25 years

2

I mentioned in a comment yesterday that MS is unrecognisable to what it was 25 years ago. It is all about early diagnosis and early effective treatment; if you miss out on these it is not good news. In response, a commentator said “what it really was 25 years ago … and what you remember are going to be different” and “if someone has PPMS …. it’s not”

This commentator is wrong on both accounts.

When I started my training as an MSologist working for W. Ian McDonald at Queen Square I recall us having to see MSers with very severe and disabling relapses on a weekly basis. We always had one or two MSers on the wards; admitted to hospital to manage severe relapses, pressure sores, fractures and severe contractures. This rarely happens now. The only patients with relapses that get admitted tend to be patients coming via A&E with their first attack, i.e. their initial presentation. DMTs don’t only reduce relapses they reduce the severity of attacks. I estimate that the use of high-dose steroids to treat relapses has dropped off by over 80%. Most of our RRMSers are being treated to target and are NEDA and relatively stable. We know that prognosis for relapse-onset MS has changed. With DMTs, in particular, high-efficacy DMTs, we have revolutionised the outcome for people with the disease; fewer relapses, milder relapses, less disability, fewer people with SPMS, improved survival, better symptomatic treatments, etc. 

What about PPMS? Firstly, the proportion of people being diagnosed with PPMS has fallen from about 15% of the new, or incident, cases to 5%. Why? This is because neurologists don’t label people as having PPMS so that they can offer them treatment. Even those with a diagnosis of PPMS are being treated in most countries, with either licensed DMTs or off-label treatments such as rituximab. At Barts-MS we have a cohort of our PPMSers on rituximab and an increasing number with active PPMS on off-label cladribine. I also have quite a large number of PPMSers who I still follow who I treated with mitoxantrone. We are also offering an increasing number of PPMSers HSCT. In fact, I saw one of my patients with PPMS, who had HSCT in February this year, in clinic last week. She seems to have done well; i.e. she is stable and says her fatigue levels are much better. And finally, we have ocrelizumab licensed and available to treat early, active, PPMS. Ocrelizumab delays the need for a wheelchair by about 5 years and maintains arm and hand function by about 9 years. Is this not an improvement on what was available 25 years ago? In addition, there is a lot of activity in terms of PPMS trials. We are about to start ORATORIO-HAND, the second ocrelizumab in PPMS trial, and I am aware of at least three other PPMS trials in development. 

Despite the advances in the treatment of PPMS mentioned above we have done many other things. For example, we have improved the recognition and diagnosis of the condition. Also, the symptomatic treatments for PPMS have improved. There are newer antispastic agents (Sativex, intrathecal baclofen, gabapentin), drugs and devices to improve walking (fampridine, functional electric stimulators, botox, better splints), better drugs and devices for bladder and bowel dysfunction, better drugs for pain, better drugs for osteopaenia, and this list goes on. We are improving outcomes by managing MS holistically and this is why the life-expectancy of PPMSers has improved substantially and is now only 3-4 years below what is expected for the general population; 25 years ago life expectancy was about 8 years lower.

So this commentator, who is clearly a cynic, should think a little more deeply and look at the facts before commentating.

Maybe the following quote from Bill Gates’ is apt: “we always overestimate the change that will occur in the next two years and underestimate the change that will occur in the next ten. Don’t let yourself be lulled into inaction”.

So if you have been diagnosed with PPMS in the last few years your outcome is so much better than it was 25 years ago and will continue to improve over the next 25 years. Please remember that innovation is relentless, even if you have PPMS, so never give up hope!

CoI: multiple

About the author

Gavin

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

37 comments

  • Well based on the treatment of my PPMS I might as well have had it 25 years ago. I was diagnosed 4 years ago. My local neurologist referred me to the MS specialists at XXXXXX XXXXXX who confirmed the diagnosis then said there was nothing they could do for me, passed management to my local neurologist who is a nice man but not a MS specialist. I’ve gone from working full time in the NHS to medically retired. I need a wheelchair for outside, walking indoors by grabbing onto things. I attend yearly neurologist review where he confirms what I already know – that I’m getting worst. How can I get my hands on some treatment?

