Chris is 30 years old and has relapsing-remitting multiple sclerosis (MS). He lives in Cornwall with his wife and their young child. This MS Awareness Week he told us about his diagnosis and journey with MS so far, and why his MS specialist nurse is so important…
I was diagnosed six or seven years ago. A year before that I developed a range of symptoms over a few weeks or months, which were a bit odd. It was almost like being drunk – I had problems with motor control and walking straight. I wasn’t too worried; I had been to the GP a few times and they said it was probably a middle ear infection
I went back to the GP about 6 times over two or three months, and it was only when I saw a locum doctor that my wife who is a nurse insisted the GP made a referral.
After my referral I was diagnosed with clinically isolated syndrome. The consultant kept it positive saying some people only have one attack, but was also laying the groundwork for what may follow.
It’s disappointing that I had to feel like a lunatic leading up to that – it’s a shame. An earlier referral would have saved me from some weeks of stress.
After the diagnosis I was passed on to an MS specialist nurse who told me about charities like the MS Society and ShiftMS. Near to where I live there is also an MS therapy centre; it’s good to know that’s there.
My MS started aggressively, and subsequently I was diagnosed with rapidly evolving severe relapsing-remitting MS.
I’ve been pragmatic – worrying about it wasn’t going to help me, and unless I’m in the middle of a relapse I suck it up as the hangover symptoms. But I didn’t comprehend the life-long-ness of it til recently when my first child was born. Ultimately I am managing with the symptoms, but in 15 years it might be the reason I can’t look after my household.
In broad brush strokes MS hasn’t affected my life, but in the detail it has – my football and squash aren’t as good as they once were. I am a lecturer and I also film weddings; fine motor control for the camera work is tricky, relapse has impacted my hands.
Our first child was born last year. My wife bears the brunt where getting up in the night is concerned – I’m useless without a good night’s sleep. Full credit to my wife who puts up with me.
Previously I have had Rebif and Avonex. With the Rebif I got a lot of flu-like symptoms. The injectable pen for the Avonex is definitely better. I recently began Lemtrada and went to hospital for 5 days for the treatment.
I hadn’t heard of Lemtrada until it was mentioned last year how effective it could be, and cost effective too compared with Avonex. If it will be saving money for the rest of my life, it would good to have that offered a bit earlier.
My latest relapse was last year. My mobility was inhibited but I could still walk. On the whole it is well handled – my MS nurse is always my first port of call. If I email her about a potential relapse she replies quickly, even at the weekend – and I can see her generally on short notice and she will forward me to my consultant. Last year she referred me back to the consultant once I had had another relapse in the space of 12 months. By the time I saw the consultant I’d had three relapses.
I see the consultant once a year, but the nurse is the touchy-feely front-end. I see her once every six months – and she decides whether to allocate a relapse to new symptoms, provides me with training for medications, shows me how to inject and so on. I would always go to the nurse about anything related to my MS, not my GP, apart from if I wanted steroids.
I’ve never seen the same GP twice and I don’t feel they are clued up on the MS. Anything MS related I would bypass them all together and go to the nurse. I suppose it’s why the nurse is there, provided they have the capacity to see me.
The treatment plan is well-coordinated in Cornwall; it is a good service I think. It’s really disappointing to think that other people may not have such good care; not only do they have the issue of having MS, but trouble accessing services. That sounds really awful.
Posted in: Patient's experience