By Dr Sally Shaw
So. You've been diagnosed with Multiple Sclerosis (MS). From the moment you hear the words, the questions come thick and fast. So many questions. About MS generally. About causes. About treatment choices. About symptoms. About disclosure. About long-term prognosis. About complementary therapies. About how MS may interrupt your plan/job/relationships/family/sense of self (because nobody signed up for this!). I doubt there will be a time in your life when you feel more acutely uncertain of what your future holds.
When we don't know what to expect, or when we feel something is out of our control, we can often feel disempowered and hopeless. At the time of diagnosis, no one can tell you the answers to a lot of the questions you will have about your specific course of MS, so you may feel as though you have little control over anything coming your way. This can be a very challenging, and unsettling, place to be.
The top five questions I think you should ask following diagnosis have nothing to do with MS symptoms, your prognosis, or a cure. Rather, these questions have everything to do with finding some certainty in the new world of the uncertainty that is MS, and knowing what to expect from the people who know what they are doing.
These questions are not often thought of, or intentionally avoided, because patients feel like they 'shouldn't' question their neurologist for fear of saying the wrong thing, being too bold, or appearing as though they are being disrespectful. However, when you are preparing to live with a chronic illness, knowing what to expect from the people who can assist you, is key. It is, after all, your life, and if you are informed, and know the processes and pathways to accessing your health care team appropriately, you can make some great decisions early on.
Top 5 questions for your neurologist
1. Are you the right neurologist for me?
This can seem like a ridiculous question at the time of diagnosis. Your GP has sent you to a neurologist because they thought your symptoms were worthy of a referral to look more closely at the brain and spinal cord. The neurologist that diagnosed you obviously knows a lot about neurological conditions - they are a highly trained, exceptionally clever, person. However, your GP may have referred you to a neurologist who has a special interest in Stroke. Or Multiple Sclerosis. Or Epilepsy. Now that you have been diagnosed with MS, whom do you think you should see for expert advice? I would suggest that seeing a neurologist with a specific focus on MS, who is right up to date with research into new and emerging treatments and who sees a high number of other people with MS, would be a sound decision. So why not ask what their area of expertise is, and if it's not MS, ask them if there is another 'MS Specific' neurologist who they can refer you to.
2. Who do I call when I have a question about my MS?
You can ask a dozen questions in your first appointment post diagnosis, and still leave with a dozen more swimming through your head in the car on the way home. It is very helpful to know who your neurologist trusts to give you the correct information, when you are looking for some answers. They may direct you to an MS nurse, an MS Society, or to a medication support nurse. They may give you their own phone number or email address. They may ask you to write the questions down for your next appointment with them (and if that's next week, then you may be happy with that, but if your next appointment is in 6 months, you might prefer an alternative contact before then).
3. What should I expect from that person, when I call them with a question?
This post MS-diagnosis world is a new, and unfamiliar, one for everyone. You can feel very alone. It is important to know where to seek support and what to expect. And it is difficult to know what to expect, on many levels. If you are provided with the details of someone to call with questions about your experience of MS symptoms, should you anticipate that they will pick up the phone on the first ring? Will they be likely to get back to you within the day? Maybe within 48 hours? Is it better to email them or call them direct? The health professionals that surround you at diagnosis are wanting to assist you with your questions, but they are assisting lots of other people too, so it is best to know the process, and what to expect, so you can prepare for their style of communication as you move forward with MS.
4. How do I know when I should contact you for medical attention, and what's the process?
In part, this is another way of asking 'how do I know when I'm having a relapse?'. It's a really difficult thing to get your head around the concept of what makes a relapse a relapse, or when to 'call it' when symptoms get worse. And when you 'call it', what's the process? Should you go to your GP, call the MS Nurse, go directly to the Emergency room, or straight back to your neurologist? Ask for specifics, so that you have an action plan at the ready, and understand that it's ok to contact your MS health professionals when in doubt. Adjusting to the variable presentations of MS takes time and guidance.
5. Where should I look for information online?
It is the age of technology, and upon exiting the neurologist's office, the person newly diagnosed with MS, or their loved one, is already typing the letters straight into Google on their smart phone as they exit the building. Ok, maybe once they get to the car. It is not helpful advice to be told 'don't Google it' by the well-intentioned doctors and nurses who know the horror stories of MS that flood the Internet. So don't shy away from letting the neurologist know you have been/will be doing your own research. Instead, ask them for their advice on the best starting points for you, and any sites they recommend you avoid. This guidance will assist you to find the evidence based and trustworthy information, while limiting your exposure to unreliable or misleading content.
Feeling empowered to ask these key questions after diagnosis could enable you to know what to do when the unexpected happens. While you may not know exactly what's coming with MS, strength can be found in knowing what to do in the uncertainty.