Treating MS in the UK

Everyday living
1

Hi there,

I was diagnosed with MS five years ago and I’m curious about other people’s experiences with treatment in the UK.

I have some experience with the Polish healthcare system regarding MS, and a few aspects of my treatment here in the UK concern me. Although I currently receive my care in the UK, I have to admit I’m not very happy with how things have been handled.

  1. Relapses – I still don’t understand why steroids are not routinely offered during an MS relapse. I recently had a relapse and was not offered any treatment. I had to request a medication change myself; otherwise, I would have remained on an ineffective therapy. In Poland, during a relapse, you can go to A&E, have an MRI performed promptly, and receive intravenous steroids if needed. I did it once while I was being diagnosed and it helped my double vision.

  2. MRI Scans – All of my MRI scans in the UK have been done without contrast. My neurologist in Poland suggested that contrast is important for detecting active inflammation, so this has made me question how useful those scans are…

  3. Appointments – I only see my doctor once a year. Even when I experienced a relapse, I was unable to secure an appointment.

I would really appreciate hearing about other people’s experiences with MS treatment in the UK.

eAll the best,

Z

2

Hello, I can comment about items 1 and 3 but it’s been an ongoing time since I have had an MRI. For the other points every time I have had a relapse I have been given steroids. For point 3 I do have an annual appointment if I have a relapse then I call the nurse and then see the Dr and the nurse. Maybe there are other reason

thanks

James

3

Hi James,

Thank you for your reply - do you get your treatment in London?

Have you been given steroids in infusions? I would really appreciate your reply.

Thanks,

Zuzanna

4
  1. 1.In the UK they only offer Steroids if the relapse is affecting you in certain ways and its aggressive enough. Steroids are limited, usually to no more that 3 times in a rolling 1 year period. Thats due to increased risk of side effects that include osteoporosis that can affect your bones. If you have Steroids everytime, even when relapse isn’t that bad, what happens when you have used them 3 times and you have multiple nasty relapses?

I once had steroids 4 times in a single year, MS being very aggresive. The 4th set of steriods was only authorised because the relapse was affecting my vision, completely lost sight in my left eye.

Bottomline is if you can manage and the relapse is not affecting you in a way that limits your day to day activities or puts you in danger they likely won’t be offered as the side effects off using them too much could be worse than not using them.

  1. Contrast is only use if they suspect activity as it makes it easier to see. Being done without contrast makes it easier to see damage left over. That means it’s easier to compare none activity over time if MRI is done without contrast.

  2. I only see my Neurologist once a year, though a few times this has been a phone app. There was a time I would also see a MS Nurse in between the Neurologist apps, 6 months. That was due to the treatment I was on at the time but has now gone back to Neurologist once a year. The Ms Nurses will be your main contact between apps and they’ll discuss things without your Neurologist during that time. Your Neurologist may decide on another Mri or treatments to consider and it’ll be the Ms Nurses that will discuss those with you.

5

Hi,

Thank you for your reply - I really appreciate it.

I understand your concerns about side effects. However, my neurologist in the UK repeatedly told me that I was not experiencing a relapse, even though it is possible to have a relapse without new lesions appearing on an MRI. When I consulted my neurologist in Poland, they were surprised that I had not been offered steroid treatment straight away, you should act very fast in order for them to work. I was offered no help to manage my symptoms that kept developing. They literally did nothing.

From my personal experience, access to steroid infusions through the NHS is quite limited. I was told this was due to potential risks and side effects, yet oral steroids are sometimes prescribed for home use without monitoring, which feels inconsistent to me. They say it is not safe but you can take it alone at home… At the moment, I am left with a numb foot that is affecting my walking, and I find the lack of support very difficult.

When speaking with doctors in Poland, I sensed genuine surprise at the differences in treatment approaches. This is, of course, only my personal perspective, having received care in both countries.

Regarding contrast-enhanced MRI scans, my neurologist in Poland explained that contrast can be important for detecting active inflammation and assessing disease activity. Without contrast, it may be harder to determine which lesions are currently active and are causing symptoms. This is obviously cheaper to do MRI without contrast and takes only 10min, that is the reason why NHS only offers that. I realise that practices and guidelines differ between healthcare systems, but this difference stood out to me.

