Mind you, I forget I’ve already made plans, I forget those schedules, I forget I have diaries and notebooks and I just as easily forget lists! Hence why my personal assistant aka my mother in Belgium, acts as my ‘medical appointment-PA’. She helps me remember hospital appointments days before they happen, and by gob, she sure doesn’t let me forget to not forget my lists of questions and overview of medicines when I have my neurological check-up.
In the absence of a PA, there are a few things you can do to prepare by yourself. In short, you want a list of when, what, how, how long and how bad.
Each point above or type of information mentioned, comes after many errors after trialling other ways of communicating my needs. Prolonged trigeminal neuralgia makes me sound like a drunk and that while being a straight-edged lady!
Depending on whether you need a change in medicines more than merely giving an update on past or new symptoms, list the information in order of priority, those that score higher in terms of importance put the top of the list of things to do. It helps both you and the neurologist get to the core of your appointment fast.
In my case, I often list symptom changes first as the fickleness of trigeminal neuralgia can kick every other symptom into another dimension. It is (TN) susceptible to moving dosages of pain meds around.
In the past I wrote the list of all my medication first, but I came to the realisation that the meds that have nothing to do with my MS, were often not copied in my medical file (something I find odd as you never know how medicines can interact).
But, I resist their resistance and do list everything I take from DMT (Disease-Modifying Treatment), nerve pain blockers, keeping-awake tablets, medication that reduce other MS symptoms, beta-blockers, antihistamines etc. I try to add some fanciful formatting like bullet points, symbols or checklists to draw their attention to the information and preferably in large font to help both of us see the next thing I want them to remember.
One of the best cheat notes is still the old symptom list which you can divide into these categories:
- When did you begin experiencing symptoms?
- Are they new symptoms or have they got 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 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?
Because of memory issues, I forget symptoms, even if I had them just a day before. For that reason, I always shove a printout of my notes toward my neuro or registrar as soon as I sit down. That way I don’t forget had a written note.
So make it as easy on yourself as possible and arrange transport on time. Or contact your MS clinic as soon as possible if you can’t make it because your MS is playing up. I know, it sounds stupid not to attend your MS check-up because of current MS symptoms, but I have been there. Trigeminal neuralgia blazing, being unable to sit in a waiting room because of the noise, the vibration of walking, the bright daylight, talking, remembering things because of the excruciating pain… on and on Like we all know, you only get MS if you have MS, so again, make it as easy on yourself as possible. Our neuro/medical team is our best friend and should be considered your lifeline.
So, grab that line, pull yourself onto dry land and share what your neurologist needs to hear, even if it sounds ridiculous. After all, they know what MS is on paper – nonsensical at best – but we know what it feels like to have MS, and we need to make proper sense of it. And that only works if you have all the information ready.
References
Neurologists: What to Expect at Your Consultation – WebMD
Be Prepared! How to Make the Most of Your Neurologist Visit
FACT SHEET Preparing for your Neurologist Appointment
Preparing for your neurological appointment, Ireland, Multiple Sclerosis & Me
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