Dear Neuro,
You see me once a year for 15 minutes, you look at my MRI report and blood results, you ask me a lot of questions, you examine me and then you tell me that everything is fine. At my last visit, you said my MS was stable, you mentioned to me that I was NEDA, because I had had no relapses, no new lesions on my MRI and my EDSS was static at 3.0.
I have now looked up and read about NEDA (no evident disease activity) and I disagree with your assessment. I am clearly getting worse. The Christmas before last I remember going for a 5-mile walk with my family after lunch and managed it fine. When I tried the same walk last Christmas I had to turn back after a mile because my right leg was dragging.
I also have other problems that you didn’t pick up on during the consultation. I now have to get up 2 or 3 times at night to pass urine. My memory is much worse than it was last year. My head feels foggy all the time as if I have a permanent mild hangover. I now avoid any social occasions with colleagues after work. The truth is I am too tired to at the end of the day to do anything else than get home. I feel exhausted most of the time. I have stopped gardening.
I think I have developed secondary progressive MS. Do you agree? Would it be possible to see you sooner to discuss this? Is there anything you can do about my deterioration in functioning?
Yours sincerely
Patient Y
Does this story sound familiar?
At first glance, it is easy to say this person has SPMS. But do they?
Based on the definition of SPMS it seems likely, i.e. objective worsening of function for at least 6-12 months independent of relapse activity. Based on the latter it seems Patient Y is not having relapses. As for the objective worsening of function the interpretation is in the eye of the beholder. As far as the neurologist is concerned the patient is not deteriorating because the EDSS is stable. In comparison, the patient has documented, albeit rather crudely, a drop if in functioning. Who do you believe?
The scenario illustrates what will happen when MSers begin to self-monitor and prepare for clinic appointments in advance, i.e. they will potentially be self-diagnosing secondary progressive or worsening MS.
However, I want you to take a step back and ask could the deterioration be due to something else, something reversible? If it is due to something else it may be treatable and potentially reversible.
Does this patient have any reversible comorbidities that could be responsible for the deterioration? Smoking, hypertension, diabetes, metabolic syndrome, obesity, underactive or overactive thyroid function, renal, liver, heart or lung disease? If a woman, is she menopausal? What about mental health issues; depression and anxiety? Is this patient drinking too much alcohol? Is the patient malnourished? They may be eating a diet of toast and tea.
Is this patient sleeping well? Getting-up 2 or 3 times a night to pass urine means their sleep hygiene is very poor. Just improving this patient’s bladder problems will have a major impact on their daytime fatigue and work performance.
What about a chronic infection? Could this patient have a low-grade urinary tract infection? What about their oral health; could they have gingivitis or periodontitis? Sinusitis?
Is this patient exercising enough? I suspect not. The drop off in the walking distance could be deconditioning, i.e. losing fitness because of lack of exercise. In this particular patient, I suspect this, however, is unlikely because deconditioning is unlikely to result in a dragging leg on walking a mile.
What medication is this patient on? Are they are on an anti-spastic medication or anticholinergics for their bladder problems? Both these class of drugs affect cognition and may explain the memory loss and brain fog. I have commented on baclofen being particularly problematic in the past.
How well is patient Y? Patient Y seems to have become socially isolated and withdrawing from having social interactions with their work colleagues. The patient has stopped gardening, which helps improve mental health. What about the home environment? Is patient Y’s relationship with the family stable, etc? What are this patient’s finances like? Are they in debt? Are they struggling economically?
Could this patient have smouldering MS? Does this patient need an MRI of the spine and a lumbar puncture to measure CSF neurofilament levels? We know that brain MRI will not pick-up all disease activity. Does this patient need to start a DMT or have a DMT switched and escalated? I would be very interested to know how this patient’s cognitive function is and whether or not they have a swiss cheese brain (lots of black holes) and brain volume loss. Having this information makes a diagnosis of SPMS and/or smouldering MS more likely.
How old is patient Y? If they are over the age of 50 we may be seeing early ageing.
Making a diagnosis of SPMS is not simple and most neurologists would prefer not to do it. However, if we are to improve the lives of our patients we need to take a holistic approach to the management of MS. Clinical practice must not be a box-ticking exercise. We need to provide our patients with the tools to self-monitor, self-diagnose and self-manage. We need them to become partners on a life-long MS journey that will result in better outcomes and happier and more content MSers and HCPs.
To reiterate the philosophy of marginal gains “if you break down everything we can think of that goes into improving MS outcomes, and then improving it by 1%, we will get a significant increase when we put them all together”. This case vignette illustrates this very well.