I want to emphasise that I am not trying to complain or discourage anyone. I am simply sharing my experience and concerns about what I perceive as gaps in treatment, access to specialists, and consistency of care. I wish you all the best!

Thanks, Zuzanna

Best regards,

6

Long term side effects have no difference whether you get Oral Steroids or Steroids via infusion. You are not being monitored because you are given Steroids via infusion at a hospital. you are monitored because you are getting treatment via an IV at a hospital. They’d do the exac t same monitoring if you weere getting an IV of fluids without any medical properties. Infusion over oral pills just means they’ll kick in faster than if taken at home orally. Whether you get one or the other just depends. Over the years I’ve had both. Every time I’ve had oral Steroids was because I couldn’t get to the hospital for infusions or it would be difficult so I asked to have them orally, and only after they’ve already offered steroids.

Steroids only speed up recovery they don’t affect how bad a relapse will get. Just because your Neuroloist in another country would do things differently doesn’t change the fact that UK has different ways of doing things. Even if your neurologist here believed you were relapsing, those symptoms would be considered before deciding whether to offer Steroids. As I pointed out there are long term side effects from over using Steroids. We, MS’ers, fall down a lot. Really isn’t a good idea to over use Steroids that can damage and weaken our bones and have them break easier. Maybe thats something your Neurogist in Poland doesn’t view as a concern but here our specialists do.

Unless a relapse is suspected there is no reason to use contrast. Not unless you are going to have 2 Mris 1 with contrast and 1 without. We have routine non contrast Mri so its easier when comparing images to the previous Mri. With contrast thats a lot harder to do. Mri with Contrast dye would make comparisons to previous Mri with or without contrast diffiult to impossible. Which means even if you had 20 little relapses since the last Mri with contrast but weren’t currently relapsing the lastest Mri with contrast wouldn’t show activity nor highlight the 20 lesions you had earlier in the year. Thus a poor record of activity because theyt can’t see lasting damage only active.

One year I had multiple new lesions showing on an Mri compared to the previous year. As far as I was aware I hadn’t relapsed at all that year but a Mri, without contrast, showed I had. Something you wouldn’t see if contrast had been used as contrast only makes it eeasier to see activity.

If you don’t like your current Neurologi here ask for a second opinion. They may or may not agree with your current neurologist.

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I’m really glad that you’ve had a positive experience with NHS treatment. At the same time, I know there are many people, myself included, whose experiences have been quite different. That was my reason for creating this post - to connect with others who may have faced similar challenges and who might be able to share advice or guidance.

When my first symptoms appeared five years ago, I went to my GP and was told that it was likely stress-related and “in my head.” I was sent home without further investigation. I had 100s similar experiences during the diagnostic process. In the end, I was only diagnosed after seeing a neurologist privately in Poland. Without that, I might have spent much longer searching for answers.

More recently, I’ve been dealing with a relapse. Instead of steroids, I was prescribed antidepressants, probably to stop complaining lol! Of course, treatment decisions are complex, but it has been a difficult experience from my perspective.

Regarding steroids, I completely respect that not everyone wishes to take them. I’ve only had them once myself, but they did help relieve my symptoms and I would take them happily again. When I asked about steroid infusions here, I was told that only tablets are offered. Maybe its different in different cities, hospitals I do not know. Personally, I feel uneasy taking high-dose steroids at home without supervision, especially since in Poland I was monitored closely throughout the treatment, which made me feel much more comfortable and supported.

On the topic of contrast MRI, I don’t think it’s useful for us to debate medical details since neither of us is a neurologist. I can only speak from my own experience. When I was being evaluated for what I felt were possible relapse symptoms, contrast was not used, and at that time my main concern was understanding whether there was any active inflammation.

On other opinions, I had quite a few in the UK, including £300 top London professor, unfortunately he did not help me. I will not give up and keep searching for someone who actually cares.

I hope someone who has similar experiences will will join the conversation.

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Hello, I get my treatment near where I live in Chester. I have had tablets and infusions, I am not sure why it differers, recently tablets appear to be the goto. It’s usually quite hard ti get hold of them as I think they are super powerful and they work just as quickly. Obviously the steroid just helps speed things up, I have been told a few times after a while it makes no difference apart from maybe giving me more energy.