    • Ocrelizumab has now been approved in UK for PPMS, you now may be eligible for this, I am also aware of planned trials but not sure of the inclusion exclusion criteria (p.s. I redacted location to inprove anoymity of yourself and your treaters)

  • Well Prof G – ‘hope’ is what we want to hear and positivity, even though it doesn’t always go according to the research, books, and trials. If we hear ‘hope’ in any shape or form – I know from my own personal perspective, that it inspires me to go ahead and fight for treatments and knowledge obtained from information shared. We want to feel better, we want to be cared for, not forgotten when diagnosed and put on a long-term plan of care, that we feel will support us and see us through to old age. In a graceful and respectful way. God bless & here’s to ‘hope’ and trials for curing this dreadful disease.

  • Prof G.

    Thanks for this. I’ve no doubt there has been substantial progress in the last 25 years. My aunt died of MS in her early 50s in the early 1990s. I’m 55 and am doing very well thanks to Alemtuzumab (15 years ago).

    I think there’s a difference of view from the population level (your view) and individuals who have accumulated / are accumulating disability. I suspect there are also variations in access (to treatment, physiotherapists….). There’s probably also a difference depending on which neuro you see (MS specialist or generalist).

    The big breakthrough will be treatments to STOP progression / accumulation of disability. You can build from a point when the disease is stopped in its tracks. Living with accumulating disability / progression can be psychologicallly crushing.

    Good luck

    • This is the fly in the ointment. I was diagnosed in 95 with RRMS buut that changed to SPMS in 2000. Now medically retired and aged 65. Have i too missed the boat, yes. I do feel bitter Looking back I definitely have had MS for 45 years but also no reason to be personally optimistic of any treatment to improve my quality of life. Also I know that I am not alone.

  • I do feel a disconnect with what you’re saying.

    Because you, perhaps understandably, judge the situation based on the lucky percentage of people with MS who get to see you.

    I don’t think you can believe that people exist who can’t access that.

    I developed MS more than 25 years ago. I then struggled through the hell of it for over 25 years with no treatment at all for the MS, no correct diagnosis, and very few treatments for the symptoms.

    So it continued to develop and deteriorate. I was severely disabled for all of that time. Bed bound for a great deal of it. Blind for parts of it. With overwhelming fatigue and pain for all of it. Incontinent. And I haven’t been able to feel my feet for over 15 years.

    Nothing changed for me. No advancements mattered. My life has been exactly the same as if I lived in medieval times.

    Because the NHS didn’t believe me. Dozens and dozens of medical professionals, over decades, didn’t believe me.

    I would never have been diagnosed by the NHS. There are no new symptoms for me to develop, I’ve had basically every symptom of MS the entire time.

    I was not allowed to see a neurologist. I was told there was ‘no clinical reason’ to let me see a neurologist. I was told it was too expensive. I never had a single neurological test.

    I only get to say this to you now, because in 2017 I gave up on the NHS, went private, and was diagnosed with MS within a few months. I wasn’t hard to diagnose, every test was positive. Google diagnoses my MS within seconds.

    I could very very easily have died without a diagnosis. I should have. So how many people out there still do? They get forgotten in this.

    I was never hospitalised and never given steroids, because no one believed me, not because of DMT’s I never had access to.

    If I didn’t have an autistic ability to research, and hadn’t worked for years on my credit score and managed to get a credit card with a £9000 credit limit, I still wouldn’t have a diagnosis.

    I have no idea what percentage of people with MS never manage to get a diagnosis. No one knows. But I can tell you, we are out here.

    I have found that no one cares what happened to me, and everyone rationalises it.

    Even a neurologist, who has read my accounts of what happened, said that I must have had a relapse which led to my eventual diagnosis.

    No, the NHS never cared about my relapses. I got my diagnosis because I was doing a bit better and I diagnosed myself and paid for it.

    And even that was hard. No GP ever gave me an NHS referral. Several refused to give me a private referral. But I managed to get one in the end from a GP who wouldn’t give me an NHS referral, but gave me a private one because it was free for the NHS.

    Another doctor said that MS diagnoses are hard and can take years. That is not what happened to me. We’re talking about decades. And it was very easy to diagnose.