I hope this post motivates you to start self-monitoring and to start preparing for your consultations with your HCP. You need to have a list of questions to ask. Don’t let your neurologist or HCP fob you off. You know yourself better than they do; please don’t forget this.
CoI: multiple
Doesn’t everyone take a list to their consultations? I’’m surprised.
Great post !
When we go from RRMS to SPMS, what changes in treatment?
From the point of view of HCP’S, when progressing to SPMS what are the benefits to the pwMS?
Wouldn’t a pwMS diagnosed with RRMS have a larger DMT offer ?
If you have followed this blog for sometime you will know that about our campaign of #MS_is_1_not_2_or_3_diseases. RRMS and SPMS are the same disease. What causes relapses is there all the time and modifiable by DMTs. What causes SPMS is there all the time and is not modifiable by DMTs once it the processes that drive SPMS are set in motion. The reason why DMTs delay SPMS is that they limit the priming of the damage and hence slow down the SPMS processes or SPMS.
Sounds very very familiar: I’ve been getting a sense of doom, almost of panic, because of a similar situation
Years of very active paediatric MS, which was eventually controlled by rituximab. Then years of “almost no problems”: active healthy student life (moved out of the paediatric bracket during this time)
Now in the working world after university, and various new things keep coming up, some temporary and some permanent. There’s nothing really dramatic or major, but it is certainly there
Is it because of the change in lifestyle? Is it because the DMT is becoming less effective after so many doses? Is it because of (god-forbid) SPMS?
Biggest question….how to salvage the situation?
BTW re-dosing with rituximab always improves things
“Could this patient have smouldering MS?”
Let’s say yes to that. What is the Neuro’s answer in this case?
“Have you considered praying amd religion? We have nothing else am affraid….but hope is everything in life”
Excuse my ignorance, but what is smouldering MS?
Smouldering MS is MS.
https://multiple-sclerosis-research.org/?s=smouldering+MS
Everybody is ignorant when it comes to smouldering MS. It is disability progression in the absence of clinical or imaging symptoms. Brain volume lodlss is a good prpxy in my uninformed view (but then again, my view is as good as anybody’s at this stage really)
In the figure on the left, you see a pyramid with what is needed on top of anti-inflammatory therapies. This what smouldering MS needs. It needs add-on combination therapies to target the processes that drive smouldering disease.
Re: “Have you considered praying and religion?”
We shouldn’t poo-poo religion. In my experience, religious MSers, particularly those active in their church, do better than those who don’t participate in religious activities. I now know this is due to social capital. Religion gives people a sense of purpose, a sense of belonging and a wider social network. In short, religion makes you more resilient.
I think that is a very measured and thought provoking response
Until you realise it’s bullsh*t and have been living a lie.
I many colleagues who are atheists or agnostics who go to church every week with their families and enjoy it. They don’t go for the religion they go because they want to be with their family and friends. Are they living a lie? I would prefer not to judge them.
I recommend you read this post:
https://multiple-sclerosis-research.org/2018/03/guest-post-alasdair-coles-on-an-instinct-for-kindness/
And watch this YouTube video:
[youtube=https://www.youtube.com/watch?v=7P-NRVyrVcA&w=720&h=405]
You ought to read Richard Dawkin’s The God Delusion.
I wouldn’t be happy seeing a doctor who was comfortable promoting fairy tales to make me feel better.
Exactly …what will the neuro’s reply be
This is such a resonant post for me. I have been in exactly this position with my neuro for years – with the exception that he doesnt do the MRIs or blood tests, just talks to me and sometimes times a 25m walk. (In fairness I did badger him into an MRI this year for the first time since 2012 and as expected it showed no new activity).
It is SO disappointing and depressing to be repeatedly told there is nothing to be done, when, as you clearly make the point, there are a lot of peripheral things to be considered, and there may be small, marginal gains to be made in many areas. A much more thorough review should be every neuro’s starting point at the annual meetings. Having reached EDSS 6.0/6.5 in 12 years of symptoms (7 since dx) I would value anything which would help me stay here as long as possible (or get back down the scale – although that’s unlikely).
Paul can I suggest you take control of your own management. There is plenty you can do without your neurologist’s input.
Thanks Prof G. I do actively take steps to manage my condition. I read as widely as I can and with an open but questioning mind (and can understand some of the material). Amongst other things, I follow the advice in Prof Jelinek’s book on OMS in terms of diet, Vit D, exercise (yoga and swimming mainly) and meditation. I think I am doing pretty much everything on my part I reasonably can to mitigate my MS – and of course have no idea whether any of it actually helps (as I have no control nor am I double-blinded!). But as you say elsewhere faith is a marvellous thing in itself and I do have faith that it helps.
