Last reply 11 months ago
Hello – newly diagnosed – finally!!

Hello all, I’ve just joined Shift MS. I’m not one for social media, but I like what I’ve seen on this site – level headed objective advice and support with a human touch.

I’ve had MS for at least ten years, had my first confirmed (MRI) demyelination in 2011. Since then I’m sure I’ve had at least half a dozen relapses, but never confirmed on repeat MRI scans.

October 2017 I again had new symptoms lasting a couple of weeks and again saw a neurologist. I expected once again to be referred for an MRI and then be told no new lesions.

To my surprise the neurologist confirmed instantly (from clinical examination) a new relapse and therefore MS.

I had an MRI scan and was referred to Addenbrookes. I am set to commence Lemtrada in mid February.

Even though I know I’ve had MS for years, it’s always a shock when your Neurologist confirms it. I got quite tearful in the clinic.

One thing that I do find upsetting- my mobility has significantly declined over the past year, I can still work my full time job, but it is a struggle with my legs. Had I have been diagnosed earlier and started treatment, I feel that I might not be in this position.

In fact Addenbrookes have reinforced that the Lemtrada will give me the best chance of protecting my brain which is largely unaffected. However as there are now several significant lesions on my spinal cord they do not know if Lemtrada will have any impact on slowing the progression of my mobility.

I am aware that there is a strict criteria for diagnosing MS, and that many people who are ? MS turn out not to be. However I’ve had no doubt about my diagnosis and now feel that any chance of nipping this in the bud are deminished as it’s been left so long.

There is a multitude of information on Lemtrada, some gives me hope, some is downright scary – but all the information is helpful and appreciated.

Thank you Shift MS for this website and wealth of information. I’ll be sure to pop on from time to time.

Who knows , there might even be great strides in remylination treatment in the next decade.

Kind regards


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11 months ago

Hi @faultymike, big welcome! I’ve been diagnosed less than a year and put on DMD straightaway. BUT, I will never know if it was the right drug for me, if it has the best chance compared with others or even how well it is or isn’t working. That’s the thing about our affliction; there are no rules, and we all have our unique stories and journeys. So, you’re in great company here, but don’t worry to much about what might have been. You’re right about remyelination, I think it is showing great signs of promise and is already through the second stage of clinical trials in Cambridge. You, me, all the others, fingers crossed for the next decade x

11 months ago

Hi Vixen

Thanks for your reply. Hope your DMD works well for you. You’re right, no point in dwelling on ‘what if’s’. MS and its treatment is a big learning curve for patients and specialists alike. The hopeful side is who knows what the future will show.

This is the start of an interesting journey.

11 months ago

Hi faultymike,

I’m new to this site myself and only got officially diagnosed in July this year, though my neuro thinks could have been showing symptoms since 2003.

It’s all a bit of roller-coaster but hopefully things will settle down with the right medication.

I really hope that they find something that will help with your mobility. Let us know how it goes for you?

All the best,


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