I recently saw a patient for a second opinion. She was unable to tolerate dimethyl fumarate (Tecfidera) and has stopped taking her medication about 6 months ago. She was fully functional and apart from mild sensory symptoms, fatigue and intermittent ‘brain fog’ she felt ‘okay’. She was reluctant to start another DMT. She subsequently had an annual MRI that showed at least 4 new lesions with one large lesion that was enhancing in the parietal lobe. Despite being recommended to star on a more active DMT she chose to wait and see what would happen over the next few months. Her diligent MS clinical nurse specialist didn’t like the wait and see attitude and recommended she saw me for a second opinion.
It was clear when the patient came into the room that she was very anxious and rapidly become clear she had not come to terms with having MS. She was clearly in denial and had not accepted having MS. I therefore went back to basics and discussed the emotional reactions and uncertainties that are triggered when someone is diagnosed with MS. I explained that the psychological impact that MS was having on her, and her family, was being underestimated. It was also clear that this young woman had no idea of how to deal with the uncertainty associated with having a disabling disease.
It was clear that this patient left my consulting rooms a little less anxious than when she walked in. What the consultation taught me is that denial is a very strong emotion and unless you tackle it head-on it often impedes rational decision making about MS treatments.
One of my other patients has previously suggested we add an extra A onto DABDA for pwMS, i.e. DABDAA. The extra A is for anxiety; the uncertainty that a comes with a diagnosis of MS about what will happen in the future.
I suspect most pwMS who read this blog are beyond the diagnostic phase and the emotion of denial. If you are not, or if you, your partner or other family members have persistent anxiety, can you please arrange to see your neurologist or MS nurse specialist to discuss things in more detail. There are many treatment option we can offer you to help cope and come to terms with the diagnosis of MS.
Tams et al. Helping families thrive in the face of uncertainty: Strengths based approaches to working with families affected by progressive neurological illness. NeuroRehabilitation. 2016 Mar 23.
BACKGROUND: Management of the uncertainty inherent in a diagnosis of a progressive neurological illness is one of the major adjustment tasks facing those affected and their families. A causal relationship has been demonstrated between perceived illness uncertainty and negative psychological outcomes for individuals with progressive neurological illness. Whilst there is a small and promising intervention literature on the use of a range of individually focused strengths based psychological interventions there appears to be little guidance available how clinicians might help those family members of those affected.
OBJECTIVE: To undertake a systematic review of the evidence on the use of strengths based, family focused interventions that target illness uncertainty.
METHODS: A systematic literature search was undertaken using the National Library for Health abstract database.
RESULTS: Five papers were included in the review, only two of which were published in peer reviewed journals. All five reported on strengths based approaches that could be used with families but only two explicitly identified illness uncertainty as a target. Outcome measures were heterogeneous so data could not be aggregated for meta-analysis. The results suggested that these interventions showed promised but the review highlighted a number of methodological issues which mean that the results must be interpreted with caution.
CONCLUSIONS: There is very little evidence of the use of strengths based approaches to helping families manage the uncertainty associated with progressive neurological illness despite it having been identified as a key target for intervention. The review highlights the need for the development of an intervention framework to address this key clinical issue and suggests one model that might show promise.
The minds of neuros work in a strange way. When someone gets a diagnosis of MS they end up on websites setting out all the things that MS will offer up – increased risk of dementia, wheelchair, job loss, lower life expectancy…. Then neuros like you are surprised when a patient turns up for an appointment and are anxious and in denial! i see on your Twitter account that you hope to still be running at 80. Lucky you. Keep your fingers crossed that you never get a neurological condition.
Agreed, I can't for the life of me identify with people who think that getting their diagnosis is a "relief", when absolutely jack is certain about the disease.
