Barts-MS rose-tinted-odometer: ★
When I described in a post that I was having flashbacks, related to possible post-traumatic stress disorder (PTSD) from my accident, it struck a chord with pwMS who bravely described their own flashbacks about the way their diagnosis of MS was handled. In response to this, we teamed up with shift.ms to do an online survey of its members. We advertised the survey via the blog and many of you participated. The results of this survey were so worrying that we submitted an abstract to the Association of British Neurologists (ABN) meeting. This abstract was accepted and here is the poster for you to read.
This work made me realise that this is a serious problem and we really need to do something about it, i.e. to ensure that the next generation of neurologists learn how to tell their patients that they have MS in a way that is supportive and gives hope. We really don’t want another generation of pwMS suffering from PTSD. With my renewed focus on MS prevention, I really don’t have time to run with this programme of work myself and I am hoping some young and highly motivated person picks up the baton and makes it happen. We need a national training programme for aspiring MSologists and other HCPs on how to give the diagnosis of MS in a way that doesn’t result in PTSD. In parallel, we need national support programmes for pwMS to deal with the emotional rollercoaster ride that inevitably comes after being told you have MS.
Don’t you think it is shocking that in 21st-century pwMS are left traumatised with flashbacks because of the way their MS was diagnosed? Are you not disappointed that most MS services don’t have support structures in place, similar to those in cancer services, to counsel and support their patients when they are diagnosed with MS?
Let’s make a difference so that the next generation of pwMS don’t suffer from PTSD.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
I’m sure some of the PTSD is down to the way our symptoms were dismissed or ignored. Or the way we were left to fend for ourselves (back in the bad old days).
Some of the PTSD will be MS itself – as MS also causes mental health problems – potentially exacerbating any existing trauma.
While simply acknowledging the problem isn’t “enough” – it is at least something, a start. We can’t fix problems until we admit they exist. It’s shocking that we’re (still) traumatised by our experiences of diagnosis. It’s encouraging that this is FINALLY being recognised – thank you for your work.
I’ll tell you what though, if my diagnosis caused PTSD, my second episode brought about epiphany.
From the locum GP hitting the roof when she found out I didn’t have a neurologist and screaming down the phone to demand I was seen urgently. She knew it was a brain-stem lesion even if I didn’t. To being seen by Dr. ***** at the ********* and having it all taken seriously – to having aggressive steroid therapy followed fairly soon after by copaxone (which was the best you guys had back then – you offered a teriflunomide trial, I should’ve said “yes” with hindsight…)
But from that point in 2004, I was taken seriously, MS was taken seriously and I was with people, supported by people, under the care of people who were / are intent on beating this despite the odds. And bit by bit, step by step, day by day you’re getting there – to the point where treating MS isn’t about trying to “manage” decline but is about trying to manage side-effects. It isn’t about keeping people as comfortable as possible, it’s about keeping people active and working and disease-free.
I used to wish I’d been born 25 years earlier because it was so much easier back then to be a musician which is what I’ve always been.
Then I got MS and was so glad to be around now when there’s treatments.
Now I wish I was 20 years younger, because NOW we really have treatments that can control MS. But still – I’m so glad to have doctors willing to be aggressive with MS and glad that’s becoming the norm rather than the exception.
I’m not really sure if it counts as a flashback but I remember word for word what was said to me by my first neurologist (I want you to go away and wait for things to happen to you) and by you when I was referred for a second opinion. It was only when I heard your words that the suicidal feelings started to fade. That was eighteen years ago.
To be honest, until MS can be cured or the doctors can tell pwMS with certainty that there won’t be progression from the point treatment is started, pwMS will suffer PTSD from the diagnosis.
My neuro delivered the message very well and told me he could see me live a normal life and see me unharmed by the condition for the next 30 years (and at a later point he changed to 50 years), and also warned me don’t look into too much on the information available online, MS is a different disease now and I’m lucky been diagnosed now.
The flashbacks come from the uncertainty of having MS – there is no biomarkers to test treatment is working, or not working, long term side effects of DMTs, hidden progression, doubting myself if I have cognitive impairment and the word “smouldering”, and if it is happening or not.
I’m taking this from a slightly different angle – from the poor old neurologist’s position. Many of the older neuros (trained in the 70s) will have been trained / practised their profession in an era when there were few, if any, treatments for the diseases they cover – Parkinson’s, MND, Alzheimer’s, Huntington’s….. So without effective treatments to offer, they focused on the diagnosis. My neuro (18 years ago) was overjoyed when he read out the MRI report at my second appointment which confirmed his suspicions from my first appointment. I was left shocked because my internet searches of my symptoms had pointed to the same diagnosis and I’d seen the pictures of people in electric wheelchairs, references to Jacqueline du Pré dying at 42….
