Quality of life • Article

It usually takes at least twelve years of intense, brain-crushing, soul-destroying study to become a neurologist.

That’s a lot of late nights burning the midnight oil, serious exams and a one-track mind, focused upon a single goal. So it’s no surprise if you find your neurologist might not have the greatest bedside manner, given that their own brains have been firmly stuck in triple their body-weight in books for over a decade.

I’m sure that when they sit across the desk from us, they would like nothing more than to dispense with our bodies entirely and instead open our heads and peer deep into our brains, rather than risking polite conversation and general niceties. I think they sometimes forget these brains come attached to real-life people, with real-life fears, families, friends, careers and the rest of the whole kit and caboodle that come with those grey, pesky muscle-masses.

But perhaps that’s just my experience:

I was MS-unusual in that I had no real warning of the onslaught that was to come; one day I was fine, the next I was in Accident & Emergency at my local hospital, unable to walk, talk or do anything else properly. A neurologist was finally found within the bowels of the hospital who promptly dismissed my fears of having multiple sclerosis (MS), despite my dad having died of complications from his own MS when he was 35. According to her, I didn’t ‘present with MS’. Therefore I didn’t have it.

All well and good. But to cut a long story short, I nagged and cajoled to be taken seriously and was finally scheduled to have an MRI. So a couple of weeks later, weakening by the day, I had one. Then things moved very quickly. Between the time it took me to get off the MRI table with shaky legs and gather my belongings, I was summoned to have a lumbar puncture.

I was finally through the golden gates and due to meet a neurologist. I wrote down every single thing that had happened in the intervening months. I took my mum with me. I was prepared, and absolutely sure I would be diagnosed there and then.

Reader, it was a blood-bath and I staggered from his office battered, bruised and humiliated. In short, I had been dismissed. A few leaflets were chucked my way and I was told that I might, might not have MS.

The upshot of this whole sorry saga is that I was eventually diagnosed with a highly-active, rapidly-evolving form of MS.

Seven years down the line, I wouldn’t say I’m close enough to my neurologist to give him a high-five, but I’ve certainly learned a few things along the way and the biggest thing can be the most difficult – be confident.

You’ll need to be – you might just find yourself fighting your way through the system as I did. If you scurry away and wait for them to contact you again, you could have a very long wait. Of course, they are overwhelmed by sheer patient numbers, but your health/life/future are just as valid as everyone else’s.

Strangely, when I was non-diagnosed, I was allocated an MS nurse, which seemed almost as bizarre as being given a dedicated cancer nurse without being diagnosed with cancer. Plucking up the courage to leave messages on her answerphone wasn’t easy to begin with, but her answers reassured me. I pushed for further advice, explained in great detail what I felt were further relapses (putting the ‘multiple’ into multiple sclerosis) and nagged to have another MRI. I probably made a nuisance of myself and I felt guilty, but ultimately, I needed the relapses to stop and find some clarity in a hugely-confusing situation.

There’s a joke that ‘MS isn’t for the weak’ and it’s true. You’ll need to find inner reserves of strength you never thought you had, so it is important to surround yourself with a whole team of people who can help you through this. In some ways, the process of getting diagnosed was much harder than what followed – on that day, I was finally validated, I was taken under a team of experts, I had treatment options available.

I have a cousin who used to be an actress and she told me something interesting – often the cast would become jaded, performing the same play twice a day, day after day. But they always tried to remind themselves that for the members of the audience it would be the only time they would see the production and a whole lot of planning and anticipation was behind every person in every seat. This is exactly the same as neurology appointments – our care team will see hundreds/thousands of people every year, but you get to see them once. If both sides could see the other’s viewpoint, it would go halfway to helping our understanding of what it is to be both a healthcare provider and a patient.

So how can you demand more from your appointments?

• To start with, have a plan, be prepared. This is your chance to compress a whole lot of information into short points
• Try to start an MS ‘diary’, jotting down new symptoms, old symptoms reappearing and other MS-related appointments you have had, all with dates, and take it with you. This way, you can answer questions really quickly and get a lot more out of your neurology appointment
• Work out which information you want your neurologist to know. Again, be short and to the point
• Make sure you take a list of current treatments with you – I always, always forget to do this
• Take a friend or family member with you to help you feel more comfortable and also to chat through everything with afterwards, as you might not remember it all. Perhaps they could take notes for you
• Download a Talk to Your Doctor guide to help you consider any questions and concerns for your next appointment

Ultimately, no matter how much your neurologist has studied MS, they probably don’t have MS. For them, it’s the missing piece of the jigsaw – what exactly does it feel like to live with it? And this is where you come in. Try to convey how it affects your life, what your symptoms feel like, how it’s affecting your mental health.

You are the MS expert, an Expert by Experience, and it’s really important to keep this in mind when you’re tossed around in the whole health care system. It is vital that we demand more from our MS teams, and work in partnership with them. Don’t be afraid to ask for help or to question how your MS treatment plan is progressing. Explore all your options.

I know this can sound daunting, especially if you are new to MS, but there are many resources to help and support you. MS can feel isolating and frightening (it did for me), but if you are feeling this, it is really important that you reach out and make yourself heard.

No one needs to go through MS alone.

Assess your priorities and make the most of your appointments by completing our Talk to Your Doctor guide.