multiple-sclerosis-s14-doctor-speaking-with-patientSeeing your neurologist can often make you feel anxious or afraid to speak up. Each appointment should be about exploring options, not about being bulldozed by a standardised litany of things you don’t want. Going in prepared will make you feel more at ease, so why not make a list of vital questions and things you need to discuss?

When you organise your thoughts, you feel more in control of the situation and sure of where you want to see your treatment go. After all, you are the one living with your illness. Don’t feel ashamed either in what you want to ask your neurologist, chances are they have heard similar things before, and they will be the least likely people to attack you for asking. Remember, the only silly question is the one that hasn’t been asked yet!

If I learned anything after living with MS for a little over a decade, it is to make the most of that precious little time with your neurologist. You might or will feel overpowered hearing “You have MS,” but when the dust has settled and if/when you are ready for follow-up appointments, don’t feel like you cannot be an empowered, in-sync person with MS.

However, some people opt for a more social relationship with their neurologist aside from having a truly medical interaction. It all depends on time, how well you know each other and on how much you want to get out of your appointment.

For example, during my last appointment, my neurologist and I talked more about books than we did about how well I was doing. While I felt invigorated having found a neurologist who is as crazy about books as I am, I later felt annoyed that I didn’t squeeze out more MS questions during the short time I was in his office. It is important so to ask the most important questions first!

Whichever way you want to go about it, lists or no lists, lists with bullet points, numbered questions, colour-coded questions etc., use a way that makes you feel in control of the conversation.

To start, write down your symptoms, no matter how incidental or unrelated to MS they might seem. Learning what is ‘just a symptom’ and ‘not a relapse’ is indispensable.

According to WebMD: “A relapse (also known as an exacerbation or flare-up), happens because new damage in the brain or spinal cord disrupts nerve signals. That’s why you might notice new symptoms or the return of old symptoms. A true relapse lasts more than 24 hours and happens at least 30 days after any previous relapses. Relapses vary in length, severity, and symptoms. Over time, symptoms should improve. Many people recover from their relapses without treatment.”

Next, list all your medications, the dosage, when you take them and if you feel they’re working for you. Also, list supplements and vitamins, even those you take for other illnesses you have. Sometimes they can cause interactions with your MS medicine, and a safer alternative can be found. Remember, though, to let your medical team know when you stop taking your DMT if you feel it’s not beneficial anymore. They will help you find a solution to your DMT worries.

If you attend different hospitals and/or primary care services, don’t forget to take information about your medical history, details of scans or lab tests, and their results. This way your neurologist can better pinpoint what he or she needs to do for you. What will also help your neurologist is including any holistic treatments and lifestyle changes, like side effects, stressors or changes in diet, exercise or work. After all, MS care is a multidisciplinary approach that aims to get you the best care possible.

Something I often tend to overlook is the importance of taking a friend or family member with you to neurological appointments. It may be that you forget to ask certain questions or remember symptoms, so having someone go with you can work wonders. That person can even write what your neuro is saying, so do think about the benefits if you rather go alone.

If you had any new tests, ask for the results and if you can get a copy. Chances are that you might need certain test results to give to other medical service providers.

Just like you have questions for your doctor, he or she will have some for you, like:

  • When did you begin experiencing symptoms?
  • Are they new symptoms or have they gotten worse since your last appointment?
  • How long did your symptoms last?
  • On a scale of 1 to 10, how severe are your symptoms?
  • Is there anything that seems to improve or worsen your symptoms?
  • Is your DMT (Disease-Modifying Treatment) working for you?
  • Are you feeling any side effects of your medication?
  • Are you happy to continue this DMT?
  • What do you think about receiving physio, occupational and/or rehabilitation therapy?

Make a top 3 of your most urgent questions for your neurologist, some might be:

  • What’s the most likely cause of my symptoms?
  • What kinds of tests do I need? Do they require any special preparation?
  • What treatments are available?
  • What side effects should I expect, and how should I handle them?
  • How can exercise help when I’m in pain all day, every day?
  • Is there any treatment for progressive MS?
  • Can I use alternative treatments?
  • How will care impact my life or job?
  • Can I join clinical trials?
  • How can exercise help when I’m in pain all day, every day?

One last yet quite important remark. If you are in need of medical help, please see a professional. Dr. Bing and Dr. Google can be a cheap way of self-diagnosing but they are not official, valid replacements for real medical or psychological diagnoses and treatment. Like Mark Twain once said, “Be careful reading medical books. You may die of a misprint!”

Good luck with your next neurological appointment!

(keep an eye out for lists of questions in the top menu; I will be adding some soon!)

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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