    Even a person with MS said that I must not have had any symptoms after the initial attack. Because they couldn’t imagine not being believed by the NHS and not being referred to a neurologist.

    I’ve never experienced a time without severe symptoms.

    I said, ‘The NHS was very determined to not help me.’ Another person with MS thought they misheard. They asked, ‘The NHS was determined to help you?’

    ‘No’, I answered, ‘the NHS were determined to NOT help me.’

    And a few people have said to me that their MS took a long time to diagnose. I ask for long, and usually it’s a matter of months, one person did say 2 years and that diagnosis was 20 years ago.

    I don’t say anything, but I’m thinking, ‘You’ve got to be kidding me. I totally get that it felt like a long time, but you have no idea what can happen. And I’m glad you don’t.’

    As for why I had the experience I did… Class, age, lack of formal education, poverty, bad family environment, Yorkshire, undiagnosed autism, a traumatic life, take your pick. A mixture of them all, I imagine.

    I have no doubt that what happened to me is happening to other people right now.

    I’ve been reading about Jacqueline du Pré. It’s a tragic story and I have nothing but sympathy for her. But what strikes me is that she developed MS before I was even born, was diagnosed within 2 years, and then dead of it at 42.

    If someone could developed MS and get a quick diagnosis before I was even born, then I certainly could have. So what’s the difference? The difference is that people cared very much about Jacqueline du Pré, who was very successful. Whereas I got chucked on the rubbish heap by the NHS.

    So, when talking about the massive changes that have happened in the last 25 years for people with MS, please remember that is only for SOME PEOPLE with MS.

    For people like me, who didn’t matter, nothing has changed in the last thousand years.

    And even now, having bought and paid for my diagnosis with nothing but opposition from the NHS, I can’t get Lemtrada or HSCT and am stuck on beta interferon.

    As for Sativex and Fampridine, I’ve been told I can have them prescribed, but only if I can pay about 3 grand every year for each of them.

    A lot of references are made on this blog to resource poor countries, with no apparent awareness of the fact that there are people living in Britain, such as myself, that had the exact same experience as someone living in the poorest countries.

    I went through the same struggle to get an autism diagnosis. I was right about that too. And again, the NHS wouldn’t refer me. And again, I paid for it. I couldn’t even get a private referral for an autism assessment, and I managed to do that with no referral at all. I’m on benefits but I spent over a grand on it and it was worth every penny. Despite what the NHS thinks, I’m worth that. And the NHS has now accepted my diagnosis in writing.

    I’m now on Hull’s Autism Board for Hull City Council, and when people at the meetings say things like, ‘Everyone can now get an autism referral’, I say ‘No, you cannot know that, I couldn’t get one. All you can know about is the people who get as far as you. You never know the rest of us even exist. You are assuming that that NHS is a benevolent body and anyone who needs a referral will be given one. That is not true.’ And I get told, ‘This isn’t about you.’ But I’m not talking about me, I’m advocating for the people still going through what I did.

    And I’m doing that here. Please remember the massive inequalities out there and that while it is possible I’m unique, it’s more likely that right now there are people with MS being brainwashed by the NHS into believing that they’re just mentally ill with unhealthy ‘illness beliefs’, that it’s all their fault, all in their heads, and if they just try harder it will all go away.

    I thought, given that it’s the NHS’s fault I haven’t been on DMT’s and haven’t got a record of MRI results until I went private, they might give me access to better treatments. But so far, no. And, honestly, I don’t think I can keep up this constant battle against both the MS and against the system.

  • This is hopeful. Now do SPMS and people who were otherwise diagnosed with significant atrophy already present.

  • I recall visiting my mother on the neurology ward in approximately 1985. That ward was a hopeless place, people in beds slapping around like fish out of water. I remember my mother telling me that the lady in the bed across from her – Her husband had abandoned her. Weird memories, terrible lack of hope. Like a black hole for hope.

    Now with my MS, I get an infusion every six months. MS has become such a small part of my life that I only get time to read the blog on a quiet day. (Most people took today off along with yesterday).

