I’m One of the Forgotten Many: Living with SPMS

It is something that I have noticed over the years through my own experiences, but it has also recently been confirmed via The Forgotten Many report: there are significant service gaps in the NHS for people with Secondary Progressive Multiple Sclerosis (SPMS).

I am one of the forgotten; I’m not on any disease-modifying drugs (DMDs) and, until this week, I didn’t even have an MS Nurse (and it took me calling several different departments to finally get one). Why? The only thing that I can think of is because I am not on any kind of treatment that may necessitate regular blood tests or surveillance of symptoms.  Instead, I just have worsening disability, increased spasticity, regular fatigue and ‘cog fog‘, all of which impact both my personal and work lives.

Secondary progressive multiple sclerosis (SPMS) is a type of multiple sclerosis (MS) that the vast majority (about two in three) of those with a relapsing form of the condition will go on to develop. SPMS has a significant impact on those with the condition, which causes irreversible disability, cognitive decline, bladder dysfunction and considerably impaired mobility, among a range of other symptoms.

• The Forgotten Many (June 2020)

I would highly recommend reading the report; it calls on commissioners, specialised MS services and MS charities to work together to identify patients, look into regional variations in care, use explicit guidance for SPMS diagnosis and to develop a specific care pathway for those with SPMS.  I thought it might help to highlight my experience as ‘one of the forgotten’… I’d be interested to know whether it is the same for any other readers with SPMS?

My Experience of Being One of the Forgotten Many

Before SPMS…

I was diagnosed with Multiple Sclerosis back in 1994 when I was 15 years old; hard to believe that it was 26 years ago now.  I actually had my first relapse a couple of years before, at age 13; optic neuritis with a blank spot in my vision. This was when DMDs for MS were in their infancy and my neurologist at the time was reluctant to give me any; I guess he thought that the ‘wait and see’ approach was better.  But because I never tended to have more than one relapse a year for the first few years, I never hit the ‘magic two’ relapses a year which would mean that I was then eligible for a DMD. I did have an MRI to confirm diagnosis though.

Was I followed up or supported by an MS nurse? No.  Did I have regular appointments with a neurologist? Not unless I had a relapse and had symptoms that meant I had to see someone – I remember seeing a Urology Nurse when I had to learn to self-catheterise during one of my relapses. In fact, from the age of 17 to 25 I had no relapses and no noticeable symptoms and I never saw anyone about my MS. I pretty much forgot I had it, to be honest, and concentrated on being a normal 20-something – going to uni, starting a job and pretty much just having a fun time.

Three mild optic neuritis attacks 18 months apart still did not warrant me to start on DMDs, according to the neurologist and he even said that my MS was considered ‘benign’ in form. ‘Yay!’, I thought, ‘benign means that it isn’t serious’.

What are some of the synonyms of ‘benign’? Warm, friendly, kind, non-hostile, agreeable and good-natured.  That’s not a bad way to describe my MS, is it? I lived safely in the knowledge that my MS was just a mild form, I was going to be one of the people who doesn’t get SPMS because my disease was benign.

Until it wasn’t.

The Struggle to Confirm SPMS

Despite a lack of relapses, I knew that I had started transitioning into SPMS soon after my son, who’s now 12, had started school. I remember that by the end of his first year, I was struggling with foot drag/drop foot, which I had never had before and it seemed to be worsening. After seeing my Neurologist’s registrar, who said that my worsening mobility was merely ‘fatigue associated with exercise’ and very common in those with RRMS, I was left feeling defeated. I knew that something was different, but I felt brushed off. My body felt different; it was suddenly doing things and acting in ways that it didn’t do previously.

A year went by with no further input from my neurologist, my walking got worse and I was given a crutch from the Occupational Health physio at my work after I requested an appointment. I started having fatigue and heat intolerance that would floor me for days. At my next Neurology appointment, I asked for an MRI and said I thought that I was SPMS now – no relapses for 9 years, gradual loss of mobility… exactly what the literature says about SPMS. But the only thing the letter said after my MRI was that my neurologist recommended starting me on a DMD – and I would have to take a 4 hour round trip to go and collect it every month as they couldn’t send it to me, even though it was tablets (Tecfidera). Well, I refused as I knew that I wouldn’t be able to do that, having young children, fatigue and mobility problems, Instead, I started the Overcoming Multiple Sclerosis Recovery Programme, which gave me the first ray of light at a very, very dark time in my MS journey.

