Jenny Time for a quick catch-up with what’s been happening in my MS-y life (MeSsy?). To be honest, I can’t quite believe it’s the year 2025 – that year still sounds like it should be far, far into the future. Then I remind myself that I have a son who is turning 18 this year and a marriage that has lasted for 20 years in November (albeit we had a tiny blip of separation we managed to work through). How extraordinary is that for someone who feels like they’re still 25?!
I started this blog back in 2016, when my children were eight and 6 and, since that time, I have gone from Relapsing Remitting MS (RRMS) to Secondary Progressive MS (SPMS), and from walking (occasionally) with a mobility aid to using a wheelchair when I’m outside of the house. I have also tried a couple of different disease modifying drugs (DMDs) and treatments, including Botox for my spastic limbs, an FES (Functional Electrical Stimulation machine) and a stem cell transplant (HSCT).
Thinking About MY MS
One of the main things that I think about is how much my mobility and other MS symptoms – cog fog and heat intolerance, for instance – have increased in that time. But, reflecting on my experience of living with MS for 30+ years, I also think about how hard it has been to get support – and, more importantly, regular and ongoing support – from healthcare professionals. Treatments have been offered that take place two years after I’m referred and in locations that are 4-hour round trip away for a half-hour appointment. Botox treatments, which are meant to take place every 3 to 4 months taking one year (and counting) between treatments. I know that part of the reason why my MS care is so fractured – is because I live in one county and my neurologist is in another. This means that I can get some things under the neurologist, but other things I can’t.
Don’t get me wrong – until 2018 I worked for the National Health Service (NHS), and I understand the pressure that they are under. But I find it very unfair that certain illnesses are given priority over ongoing progressive illnesses and chronic illnesses– even if the symptoms and needs of the patients are the same. I always remember the OT who assessed me for a blue badge telling me that MS is not a “sexy” disease (by this, I assume she means one that’s in the spotlight for funding) and that I needed to emphasise how much my crutches make me out of breath rather than the fact that I couldn’t walk far.
So, what’s the answer?
Well, in my experience, it’s the need to advocate for myself. I need to chase things up constantly, learn about treatments and request second opinions. I first did this when my neurologist rejected the idea that my symptoms reflected that I was moving into secondary progressive MS. Requesting a second opinion from a different neurologist confirmed that yes, I had changed into SPMS with relapses and that there was something we could try (HSCT).
I’ve had unwavering support from my parents, who were both medical professionals before they retired, and they have recently offered to pay for another second opinion from a private neurologist who specialises in MS. This one is based closer to my home. I don’t know exactly what I can expect from it, but I hope that he might be able to offer a more streamlined service where I don’t have to chase up every single appointment or go from city to city to access treatment. Maybe there is nothing different that they can offer, but I’m grateful to have the opportunity to at least discuss this. I’m so aware that there are people like me who do not have the funds to go private or the confidence to be able to question their healthcare team.
I looked up how to advocate for yourself, using an AI search, and this is what came up; I would say that it’s a useful list to keep when considering your own health needs:
- Ask questions: Ask your healthcare provider questions, especially if you don’t understand something.
- Take notes: Take notes about what your doctor says, or record the conversation.
- Keep records: Keep track of your medical appointments, test results, and medications.
- Bring a support person: Bring someone you trust to help you take notes, ask questions, and advocate for you.
- Seek a second opinion: You have the right to get a second opinion from another doctor.
- Research health: Learn more about your condition and the treatments available.
- Follow up: Follow up with your healthcare provider to make sure you’re getting the care you need.
I feel like I have gone off on a bit of a rant, but I hope by writing this blog I’m encouraging others to question things if they don’t feel right. You are the person who is in control of your body, and who knows it best.