    And on one office visit the VEP machine was an old BBC micro, they couldn’t get it to work. Looked at me odd when I offered to troubleshoot it. Bet I could have fixed it.

    • No enjoyment in reading
      have to enlarge screen to 170% then header and footer are so large it takes over 60% of screen only have 3 lines of text to read at a time

  • I have just been in the Lovely city of Bath for the MS frontiers 2019 meeting run by the MS Society.

    I had a chat with a friend from the MS brain bank and they were saying that they are not getting the brains of young people full of lesions like they use to get. I believe this is yet another sign of the effect of treatments for MS (Please continue to donate your brains they are invaluble resource for researhcers) but it is good to see that people are not dying with brains of cauliflowers by not being treated.

    What was the most positive thing from the meeting…for me it was the debate where people were asked if disease should be treated with a combination of immunotherapy AND neuroprotectives and I was encourged by the overwhelming view that combinations were the way forward.

    I hope the MS Socieities listen to this view and push for combination treatments and stop with monotherapies. This is streetlight science and the easy way to do studies. It is not based on biology. There was a view that anti-inflammatories will be the standard of care and that they are willing to put neuroprotectives on top. I think they should start now and insist that immunotherapy is on the bottom…..It’s biology

    I really wish that DrK would get a donor to support an extra arm of #ChariotMS of immunomodulatory + neuroprotective as it is such a great opportunity to move forward (I apologise to him for saying this as I know it would be extra work)

    Yesterday I did an infoburst with a submessage to make the case for combinational treatments 40 slides in 20 minutes a record even for me. Sadly I ditched 8 slides to try keep to time..If we continue to do the monotherapy approach I will be long gone before real progress is made.

    I say go on…. stone a few birds
    (https://dictionary.cambridge.org/dictionary/english/kill-two-birds-with-one-stone)

  • Thank you for this post.

    Everyone of those of us with MS here in the UK, have some bad NHS experiences we can recount, and we have our current loses and those to come. We also have to live with our ongoing fears. Some have a particularly appalling time of it – experience of MS is obviously as individual as we are.

    Yours being a broad spectrum, long term experience and knowledge based view, is of such value.
    I’ve found it uplifting and like Jane, it’s providing added impetus to my being proactive in the face of this disease.

  • Thank you very much for all that you do for the MS community around the world. OK, so we have electronic nerve stimulators, and muscle relaxants such as Tizanidine and Baclofen and 7 Tesla MRIs, that the vast majority of us will never be able to access in our life times of course…. and finally Ocrevus, which is only very MARGINALLY effective at best for PPMS, how does any of this translate to an improved quality of life for progressive MS long term????? I have a Bioness and it has been great, however, that lies within the domain of biomedical engineering NOT the field of neuroscience or neurology per se. Sorry, but I totally agree with the original poster’s opinion. As someone who has lived with PPMS for a number of years and sees my function continue to deteriorate, we are alone in this fight and totally on our own. The reason that you see an improvement in “treatment,” a term being used very loosely, is that you are not actually living with PPMS or SPMS, but are on the OTHER side of the fence. Am online daily with fellow PPMS patients from around the world and yes, the VAST majority of us feel the exact same way…..NOTHING in our life times except death. If you are NOT LIVING with this, you cannot remotely understand and we do not expect you to. You are not losing function and QOL every second of every day, to this extremely cruel disease.

  • “Ocrelizumab delays the need for a wheelchair by about 5 years and maintains arm and hand function by about 9 years. Is this not an improvement on what was available 25 years ago? ”

    Of course it’s an improvement.
    But I look at the people/patients/victims not a graph.
    I am not so detached to see it.
    You have live at 10,000 ft. to see that.

    Instead I see a person on Ocrevus will lose all leg..arm..and hand function.
    And I think some spms and ppms have very slow progression…but
    eventually all will be unable to walk..write..feed..bathe.. themself.

    And at that point the axons will be destroyed and there will be nothing left to
    remyelinate when those therapies become available. Unless you have hope for
    some kind of axonal..stemcell procedure maybe in 2100.