Looking Back in Hindsight

Looking at it now, almost 6 years on, it is clear that the MRI showed that I still had inflammation showing up and that is why the neurologist wanted me to start a DMD. But no-one said that. I didn’t realise that you could have inflammation that shows on an MRI scan but doesn’t lead to distinct relapses. I was obviously in that ‘in-between’ bit, where RRMS starts becoming SPMS… but, again, no-one said that. I didn’t have follow-up chats about my MRI, there was no alternative to travelling to get the meds, despite me asking. In fact, when I next saw the Neurologist the year after being offered the meds in the first place, he said I was a ‘tricky patient’ because I didn’t take them. To cut a long story short, I ended up getting the Tecfidera sent to me (new rules about postal delivery), taking it for a year and seeing no benefit, as I still didn’t have distinct relapses and my lack of mobility now necessitated the use of 2 crutches and a mobility scooter.  Still, no mention of SPMS, despite me frequently asking whether the term applied to me. No offer of support from other services, for example, physiotherapy, unless I asked for it.  That’s why I decided to ask for a second opinion.

Finally – SPMS Diagnosis

In August 2017, five years after I suspected my MS had turned to SPMS, my new neurologist uttered the words, ‘yes, you do have secondary progressive ms’. I finally felt validated. I knew my body and I knew that what it had been doing over the past 5 years was progressive in nature, I could feel it. I was living it.  My new neurologist also confirmed that I was having new inflammation occurring alongside the progression and offered me Haemopoietic Stem Cell Transplant (HSCT) to try and stop this.  There was never any promise that it would help my mobility or other symptoms to improve, but if it could stop new damage from happening (which could lead to even worse disability in the future) then that would be a good outcome.

Read: The HSCT Chronicles

And that’s where I am now… having had HSCT and it is deemed a success, as it seems to have stopped the inflammation, according to MRIs, I am back to the yearly check-ups.

Is anything different, now that I have had the confirmation of SPMS?

Well, not really.

Making My Own Way

The problem with progressive MS is that it is, well, progressive.  That means that despite my HSCT, walking is even more difficult and I have more and more spasticity in my legs. I’ve had to make several phone calls to find out who I come under in terms of MS nursing (with neither my local hospital nor treating hospital offering support) and other services, such as physio, offering only specific, time-bound support before discharge.

I think the biggest thing that I have noticed is the need for me to advocate for myself and chase, chase, chase. Nothing is just there. I have a known progressive disability, but I have not been highlighted by my GP surgery as someone who maybe needs special support.  The GPs offer clinics for other health issues – diabetes and asthma – what about known neurological conditions? I have had to research home adaptations and called the local council off my own back to see if I can have a referral to social care support… It is just tricky to know what there is if no one tells you what is available.  I have tried to help myself as best as I can through diet, yoga, meditation and vitamin D supplementation. I have had community Occupational Therapy come to my house to see if any adaptations can be made and because it is an old, Victorian semi, none can.  So now what? What is going to happen as my health worsens and I can’t get around my home?  What happens to those people who are not confident in advocating for themselves and their own needs?

A Plea

So, this is a plea to the Powers that Be – just make it easier.  Those of us with Secondary Progressive MS are here, we need help.  We are living with uncertainty, often in pain with little support. Some of us are parents, some don’t have partners. We need help to be the same in rural Lincolnshire as it is in the biggest cities with the most specialised doctors. We need someone to see us regularly, to make sure that we are ok and that our pain and symptoms are managed as best as they can be.

Those of us with Secondary Progressive MS need to be consulted about what we need.  How to make things easier for us. Some mental health support around coming to terms with a whole new diagnosis, an uncertain future and the grief associated with it.  We need MS nurses who catch up with us every few months, even if it is just over the phone just to touch base and make sure we’re ok.

We need to be ‘seen’.

Till next time,