Nice
Its not theirs brain
I trainwrecked on diagnosis and was offered little in the way of comfort since it came in a phone call. My husband had passed months before (glioblastoma). My son was a mess, finances a mess, lost my job caring for him. Was in college to become an RN.When I presented, incontinence, some face drop, depression, optic neuritis, fatigue. The diagnosis trainwrecked me. Doc referred me to another and I was given Wellbutrin. MRI was scheduled as MS was suspect or TIA due to the visible symptoms. MRI, reaction to the contrast dye. Thought I was going to die on the table.Wellbutrin made me spiral worse actually.Point being… Sure news of MS is instant trauma even if a patient does not display it. They may not know what MS is, walk away and then look it up and be hit be trauma.I've met SO many patients who's entry into MS is just a disaster whether DX was old or just months back.Even my most recent "OH MY!" Prof G. That came in a phone call.Entry into MS will have trauma displayed or not at DX. I've said it before, proper entry into MS is foundational towards "Brain Health Time Matters" because, time matters.So… Whats the solution?I'd say quickest, fastest, most effective is a DVD burned at clinic on site.A "doctrine" that is easily converted to other languages.1. What is MS2. What is a DMD3. History of MS4. MS Today (explaining that its manageable for most patients now)5. Resources (Patient associations whatall depending on geo location)6. Contact your provider with questions or to discuss MS which can be fielded into proper entities to discuss disease questions vs clinical.Pretty simple, CERTAINLY better than a phone call or "You have MS, go learn."It needs be stressed that proper entry is imperative in as far as proper entry can be accomplished.Clinical can download the DVD from a website burn copies.I'd say use YouTube but reality is alot of pwMS diagnosed dont engage the online universe if older. But, could do both. Why not!Five, six, perhaps 7 chapters, 15 minutes per. Your crew and others at the cusp of patient centricity in MS hash out what it should be.Pharma probably be happy to help fund this. "Avoid Emotional Trauma, Time Matters"
Agree with you about how traumatic dx can be… I was in my mid 20s… in hindsight I think I experienced PTSD – pretty extreme! I seriously thought I would be dead within a year and nobody explained that was unlikely. The most helpful neuro told me many years later that 'most people manage well' which was helpful Others said things like – 'it must be like having the sword of damocles hanging over you' – I kid you not. I hope things have improved since then but am not sure.
More More…Dont want information randomly found. Person goes home, types in MS, "Oh. MS Society. I'll go there."There is SO much information that it mounts more stress.Needs to be well thought out, deliverable preferably onsite at DX, DVD.I spoke with OhioH about their entry sometime back and its very well thought out. But they do have the assets to "Get er' done. Onsite."SURELY something relatively simple can be delivered at clinical upon entry that is informational, reassuring and provides an initial roadmap to entry done PROPER.Whats proper? Well, you know what needs to be said better than I. A course of action.Proper means: Nice woman provides entry to each chapter of the DVD. Discussion of said chapter proceeds with a male.Why?Because perceptions count. The woman / man thing plays into these emotions.With disease info, a man will carry weight. With symptoms would vary. Listening to a woman about psychological/mental wellness impacts will have more impact than a male.Needs to be WELL thought out informational and presentational.I'd (we'd) be happy in fact DELIGHTED to help in any way we can.
This is also related to wishful thinking and being naïve about MS (I was like this when informed about MS).
To my mind there are 3 basic facts that I have learnt now that I have progressive MS.1) Acceptance of having MS comes in its own good time. Diagnosed in 1995 and acceptance in 2012 when medically retired2) Being anxious is part and parcel of MS, you will aways have it.3) Councellors in my experience do not know anything about the problems of living with a Long Term Codition that includes physical disabilities. I am seeing a counsellor but she knows nothing about MS and the prooblems it brings. I am teaching her about MS and being charged for the priviledge. You identify this problem in the paper at the end of your article.Maybe counsellors need to be better equiped to deal with these sorts of problems.
Some counsellors I question their experience and qualifications. I had counselling once, it was as useful as talking to a wall and watching paint dry. I only had one session and never returned. I did most of the talking and she hardly said anything, no suggestions made by her. It was paid through my work rather than the NHS. I prefer more interactive talking therapy, something productive where I learn strategies to cope in the future such as with high impact CBT, which was very useful (low impact CBT was not useful for me).
I had 2 counsellors who did not really engage with me and on reflection were as much use as a chocolate coffee pot. The current one is much more positive and is engaging with me to help me resove the issues. I look upon the counsellor more as someone who can talk with me. Also you must give it time, a bit of patience
Re…" She subsequently had an annual MRI that showed at least 4 new lesions with one large lesion that was enhancing in the parietal lobe."For my annual brain MRI scans on DMF I am not offered contrast.