  • I have ppms it is difficult to know how to determine when and if I should be asking my neurologist for any treatments I feel it’s such a lottery but I will ask. I can’t help wondering if like cancer care we could perhaps have centres of excellence that could at least give opinions on care and perhaps offer advice on treatments. This would perhaps address the differences that there appears to be in treatments/care of people with ms

  • I know of very few people with PPMS, even those recently diagnosed who embraced all the new drugs: Ocrevus; Lemtrada; Rituxan, who have had any slow down in progression, let alone reversal of progression. It seems that unless you have active lesions there is still not much out there for you. There is certainly nothing hope-inspiring for SPMS. I know. I’ve done all of them. I do hope there will be some truly effective neuro-protective agents to join the anti-inflammatory agents for RRMS. 20-30 years down the road, longitudinal studies will clarify the impact these drugs had on the transition to SPMS. I will be long gone by then. It does frustrate me that so many doctors’ heels are still digging into the stronger Immunosuppressives/Immunomodulary agents paradigm. It’s long past time for a cure and research to treat the cause of the disease.

    • Agreed no one really seems to be looking for the root cause of this disease . Sadly, lthough it goes against my personal religious beliefs, just from daily living with the continue accrued losses from MS, I have come to understand the belief in assisted suicide.. That negative comments aside however, please go on Facebook and Google the MS gym. Trevor actually does give me some amount of Hope in helping us via exercise. Since he himself lives with chronic lyme disease and his wife had an aneurysm and had to relearn how to walk again, he understands things in a way most Physicians never, never, never, never will. I’ve never once had a neurologist even an MS subspecialist, refer me to physical therapy unless I asked. I do believe exercise has helped many, along with probably medical marijuana for that matter, although I have never tried that. I think that HSCT, although it does not work for everyone who has a progressive form of MS, will work for approximately 70% of Progressive patients. Since I live in the United States, I cannot access it and I do not have the money to go overseas and get it. Although we all realize research has to be done, the slow pace at which it moves along is beyond frustrating, when we are watching ourselves go down the toilet day by day, week by week, month by month, year by year. Do check out the MS gym, however.
      Even if you cannot afford to join, and many of us cannot, Trevor provides a lot of information for free. You can access it through Facebook and even just by receiving emails directly all around the world. I also tried a number of treatments including pulsed steroids, mitoxantone, gilenya, Copaxone Etc despite having primary progressive MS. Now I’m on ocrevus, but I continue to progress albeit gradually. I am also taking high-dose biotin. I have not exercised religiously everyday Beyond a little bit of white physical therapy. I need to begin to do that in an effort to preserve and possibly even improve functional ability to any degree possible at this point. It is truly a horrible disease. I loved the comment above about how difficult it is and how psychologically crushing it is to watch ourselves become more and more and more paralyzed. It is why multiple sclerosis used to be called creeping paralysis a much better name.

    • As someone with PPMS, I wholeheartedly agree with this comment.

      I’m very disappointed with this post, Prof. G. Just more promotion of immune system destruction, which will only slow deterioration in those with active disease.

      False hope is worse than none at all.

  • This post would be almost the same written in 1996 when Copaxone was released and in 2006 when Tysabri was released. Only 13 years have passed since with no real evolution and our perception of MS has not evolved either: MS is a demyelinating disease that needs immune suppression. Both wrong.

    • Agree. The attacks are not the disease. They are the immune systems response to the disease. It’s great that we can now stop this response, but this is a downstream event.

    • You call me a cynic…predictable ..along w/talking about relapses…spare us the old/man neuro stories..
      Come on. It’s not relapses it’s the stuff that happens between relapses that disables people nowadays.
      It’s 2019..it’s MS were not talking ALS or PSP..still nothing for progressive that actually works. Admit it.
      Well your readers have spoken loud’n/clear…and they’re all much more with the cynic than you.

      “When I started my training as an MSologist working for W. Ian McDonald at Queen Square I recall us having to see MSers with very severe and disabling relapses on a weekly basis. We always had one or two MSers on the wards; admitted to hospital to manage severe relapses, ”

      “If you are NOT LIVING with this, you cannot remotely understand and we do not expect you to. You are not losing function and QOL every second of every day, to this extremely cruel disease.”