Thanks

9

Don’t get me wrong, it wasn’t all that good for me or some of my friends/family or others users here or those I’ve met at the hospital, especially pre-diagnosis. I had years of GPs saying things like its Sciatica, depression, stress and xyz. A few wouldn’t even discuss things if I went in with more than one issue. It was one thing per appointment. On one occasion I tried to book 10 appointments with the same GP I’d just had so they could deal with everything. That wasn’t possible so I’d be booking an appointment as I left to add the next issue. Months and months later I ended up moving and managed to get a GP that took my list of symptoms so she could look at them later when she’d have more time. A few appointments with her later and she referred to a neurologist. A week before that app I had a major relapse and because I mentioned the Neuro referral the following week they arranged for a Neurologist consultant to see me, believe she was Polish, and she arranged for me to have an Mri with and without contrast along with a Lumbar Puncture. The app with the Neurologist then got changed to another Neurologist a few days later. After checking I saw the new Neurologist was an MS specialist which pretty confirmed my theory of MS. I’m sure that had I not been having a major relapse shortly before the Neurologist app my diagnosis could have been even longer.

Steroids don’t relieve symptoms. They are used to speed up recovery, thats it. With or without them the relapse will peak at same point before recovery. The difference is that instead of a relapse taking 2-3 weeks to peak and another 2-3 the heal, well, heal as far as it does, so 4-6 weeks total. Steroids may have it peak in 1-2 weeks and healed in 3-4. That relapse goes from 5-6 weeks to 3-4 with Steroid use. I’m using this time scale as most, not all, but most of my relapses have followed this pattern.

The room where you’d get treatment, IV Steroids, for MS here is tiny. Maybe 6 people but it’s also used for the DMT/DMD for MS along with other conditions. I’d imagine oral Steroids here would be preferable because space is limited. Both do the same thing and as I said monitoring when having an IV is just because you’re at the hospital not because you may or may not react to the steroids. There was a time were I had IV steroids quite a few times but the last time was around 10 years ago. I’ve had Oral Steroids since then and I put it down to the size of the room and more and more people being diagnosed.

I’m not trying to argue, just as someone that’s had MS for over a decade, I’ve got experience with Mris and discussed things like the reason why Contrast dyes do and don’t get used. The same as differences with IV and Oral Steroids. Take that as you will.

As I suggested if you’re not liking you doctor for what ever reason you can request for another doctor. I haven’t done that with mine but I have done that with my Thyroid doctor because the guy was…well something I’d get in trouble saying here.

10

The current orthodoxy in the UK seems to be that the risks of high dose steroids generally outweigh the benefits for all but the most disabling relapses.

I have had RRMS for 25+ years and have only ever had one MRI scan with contrast, so your experience there also matches mine.

I have no recent experience of needing an urgent appointment with the neurologist because natalizumab has kept my MS stable for many years now. Thinking back to the bad old days when I was relapsing often and in trouble a lot, I do not remember it being a problem getting seen, but that was a long time ago. Routine appointments now tend to be annual or thereabouts.

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11

Hi @erzet . Interesting to hear the different approaches some of which might be because there is a real shortage of Neurologists in the UK. To be honest , unless you have a significant amount of symptoms from a relapse , I am not sure there is any point in taking steroids - your brain/ central nervous system will recover by itself - with or without steroids the end result is the same. I was offered steroids after my first real relapse but declined.

I have an annual MRI which this year picked up a new lesion which so far as I am aware has not caused me any new symptoms ( a lot of lesions don’t cause noticeable symptoms). In light of the MRI/ new lesion my neurologist made an appointment for me to discuss future treatment as a result of which I am likely to start on a new Drug ( I’m secondary progressive so there is basically just one possible drug).

The growing thinking in the UK is that MS patients should start with high efficacy drugs from the outset - rather than start with a low efficacy and only change when you get new relapses / lesions ( a bit like shutting the stable door after the horses have bolted)

I’ve never been sure of the purpose of MRI with contrast! It might show that you have an active lesion/ active inflammation but , basically, what difference does that make? Does it make any difference to treatment or the inevitable worsening of MS and symptoms? Like everyone else, my symptoms come and go depending on whether I have a cold, flu, Covid (!) am feeling stressed or , in particular, I’m too hot.

I have 2 regular meeting a year with my MS Nurse to discuss symptoms and their treatment and I can contact her any time.

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