feels enjoyable or allows you to interact with the different aspects of your life in a meaningful way? Remind your neurologist that these things matter when making this decision and work with them to find the best treatment option for you.
Related to this question is another that is important to consider, how will this treatment, or my MS, impact my sex life? This seems like an embarrassing question, but it’s an important one to consider. It is known that some medications with lower or heighten libido and this may be an important consideration in treatment choice and your quality of life. Some symptoms and long-lasting impacts of your MS may also impact your sex life and it is important to understand how and to communicate that to whoever you feel needs to know. This will help them to understand your needs and restrictions moving forward.
What are the pros and cons of taking an aggressive approach to treatment?
The medical field tends to err on the side of caution and be conservative when it comes to treatments, and rightly so. However, with a condition like MS that is so unpredictable and potentially devastatingly disabling at the next relapse its worth asking the question of whether an aggressive approach to treatment is suitable or advisable. Different neurologists with have different opinions but at the end of the day they want to ensure we are kept functional and our MS activity to a minimum for as long as possible. Whether you want to take an aggressive approach with the potential side effects from treatment is completely up to you, but it may be worth having that discussion to know what your options are.
If it were you, what would you do?
I have asked this of my neurologists to get an understanding of what they would do. They seem people with this condition, and other neurological disorders, daily and so are the closest and most experienced in seeing the impacts of these conditions. Whilst you may not agree nor do what they claim they would do in your situation, it can be enlightening to know what they would do.
What should I expect to experience now that I’ve had this relapse?
Again, as MS is such an individual and unpredictable experience, what you can expect after a relapse is completely unique to you. Your neurologist will be able to fill you in on the most common experiences, such as heat or cold sensitivity, your symptoms coming or going and changing in intensity or frequency and whether that is normal or a sign that your MS is active. Fatigue is one of the most commonly reported experienced of people with MS and your neurologist will be able to talk you through that and how best to manage it. It’s important to remember that not everything you experience will be due to your MS. I’ve got a teething toddler who doesn’t sleep, I’m working full-time whilst also trying to run a house-hold as well as trying to stay fit, maybe I’m totally exhausted at the end of the day, or sometimes half way through the day because anyone in my position would be even if they didn’t have MS! It’s going to be hard to be sure of what is the MS and what isn’t, and there will be a lot of potential for anxiety there so be sure you discuss this with your neurologist.
What about my plans?
Planning on starting a family or having more children? Moving house soon or buying one? Thinking about changing jobs to reduce stress or potentially increasing stress moving to a new position at work? These are all things you should discuss with your neurologist as the outcomes can change your potential treatment plans. For example, as a woman of child-bearing age, family planning is a massive consideration for my treatment and was one of the first things my neurologist was sure to cover with me. Whilst MS isn’t considered a heritable condition, there is an increased risk of passing on those genes that made us more susceptible to developing MS. This, in my opinion, isn’t a reason to not start a family but it is something to discuss with your doctor so you understand. Further, some treatments are not safe at all during pregnancy, or have to be washed out of your body 12 months before you start trying for a baby, others are safe for the beginning of pregnancy, or are safe during breast feeding whilst others aren’t. Having MS shouldn’t stop you from doing the things you had planned on doing, like having a family. All it means is that now you may have to plan a bit more, or at least consult with your neurologist regularly when things change, whether you know they are going to or they happened all of a sudden. That constant and clear communication with your neurologist will make all the difference to your quality of life in the long run and to ensuring you can fulfil the plans you had for your life the best you can.
What is the plan for the next 6 months?
As the appointment is coming to a close make sure you know what is going to happen in the next 6 months. Are you going to start on this new medication and review it in 6 months? Do you have more blood tests to take or an MRI? Any referrals to other medical professionals for follow-up treatment that has to be organised? Come out of your appointment with your neurologist feeling like you have a plan for the next 6 months as sometimes when your MS is being really active and you feel like you’ve lost all control, having that plan for the next 6 months, even just the next month, gives you something to hold onto, gives you a sense of control and stability in what can be a scary and unstable time.
Leading on from this make sure you ask how to contact your neurologist between appointments. Clarify with them when you should contact them, what you should contact them about, when you should see your GP, when you should go to the emergency room, who can you contact if you want to talk through your symptoms or if your symptoms have changed. Make sure you have a plan of who you can reach and what you can do when and if things change and that you and your neurologist are on the same page about it. I had terrible trouble trying to reach my neurologist when my symptoms changed which led to a lot of unnecessary stress and anxiety. This was a topic I hadn’t covered previously and ultimately it turned about to be a communication issue between her receptionist and her that my messages were not getting through. Once we discovered this issue, we fixed it. I now feel confident that I can contact her when I need to and that I have an idea of when I need to.
Finally, should I get a second opinion?
When I asked this my neurologist was incredibly supportive of me seeking out a second opinion. This was a second opinion in relation to my treatment choice, not my original diagnosis, but either way it is worth questioning your neurologist on seeking a second opinion and going through with getting that opinion. It doesn’t hurt to get more information and can make deciding how to approach your condition somewhat simpler.
Post visit advice
After your visit I recommend you try to write down or otherwise record as much as you remember from the appointment, if you haven’t already. There is usually so much information being thrown around the room during these appointments and I always think I will remember everything but it can be so easy to forget something you wanted to follow up on when so much is going on. It’s important to remember that these can be emotionally charged visits and you’re unlikely to remember everything perfectly when your emotions are running high.
Make any of the follow up appointments you need to, organise for any tests that must get done as soon as you can so you get that off your mental load. If you’ve decided on a treatment course, start taking those medications immediately or organise for them to begin as soon as possible. Remember to record and report on any side effects to your neurologist as soon as they appear.
Be sure you know what’s happening 6 months from now, that you and your neurologist have decided on a plan moving forward and how best to contact them, and whether to contact them or your GP if something changes.
For subsequent visits, revisit this list of questions and see if anything has changed that warrants asking these questions again. Better yet keep and ongoing list of questions between appointments that you update as you get answers and as you think of new questions to take to your appointments. On the day of your appointment you can look through your list and pick out the issues or concerns that are the most important and you feel definitely need answers to and focus on those during your appointment.
At the end of the day MS is a unique and unpredictable condition. Your experience will be your own and thus your treatment choices and decisions around management of your MS is unique to you. There are a lot of unknowns surrounding MS that even the best neurologists won’t be able to shed light on for you and we need to learn to be okay with that. That doesn’t mean we give in or give up, it doesn’t mean we stop asking questions about those unknowns, it means we don’t let those unknowns, those uncontrollable factors, dictate our quality of life. Most importantly the relationship you will have with your neurologist will be a long and intimate one so ensuring you have a neurologist who you feel listens to you and that you able to communicate fully and openly with, who can explain things in a way that is accessible to you is incredibly important. It is worth the effort to find a neurologist that fits with you, MS is difficult enough as it is, having a neurologist who understands you makes the whole experience much easier.