      “This post would be almost the same written in 1996 when Copaxone was released and in 2006 when Tysabri was released. Only 13 years have passed since with no real evolution and our perception of MS has not evolved either: ”

      “I know of very few people with PPMS, even those recently diagnosed who embraced all the new drugs: Ocrevus; Lemtrada; Rituxan, who have had any slow down in progression, let alone reversal of progression. It seems that unless you have active lesions there is still not much out there for you. There is certainly nothing hope-inspiring for SPMS. I know. I’ve done all of them.”

      “Sadly, lthough it goes against my personal religious beliefs, just from daily living with the continue accrued losses from MS, I have come to understand the belief in assisted suicide..”

      “I thought, given that it’s the NHS’s fault I haven’t been on DMT’s and haven’t got a record of MRI results until I went private, they might give me access to better treatments. But so far, no. And, honestly, I don’t think I can keep up this constant battle against both the MS and against the system.”

      “I have ppms for 11 years, nothing…. since 2008. I quid the medcal and the medical quid me…”

      • slow done in progression…How is this measured? If you are worseing it is hard to know if it is fast or slow I guess it would be a good question to ask the people in the oratorio trial this question where a change in slope could be seen.

        • “good question to ask the people in the oratorio trial this question where a change in slope could be seen.’

          Woman in the original…ocrevus ny times article said it
          was like going from the bullet train to the local train.

  • Neurologists have been very slow to be proactive about treating MS. They seem happy to wait for disability to develop and watch their patients suffer. They need to listen to their patients and not dismiss symptoms which are a relapse. This is a frequent problem in MS and needs addressing. Overall neurologists have a long way to go and still lag way behind other specialities. I hope things improve in the future for the sake of all MS patients as they are still not great.

  • Hi! Thanks for your post! Im a recent diagnosed RRMS patient and I love to read about research (unfortunately I had to change the subject on which I used to read), but Im pleased to say that, after a year of reading, I have a lot of hope in the future of the treatmetnt of this fu***ng illness. So thanks for trying to make a difference, been updated and trust in a better future for us

  • I’m actually annoyed by this post. As someone with PPMS. You can’t seem to make your mind up. One day you talk of those that continue worsening despite sledgehammer X, Y or Z, and it’s all about a virus in the brain and Epstein Barr, then it’s back to promoting X, Y and Z.

    Is this another post to help keep the funds flowing? COI is a major influence here I suspect.

  • You are promoting a fantasy that PPMS is sorted out now, thanks to Ocrelizumab and redefinition of PPMS as just MS.

    No, it is not sorted! The drugs and HSCT you promote work for *active* disease. Progression is poorly understood and you are presenting nothing new. Just advocating the same old stuff, stronger, earlier. I suppose it distracts from the failure to develop neuroprotectives or remyelinating therapies.

    • I don’t think anyone is making the claim that PPMS is any way sorted out, merely that treatment options where previously there were none are coming onstream. I share your frustration regarding neuroprotectants, having researched intensively in this area for longer than I care to remember and identifying several promising candidates we are as yet no further forward. The fault doesn’t lie with researchers.

      • I do not have active PPMS, MRI scans have never shown signs of activity. I was diagnosed 4 years ago I was working full time. Now I need a wheelchair and furniture walk indoors. I suspect there are significant numbers who do not have active PPMS. Whilst Gavin and yourself feel things have come along way in terms of treatments for MS, before everyone starts patting themselves on the back, just think of people with PPMS with no activity. What are you doing for them? Do you know how it feels when you eat healthily, try to exercise as best you can and try to be optimistic and positive and yet you get worse and worse, and your neurologist says there is nothing they can do. It’s akin to slowly drowning. You see your neurologist approaching the shore but all he/she does is get out his clipboard and shouts back “yes you are drowning” as you slowly go under the waves. What do you suggest I do if you were in my position?

      • “The fault doesn’t lie with researchers.”

        I can well believe that MD2. Thank you for all your work.

        (Also thanks for the tip regarding reduced salt Marmite before. Delicious, I’m addicted again.)

By Gavin

Translate

Categories

Recent Posts

Recent Comments

Archives