It is quite possible that my expectations of the neurologist treating me are unrealistic and perhaps misdirected – although in my mind he is my first and primary point of contact and everything should flow down from him. But if I feel ignored and written off (which I do) because it seems there is no drug therapy both available and suitable, this just leads to unhelpful frustration. Your points about checking CSF filament levels are not something I can self-manage but have never to my knowledge been considered for me. I very much agree that it should be a holistic approach and that our consultants should be our partners in this ordeal.
I shall certainly use your piece to expand my list of questions for my next consultation but I fear the responses will be similar to previously – nothing relevant, nothing available, nothing in the budget.
But please dont interpret this as just an assault on the neurologist, who I get on well with and who I think is equally frustrated by the lack of options due either to funding restrictions or simply because there really is nothing.
It’s good to hear that someone else is looking after their own health. I did the same although my diet was low fat and I included fish and meat. I worked full time and took regular exercise. The best thing I ever did was swimming. When I was in pain after work I would get into the water and the relief was obvious. Also, I’ve had cancers that required major surgery and I attribute my recovery to my healthy lifestyle. I was diagnosed with MS over 40 years ago, had highly active RRMS ie. three hospitalisations in less than two years, never been on a DMT. Had steroids four times. I’m SPMS now, have a brilliant Neurologist that listens to me.
Prof G,
Many thanks for your thoughtful piece.
I do wonder if you are setting us / our neuros up to fail.
I was diagnosed some 17 years ago with very active RRMS. I was treated with a highly effective therapy. I try to exercise as much as possible, watch my diet, have never smoked, don’t drink alcohol, have no other conditions that need to be treated. I have an annual medical health check, 6 monthly dental checks, annual eye tests. I sleep well. In many way I am the ideal MS patient. However, I have noticed in the last couple of years that my walking is a bit slower (I walk the dog every morning). I’m in my mid 50s
My neuro is lovely and very My annual MRI shows no activity and I have had no relapses since my induction therapy 14 years ago.
I’m guessing that I might have smouldering MS, but what can my poor neuro do about it? Before we go bounding into our neuros offices with a list of demands, the research community / pharma need to provide neuros with the tools to address smouldering MS / the underlying cause/s of MS.
What might you expect my lovely neuro to do for me / offer me in the circumstances described above? If you had a similar patient to me, what could you offer them? As far as I am aware there are no trials for therapies looking to tackle smouldering MS. I’m not going to give my neuro a hard time – she would love to offer me something, but the research world are still to come up when the any neuroprotective, remyelinating, or neuro-restorative treatments.
Re: “I do wonder if you are setting us / our neuros up to fail.”
But we are failing already. I give a talk on ‘The Perfect Storm” about how MS services are currently configured in the NHS. We simply can’t cope. We need to disrupt and change the NHS service model that is based on a Victorian model of healthcare delivery. The reason why we have started the MS Variance Raising the Bar initiative is to just this; to change the way we configure and run our MS services. We are partnering with Shift.ms on one of the workstreams around MSer activation/participation; you are welcome to help.
RE: “…the research community / pharma need to provide neuros with the tools to address smouldering MS / the underlying cause/s of MS.”
We are all working on this. In fact, I am in the process of writing a grant on smouldering MS.
That is a very thoughtful and compassionate post. My situation is quite similar in many respects in terms of the self-management activities and the unremitting slow deterioration despite them (although I never had relapses or active RRMS). I agree that we (or at least I) may have too great expectation of the neurologist treating us.
I think a lot is down to the degree of isolation felt by patient Y. Who actually is on their case? If all s/he can expect in the way of support is the annual fifteen mins neuro appointment, there’s zero chance of making the kind of changes which this person needs to. My experience is that feedback from (e.g.) physios is hugely important. Somebody who can see small improvements, give the mixture of carrot and stick comments to motivate and stimulate the patient to make those changes, persevere with the healthier regime etc. A system where the GP follows up concerns and makes the links to services. I was struck by the comment of a friend yesterday: she is in a bad way with MS (wheelchair, catheter) and has just had the shattering news that she has now got type 2 diabetes, She had a home visit from the diabetes nurse specialist who told her: ‘ We’re going to look after you now’, at which point my friend burst into tears and replied:’ Well, I’ve been ignored for twenty years with my MS’. The nurse apologised and said she knew that neurology services were not what they should be. (I, fortunately, have a very different experience having switched teams). Seems to me that without the right support, we’re pretty much programmed to fail.