Nah, Don Giovannoni, what you have done here is used your position as a neurologist to override personal choice, and essentially brainwashed your patient to go onto a toxic neo-DMT that may not even work for her. You may even invoke secondary co-morbidities in this patient, all because you are so massively convinced that you're in the right and that your patient is kinda 'thick'.Don Giovannoni, what you have done here is pure exploitation. I'm not saying that your actions are malicious, I'm saying that your actions were arrogant and singular. Not cool, baby.Mate Giovannoni, I am very much troubled by the way you're exacerbating the anxious position of MSers, all because you think you're right. That's demented, son.Atrocious.
She hasn't decided to go onto a DMT yet. The decision is up to her and if she does say no we will continue to manage her as one of our patients. At least she now knows the natural history of MS; i.e. what the likely outcome will be with no DMT.
Advice from someone that is an acknowledged expert in the field or the ill-informed and flat-out wrong pontifications of an unqualified nihilist.Difficult choice isn't it, Dre?Execrable.
"…essentially brainwashed your patient to go onto a toxic neo-DMT that may not even work for her…" I have to say, that crossed my mind too. And I am no nihilist. Just a PPMSer.
If you read the post again and Prof G's comment, you'll see no brainwashing was involved, just the presentation of information so the pwMS can make an informed decision to start a DMT or not in her follow-up appointment. What's so terrible about that?
Of course, some might prefer the "Come back in a years time and we'll see how you're getting along" approach but that does have its risks.
'I also recommended that she should be referred for CBT and mindfulness therapy to help her come to terms with her MS and to treat her anxiety.'This is empowering the patient. It is not the actions of a doctor wishing to brainwash a patient or override personal choice.
I think that the fact that the patient had an emotional breakdown sort of feels like, and I must choose my words carefully here, that she was almost groomed/ positioned into wanting the DMT.I am no nihilist and believe in what Prof G is doing with early treatment. It's just that this story, or the way it's detailed here, seems weird.Thanks for all your hard work though.
Do you live with MS Dre?It is a neurologists job to express options, express dangers and work with patients towards making choice.Its been shown over and over and over in MS that Neurologists who DO NOT work towards individualized patient care in MS (and other neurological diseases) result in poor long term outcomes. This is WHY the MS clinical paradigms in patient engagement are moving albeit too slowly to personalized health management.In the USA many years ago the HMO emerged due to patients broadband upset over personalized care. The malpractice, mistakes, costing etc. The HMO emerged and guess what, the mistakes still happen, the costing has skyrocketed. NOW in the USA most folks want personalized medicine having a VERY short memory (common in the USA) not even recalling why or how the HMO emerged.MS Centers are having better outcomes with MS patients due to specialization, informed, activated and actionable patient care. The same way a Heart Hospital (such as where I live, Roch. General) get better outcomes due to specialization, personalized medicine, care and being informational to patients.In multidisciplinary care facilities and clinics resources often preclude the ability for patients/families to be well informed. Thats the real truth behind disease management (broadband) and impacts on patient outcomes.If you think its responsible to tell an MS patient, "Eat right, Exercise, take supplements and do not take medications." to manage multiple sclerosis… Well, then not only are you ill informed but in need of a simulated bout' of MS. Let me put 60lb weights on your legs, a foot orthotic, cover one of your eyes, and botox one of your arm muscles and tell you, "Eat right, exercise and meditate."Are medications bio-toxic? Sure aspects are. Disease has existed before mankind in species long since gone. DMT's are not curing MS they are a tool to try stave off disease progression.Some people do live medication free with MS and have good results. Most that try do not.Stress while not scientifically proven to induce MS exacerbations statistically appears to be a factor. Being told one has MS with no actionable path towards management is irresponsible. Research at WVU is displaying a connection between the immune system and brain which were thought to be independent up until just last year. That research may rewrite every neurology textbook on the planet.So Dre, What would YOU say to this patient discussed in this post?
Not sure your criticism is justified. Prof G has already stated that she hasn't yet decided to go back onto a DMT. Is it not his role to do what is best for his patients?
