Reply To: Recent diagnosis

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1 month ago

Hi @arron_holden

Sorry to hear about your diagnosis, but welcome to the club.

As others have said, ‘will it get any worse?’ is the $64000 question, and I thought I’d share a bit from my recent experience as it’s not a million miles away from where you are.

I’ve got a few years on you – I’m now 58 and was diagnosed in 2017. I’d had a bout of optic neuritis in 2011, and although MS was discussed (as there is some family history – my older brother had PPMS and was unfortunate to be diagnosed long before there was any kind of treatment), it was thought to be unlikely. Ongoing problems with my hip and knee (accompanied by an impressive limp) were investigated and initially thought be related to slipped discs, but that didn’t account for the feelings in my left arm and hand (heaviness and lack of sensitivity)- upshot was, a couple of MRIs later, MS was diagnosed.

Work-wise my situation was different in that I was nudging towards retirement and my diagnosis helped me to take the decision to retire a year or two earlier than planned. So, telling colleagues was slightly different, but I would definitely say be as open as you feel you can be, you will almost certainly be warmed by people’s understanding and compassion (yes, there will be people who want to tell you that their friend’s uncle’s next door neighbour has MS and they seem to be fine, but they’ll be in the minority).

Will you get worse? Unfortunately this tends to be the nature of the beast, but if someone had described when I was diagnosed how I’d be three years later I would certainly have taken it – my walking is worse, stairs are a pain, getting up a ladder to do household jobs is still possible but usually with a support team in place, and I have more of a tendency to be clumsy. Pins and needles in most parts of the body at various times and things likes spasms and cramp are more common, But, I can do most of the things I could do before and I wouldn’t necessarily have expected that to be the case three years ago.

I’ve been on Tecfidera since Jan 2018, and I don’t know if it’s holding things in check or if this is how it would have been anyway. I’m due to see my neuro next month and I’m always open to conversations about other treatments.

You will be told that MS is different for everyone, which is true but very frustrating when your MS nurse / neuro don’t seem to be able to tell you anything useful about how your MS is likely to progress. I was told that you should regard yourself as newly-diagnosed for about 5 years, because it takes that long to understand what your own MS looks like – and I’m beginning to see the truth of that.

If you can (if they’re still running because of COVID), get yourself on a newly-diagnosed day run by your NHS trust – this was brilliantly informative, input from a range of specialists and gave me and MrsT a real insight into what to expect.

Good luck with everything.