RE: “…the research community / pharma need to provide neuros with the tools to address smouldering MS / the underlying cause/s of MS.”
We are all working on this. In fact, I am in the process of writing a grant on smouldering MS.
Re: “Seems to me that without the right support, we’re pretty much programmed to fail.”
One of the reasons I contribute to this blog is to provide support. But I agree with you the variability in MS services being provided in the UK and across the world is quite astonishing, which is why we started the MS Academy and Raising-the-Bar initiative.
Seems obvious to me
Will this patient benefit from siponimod?
What do you think? This patient would have been eligible for the EXPAND trial and was in the EDSS bucket that did the best. The caveat is what happens if this patient was on a high-efficacy DMT already, for example, fingolimod, natalizumab or ocrelizumab would switching patient Y to siponimod help? I don’t have an answer to the latter.
I get up in the night to urinate, sometimes three times, what has made it easier is using a urine bottle with female adapter, I have by my bed. I don’t have to rush now, to make it to the bathroom in time.
I’d love to know where you got this. I didn’t know such a thing existed. I get up 4 times on a good night
NICE POST
Do you listen patients like this?
Don’t let your neurologist or HCP fob you off
Are you that kind of neuro?
I have an excellent GP. She rules out any other diagnosis, if tests are clear then it is pinned on MS. For example a severe short episode of internal/ external tremor followed by exhaustion and weakness for weeks. Also accompanied by visual disturbances, quite concerning as it resulted in some falls. So a trip to optician. MRI of the eye all fine, other causes ruled out finally get to see the neuro months later, later still a scan that reveals no new inflammation and my Ms nurse concluded symptoms are the progressive part of MS . They won’t clasify it as SPMS though and I do not qualify for DMDs, I have exercised to my ability, good diet, good weight, take HRT. Do all the right things, I’m 58, I’ve had the disease long before diagnosis 20 years ago and have lesions galore 2 black holes at least and cord lesions. To me it’s obvious it’s SPMS, I don’t want any more DMDs anyway due to some awful side effects. I’d rather honesty about MY situation than playing cat and mouse with DMDs to see if a “ bright lesion” gets seen on the scan. Damage is done, it’s about living my best life, and thank goodness I have a GP who knows me and rules things out as my neurologist is only interested in whether I fit DMDs or not. It never used to be like this.
I don’t necessarily agree with more advanced MS not being modifiable. We now have evidence to the contrary and that is why we are doing the ORATORIO-HAND and CHARIOT-MS studies to test the hypothesis that anti-inflammatory therapies can slow down the loss of upper limb function that occurs in MSers with more advanced disease.
I’m glad to hear you believe SPMS may be modified in the future. I don’t get that sense of optimism from my MS team. So I will carry on with my own approach of self care. I hope so much if one of my children get diagnosed they will get a DMT immediately. I suspect I was a little late for that bus to make a big difference. My sister diagnosed in late 50s has had no hope of treatment. We both have reduced left hand function. Home physio is vital for this.
Re: how your contribution to the blog offers support – it certainly does and it’s unavailable elsewhere. Seeking out your comments is part of an overall strategy for managing the condition. And the routine of doing that every day likely shows a bit of the resilience you talk about! I also strongly endorse your view on ‘marginal gains’, having made efforts in recent years to get fitter. As they say in the States: ‘the harder I work, the luckier I get’.
“the harder I work , the luckier I get” is what I feel when I’m able to work hard
Most of the time it’s “the luckier I get, the harder I work”
I agree, when you get lucky you can work harder. I try and fit my little exercise routine in first thing in the day. When energy is higher. If I get lucky later in the day I’ll attempt some more! I’ve recently bought an adaptive chair/Trike. Mountain Trike. It had levers to propel and an electric motor. When I get lucky I can use the levers without motor for 15 pushes before a rest 🙂
Does the story sound familiar? Very familiar, leading to a sense of doom and panic
Years of very active paediatric MS, which was eventually controlled by rituximab.
Then years of “almost no problems”: moved out of the paediatric bracket during this time
Now in the working world after university, and various problems keep coming up, some temporary and some permanent. There’s nothing really dramatic or major, but it is certainly there
Is it because of the change in lifestyle? Is it because the DMT is becoming less effective after so many doses? Is it because of SPMS? Is it because of old accumulated damage and all the black holes?
Biggest question….how to salvage the situation?
BTW re-dosing seems to help