Sometimes you need denial to get you through. I have been waiting 26 weeks for the results of an MRI scan to see whether I have any new activity. I have chased the results more than once and I have still had no response. I know my MS team are really busy; but if I think too carefully I get very anxious that their inattentiveness is the equivalent of playing Russian roulette with my CNS. I can switch it up though and just deny the entire thing; go about my daily life like it’s not a problem (which it isn’t really) and I’m much happier as a result. My journey through DABDA, has not been linear but has cycled dependant on a huge number of things and I'm not sure I'll ever get to "acceptance"; I wouldn't think I'm alone in that!
If you are in the UK you can request a copy of the MRI clinical report. The clinical report will say if there is new activity. I got a copy of my clinical report from my GP surgery weeks before I got my letter from my neurologist telling me there is new activity.
Thank you for responding. The issue with that is, I would get a radiologists report, which I suspect would be unhelpful in my uneducated hands; what I am actually after is my neurologist's interpretation of that radiology report…. It's ok though, In the meantime I have denial and/or Pinot Grigio :-).
The report may say no evidence of new lesions. My previous report had no new lesions.
I really liked this post!I am sure that most of us pwMS have passed or we are in some of the phases of DABDAA, because in reality it is very difficult a news and an experience of a disease that besides being incapacitating and is still incurable. And often the psychological aspect of how the news and disease affects us is generally overlooked both by who owns it and by whom it treats, takes care of a pwMS.I didn't have the stage of denial, since the diagnosis I started the treatment, but I had the depression phase and only the therapy really managed to help me overcome and continue my life. I think that accepting the disease also involves finding an effective treatment that brings a bit more stability with the minimum that it's possible to ameliorate side effects so that the individual can move on.
It is a shame her first neuro wasn't able/willing to offer the same considerations. What is going wrong at neuro school that the quality of consultations can differ so wildly?
Denial is bliss. I was able to continue living like everybody else, working full time, caring for my family etc. Once the diagnosis sank in the sky fell on my head and I was left completely shattered. Neurologists are good at starting DMTs, but they are not so good (don't have the time?) to see the total picture.
This is exactly why a set of protocols need to be developed for entry into MS. Your experience is FAR from unique, I hear such things as often as proper entry.If you never drove a car, never even saw one being driven and I throw you the keys and say, "go ahead drive." All those other people on the roads, the signs, the lights, the gauges… All brand new to you. What are the odds of an adverse event?Pretty high right?Thats what happens with many an MS patient. In fact, not only MS, Lupus, ALS and countless others.Here (USA) one of the STARK differences in neurological medicine appear in disciplines. Stroke for example is very well pursued both in actionable medicine and informational aspects.For the aged, Geriatrics step in towards Alzheimer's, dementia's, memory, cognitive matters… In other words, there is a discipline of medicine dedicated and thus more focal towards that patient population.Example: My fiance's mom, 92 years old. She was an MS nurse. She's experiencing some short term memory issues. A general practitioner recommended medications. Her Geriatric said, "She's 92. There is going to be memory loss. We do not live to 200. Attempting given her health to medicate for this will more than likely cause more problems in quality of life than it'd solve. Need make sure she eats right, exercises and has the assistance needed. Supplement short term memory by usage of notes, lists and use your memory to supplement hers."Point being, MS patients in new entry need to have clear protocols and paths given their MS and symptoms towards management.DMT's are part of that but not all of it.A patient/family may need counseling from word go. I'd say every patient needs this but care systems think not. So, its needs to be evaluated.I'd say every patient needs PT/OT from word go and a dietician to move towards a more MS friendly lifestyle. Care systems think not, so, needs be evaluated.Clinical can only evaluate based on what a patient is presenting with and what they speak towards, they are not mind readers. At the sametime, the patient has no idea in new entry. Like driving that car about what they should be talking about.Then there are those who already live with MS. A whole nother' barrel of fish.How are they moved towards better disease management and long term outcomes?This is not "the same disease" (per se) as it was 10 years ago due to DMT's. Odd's are patients will live longer and thus odds of comorbidities rise as do costings of care.Being 80 years old with a lifetime of accrued disability due to MS is not a pleasant thought is it?Now that at least seemingly effective DMT's exist and a pipeline with more coming, reasearch making gains in understanding MS pathology *IS* the time for change in protocols.Those changes need to be well thought out by MS clinical in three defined areas, clinic, university care, MS centers. Hopefully arriving at entry protocols and alteration of existing towards better long term outcomes.As they emerge patients need get behind it in big fashion so care systems adopt.Anything other than this, we as patients are doing ourselves and new entry a disservice and MS will demand payment of our quality of life.
