It’s not like there aren't plenty of other things we need to remember in life…. And perhaps throw a mild dose of MS ‘cog fog’ on top and by the time you finally sit down with the neurologist, your mind goes blank!
Hopefully this list – compiled with the help of neurologist Dr. Todd Hardy and MS Nurse Kaye Hooper – can help you write a list of questions that will make your next consultation with the neurologist a little less scary, a little more enlightening and a whole lot less stressful.
1. Anticipate what your doctor will ask you:
No two consultations are the same, as your neurologist will really tailor each appointment to suit your own particular set of circumstances. However, it can help to get your mind around the basics before the appointment.
“If this was the first time I was seeing someone newly diagnosed with MS, I think it’s important that they have a grasp of their other medical history too,” says Dr. Todd Hardy. “That medical history – including a family history of any neurological cases – is very helpful in putting everything into context.”
Providing a medical history to any health professional can be an extensive process, so noting things ahead of time can be beneficial. Listing any medications you are currently taking, including any vitamins, should also be noted as part of this history.
Concisely thinking about the problem or concern before you walk into the doctor’s room is also extremely important. “A good way of thinking about these concerns is to list out the symptom, note when it first occurred and for how long and what part of the body it affected and perhaps if any other symptoms were experienced at the same time,” explains Dr. Hardy. “Once I’ve got the basic structure of what’s going on with the history, I can then go back and ask more questions to clarify any parts about which I need to know more.”
If this is not your first neurological consultation, your neurologist will be really interested in talking about whether you’ve had any neurological symptoms that might suggest a MS relapse since the last consultation.
It won’t be uncommon for your neurologist or MS Nurse to ask a lot of other questions – particularly about other symptoms – which may seem unrelated, but remember, they are just being thorough and vigilant.
2. Questions about new symptoms:
Talking about new symptoms or incidences of a relapse are quite important for the neurologist to know. If you have had a relapse since last seeing your neurologist, think about when the relapse happened and optimally try to note the dates. Also note what you may have been doing and how long the relapse lasted.
“If a patient puts thought into their symptoms and how they’re feeling before coming to see me, it assists me greatly,” explains Dr Hardy. “Having some of those details at the ready allows me to get a sense of how they are doing quite quickly, allowing me to spend more time later in the consultation talking about other aspects of their MS and helping to answer any questions.”
No one likes to feel rushed and a bit of pre-appointment preparation can help you feel more comfortable and able to discuss the things that are important to you, but also assists the neurologist or MS Nurse get to those areas faster.
“I’m happy for my patients to mention all symptoms that are of concern to them, because I don’t expect them to be able to know what may or may not be a symptom of MS,” says Dr. Hardy. “If something is worrying them, I’d prefer they raised it so as we can determine whether it would be something we need to address promptly or if in fact, it’s something that we need to note but not necessarily do anything different about, other than monitor.”
3. Discuss medications and other aspects of your treatments:
Your neurologist will be particularly interested in how you’re going with your treatments. They will want to know if you’re still taking the medications and how often (this is called ‘compliance’) and also if you’re feeling any side effects from taking those treatments.
“I’ll also ask lots of questions about other worrying symptoms so as I can ascertain whether those symptoms may be related to medications.”
Sometimes it can be hard to know if your symptoms or how you’re feeling is related to the MS or a medication but try to make some notes before seeing your health professional about things that are worrying you.
“I also tend to check in with my patients about any new medications they may have started taking, because of the potential for various interactions, or because these medications might also be contributing to new symptoms they are experiencing,” says Dr. Hardy. “I always like to know if my patients are doing anything different, so I can see how it affects them – positively or adversely.”
4. Ask about referrals to related specialists
If you’ve already spoken about some of the symptoms, a great follow on question is what other specialists or allied health professionals may be able to help. MS Nurse, Kaye Hooper explains how – at this time – the damage done by MS can't be repaired but there are ways to limit the impact of secondary problems that can occur.
“Referrals to another specialist can be valuable and make a real difference to daily life,” says Kaye. “For instance, a physiotherapist or exercise physiologist can advise the best ways for you to exercise, so that you can strengthen and preserve your wellbeing and mobility.
“An assessment by a urologist will help you understand and manage bladder issues that may bother you.”
Your neurologist or MS Nurse will have a network of other specialists who have experience in treating people with MS and you can ask them about this. Specialists keep each other in the loop and will include each other in correspondence to make sure your MS team of health care providers are kept up to date on your comprehensive care.
“And don’t forget about the role your GP plays in managing MS,” concludes Kaye. “It is wise to get advice from your GP about general health matters, such as exercise and eating well, ceasing smoking and also supporting mental and psychological health. Everyone needs regular check ups and not everything is caused by MS!”
5. Clarify when to call the neurologist / MS nurse:
The early days after diagnosis can be a steep learning curve as you navigate the health care system and digest all the information about MS and how it affects you. “If something is worrying you then you should call your neurologist or your MS Nurse,” explains Kaye. “Talk it over with them. It may be an old symptom feeling worse or a new symptom that you are unsure about.”
Over time you will start to learn about how MS affects you and what to do. “You will have some days of ups and downs but if the problem is constant or worsening then a visit to the GP can be helpful to see if there is something happening related to MS or something that is unrelated to MS,” says Kaye.
The GP will have letters from your neurologist that outlines your MS treatment and management plan. Of course, if you feel it is very urgent and an emergency, go straight to the closest hospital emergency department or call an ambulance.
🔹 Keep a little journal of MS symptoms. You can do this via the ‘notes’ section in your phone or several apps also exist to track symptoms.
🔹 Keep a little notebook on hand to write questions you may want to ask. You can then jot notes during your consultation as your neurologist addresses your concerns.
🔹 If you’ve read something about new research or a new medication, print those articles or mark them in your notebook for discussion with your neurologist or MS nurse.
🔹 Consider taking a family member or a friend to the consultation if you feel you need support or assistance remembering everything.
🔹 Ask for any drug names to be spelled out to you and ask for both their generic and brand names.
Dr. Todd Hardy is a Staff Specialist Neurologist at Concord Hospital, Clinical Senior Lecturer in Medicine at the University of Sydney and Co-Director of the MS Clinic at the Brain and Mind Centre. He is Co-Chair of the NSW MS Research Network and a Principal Investigator on a number of MS clinical trials. He is also Co-Editor of Advances in Clinical Neuroscience and Rehabilitation.
Kaye Hooper is a specialist MS nurse of 25 years, working as the MS Nurse Consultant at the MS Clinic at the Royal Brisbane & Women’s Hospital. She is also a founding Board member of the International Organisation of MS Nurses and founding president of MS Nurses Australasia.
Jillian was diagnosed with Multiple Sclerosis in 2012 at the age of 42. She is immensely proud to be an ambassador for global initiative Kiss Goodbye to MS and also spent two years as the writer in residence for MS Research Australia. Jillian travels extensively – a great perk of being a speaker and a writer – and something she engineered soon after her diagnosis with MS so she could live life to the fullest.