I remember how terrified and uncertain I felt in the first days after I was diagnosed with MS. This is what I wish I could tell every newly diagnosed MS patient….
Being diagnosed with MS is a really scary time. The disease behaves differently in each case and no one can tell you how quickly it will progress or what symptoms you’re likely to exhibit. Initially you might not know if you have the Relapsing-Remitting or the Primary-Progressive version.
Well meaning people will want to discuss their uncle who has had MS for the past fifteen years, his disease progression and how he’s now wheelchair bound and now you find yourself wondering if you’ll be able to dance at your daughters’ weddings.
Don’t get ahead of yourself. Now you’ve been diagnosed and have started treatment, this might be the worst your symptoms will ever get. I’ve found being worried actually exacerbates my existing symptoms; so while it’s natural to be reeling from this news, try not to dwell on the what ifs.
OK, so you likely landed on this blog post because you were googling MS.
STOP THAT NOW.
Do me a favour and don’t google anything more. Finding the long list of symptoms that MS sufferers might develop doesn’t help anyone. If you absolutely must, stick to researching the treatments on offer to you by using Google Scholar.
Stick to science and avoid quacks who claim they can cure MS (and everything else) with soursop for the bargain price of <insert ridiculous figure here>.
Support groups might prove to be helpful to you in the long term but don’t sign up as a life member yet.
This was advice my Neurologist gave me back when I was first diagnosed and now I’m giving it to you.
I wasn’t sure why he’d said this until last year when some friends signed up to a MS fundraising walk and asked if I’d like to join them. When we arrived everyone was given a lantern – one colour for supporters, one colour for patients. Seeing everyone else carrying a red lantern and their various loss of functions was not good for my state of mind. It took me weeks to get out of my “what-if-my-treatment-isn’t-working” funk.
The thing is everyone’s MS progresses differently (refer point 1) and, more than that, newly diagnosed patients have so many more options that people diagnosed even ten years ago. Thanks to some brilliant scientific minds, the breakthroughs are coming thick and fast.
When you’re newly diagnosed it can feel like you have lost control of your life, but what choice you do have can make a massive difference. Living with MS is a life time journey, so choose the people who will walk with you wisely: surround yourself with a support crew that you respect and whom respect you.
If the first neurologist you see isn’t a good fit, ask your GP for a referral to someone else. The first neuro I saw had all the bed side manner of a wet sheet and took notes about my condition on the back of a used envelope. I left my appointment in tears; unsure if I was under investigation for cancer or something else. He and I were not suited for the long MS walk.
The next neurologist I saw immediately put me at ease, he outlined all the treatments available – pausing while the Big Sister interrupted to tell me the ipad was flat – and helped us decide what path was best suited to us. (He also sometimes hands out gold stars.) You and your neurologist are going to make big life decisions together, so find someone who’s a good fit for you and don’t stop until you do.
*Forgive the schmalzy title, I’m a tragic Darryl Braithwaite fan
The brain (especially a lesioned brain) is a powerful thing. Be careful about what messages tell yourself. Being diagnosed with MS is a pivotal life moment, but if you convince yourself that it’s the end of life as you know it, it probably will be.
It’s a difficult thing to do – I had to literally fall over a coffee sign to realise it myself – but state of mind plays a big part of staying well.
I’m not suggesting you can think yourself in or out of MS, but worry and sleeplessness exacerbate my symptoms and that doesn’t help anyone.
Today is World MS Day.
I think about World MS Day as an opportunity to be grateful for the hundreds of brilliant minds working tirelessly to find a cure, and a day for hope that 2018 might be the year we kiss goodby to MS.
I wish you all the best in your MS journey and when you’re having a bad day (and there will be bad days) remember you’re not alone, there is hope and we’re all rooting for you,