Its not their brains that are burning
I never experienced denial or bargaining. Horror and terror would be the closest description of what I felt. Looking back I accepted the diagnosis from the off. Unfortunately I was given no information and felt like I was fighting for my life with little in the way of defence. My neuro at the time described MS as a few white dots on an MRI and told me I'd probably live a normal life. Back then I was told I was not eligible for DMTs and was advised to see how things go. Contrary to the neuro's view I felt like my whole world had ended. When I got home I Googled MS and tried to self refer to my local MS Nurse. I also rang all the helplines I could find trying to find some sort of help. Not having information caused me the most distress, that and feeling I was the only person taking the diagnosis seriously. I later paid for counselling and was diagnosed with PTSD. I went private as the NHS waiting list in my area was 12 months and I needed help then and there. My anxiety levels were through the roof for a long time. A few years on I'm in a much better place. I've developed coping strategies which don't require third party involvement and my MS team don't ask either. In appointments we talk about DMT side effects, blood results etc. MS itself is not generally mentioned. Appointments are very efficient if somewhat medical model in approach. These days I've learnt to prioritise MS when I need to and at other times let it drop off my radar. That's not denial. Its something I need to do to live a life outside its shadow.
This again points to portioning the problem. The first thing someone who has internet does is type in "Multiple Sclerosis." and they may get any number of websites.Some have up to date information, some not, some are minimally descriptive which was suitable not too many years back. Now however, much has been learned.Its overwhelming to try and learn enough AT DISEASE ENTRY to and attempt purvey clear/concise details of a persons MS to their neurologist… Besides! They just LEFT their neurologist and received diagnosis!So, sorta this chicken and the egg which first? Exists.Entry into MS is a personal pet peeve of mine… Not due to my experience per se but the buckets of other folks I have heard from. It does not need to happen. Its correctable!
There was no denial for me with a sister in law with progressive MS. I knew immediately what the disease could takeaway. The push for a DMT was instant, but nothing else. I've had to read educate and ask for myself. My saving grace was a chance encounter with a Neuro PT when I asked for help learning how to choose and use a cane. She opened doors for me for occupational therapy, urology, orthotics and more. So, like the above posts mentioned the DMT was offered, but the total picture missed by my Neuro.
Great read, thanks . I'm almost 3 years diagnosed . I've just had my first half dose of Ocreizumab, I knew once I finished having babies and breastfeeding I wanted to treat my MS aggressively early. My question is do you think Ocrevus will do the job or should I have choosen something like Lemtrada ? Is Ocrevus as effective as lemtrada at slowing brain atrophy ?Thanks
I think they work in the same way by depleting memory B cells.The difference is the length of time you take the two. With ocrelizumab the issue is likely to be infections.
I think it is fairly difficult to live in a prolonged state of denial when a patient presents with a clinically isolated event consistent with MS and has a MRI which shows enhancing lesions. Yet there may be hope that one doesn't have a chronic disease and this was just a singular event that will not relapse. Either way, the patient needs to understand the need to start a form of treatment immediately. Denial leads to loss of time and "time is brain". Stroke patients know this all too well.
I think humans are capable of amazing denial.I knew an 18 year old teen who was in denial about her pregnancy right until the moment she went into labour (which was a great surprise to her)…. People asked her if she was pregnant a number of times (her belly had grown) but her denial knew no bounds…
I agree completely with this. I was diagnosed from having an MRI after one fall and difficulties coping with hot weather (and some weird reflex stuff when I went to my GP). I lived happily believing the diagnosis was wrong for about five years. I wasn't offered any DMT in this time, so it didn't make any difference to what actually happened to me.
Being pregant its NO a disease…And its not Ms