The neuro could offer me nothing until a second attack. Don’t get me wrong, I’d love to throttle this guy (I’m a shoot the messenger type person), mainly for his arrogant attitude and the throw away line when I left the consulting room – “I’ll send a telegram if they find a cure”. On reflection in was a depressing job for him – serving up grim diagnoses for pretty much every patient and having nothing to offer. How he must have envied heart surgeons and oncologists who save lives and give patients hope of a brighter future.
I’m not sure how much a neuro can really improve the session where they dish out the diagnosis. The problem with MS (and most other neurological diseases) is that it is still a degenerative disease and will get worse. Treatments which stop the processes driving MS will make the job of a neuro way more satisfying. My neuro had no treatment to offer me and when I asked him about the future said something like “many patients can still walk after 15 years”. Hopefully, some time in the not too distant future, the neuro will offer a combo of therapies and tell the patient “we caught it early and the therapies I’m giving you should minimise the impact MS will have on your life”. This will make the whole diagnosis experience way less traumatic, will give the patient real hope, and will provide more job satisfaction to the neuro.
Try as you might, the Trauma You experienced and the Trauma we pwMS experience are parallels.
You have a New “condition “
You Lost Something (not always sure of What You lost)
You don’t know what’s next (and can’t get worse case scenario out of your scarred brain)
You don’t know how you’ll love,earn,be,feel Normal again
You don’t know if your Doctor is good enough, smart enough, nice enough, no pressure Doc.
Dr. G. Try not to try too hard.
PTSD Is a part of this MiSerable disease.
Psych referral or Preferably Clinic based Neuro Psych Doctor.
My Neuro Doctor Fellow was also a friend. She told me.
Then I went home.
Grief, anger, You have to go through The Stages! No matter what!
Then I went back for the plan.
She didn’t jump right into the glossy Pharma bling.
She asked me if I’d had a good cry yet.
Then I cried.
And that was my beginning. As hard as it is, like your trauma, you simply have to accept it and move away from that day. You Must go through the stages of grief when you lose something so precious like your health and function. When the Future is murky, uncertain. Flashbacks to people you’ve known who were so sad looking.
I worked with a lot of Neurologists. I’m grateful Angie told me. Most, in my experience, lack the psych skills that would really help. They get too cerebral, or detached, or focusing on their gig. Angie had psych skills and she felt horrible seeing a friend lose something Precious, her envisioned future.
I got over it. When I recount my experiences, it’s a memory, not necessarily a Ruminating.
I’ve seen psych a few times over the years. They really help with adjustment to a new life, depression, anxiety. Neurologists need to hand off that task, preferably with a team, Psych, Social Worker (financial, medical coverage/needs,emotional support, family assessment, employment issues,periodic check ins),PT/OT/SLP eval and preventative, cognitive,restorative support, Pharmacy.
BTW, your blog helps many of us looking for deeper answers to our questions. MS Doctors don’t really have time to chat. I take my written assessment of my status into clinic because they understand SOAP notes 📝
I focus questions carefully to get them all in. Most people had never met a neurologist before. They are, well, different.
Very helpful to me is the support group ShiftMS. Early on I tried to engage with USA MS society. I wrote a story which they rejected. They are shills for money, not honesty. Shift MS, however are let it all hang out people. A welcoming group. I think that has helped me the most, People sharing, like minded, dealing with MS, like I am, with loved ones who are puzzled, wounded, frightened too. Support groups are better to me online. Then you Pick who you gel with.
Hope this helps.
Many years ago I heard PTSD being described on the radio, it was just coming into prominence and acceptance, andI immediately thought ‘that’s what happened to me’ – flashbacks, ruminating, physical shock, extreme anxiety.
As well as the way it was first mooted that my symptoms could lead to MS, there have been several instances of poor choice of words or phrases delivered by neurologists, eg ‘it must be like having the sword of Damocles swinging above you’. It would be helpful if HCPs understand that their choice of words is really important – the person they’re addressing will remember only parts of what they’re told and focus on particular encouraging/discouraging phrases. Most encouraging phrase for me was ‘most people manage well’ – again, never forgotten, thanks to a neurologist in California.
I think you’re right to try and get something done about this, I hope it happens. Thank you.
Oddly enough, it is my wife who has MS but I am the one who got PTSD symptoms for the two years after the diagnosis. We had just moved into a different country 4 months earlier and had no friends or family nearby. We were 27. My wife has RMS but the relapse that led to diagnosis (or chain of relapses?) was very long and stepwise but quick worsening, over a period of 5 months – from hiking hills in september to not being able to walk for 5 minutes in april. So initially it did not look like RMS (no identifiable relapses, just
worsening) but some kind of fulminant, progressive MS. I felt desperate and helpless to watch it happen in front of me and powerless to protect her. I used to have nightmares practically every night and to wake up shaking and gasping.
It will be the third anniversary of the diagnosis next week. And we will celebrate it. Because it marks the third year without a relapse after a tremendous recovery (alemtuzumab in september 2018 and 2019). She recovered almost fully from her relapses and we’re back to hiking. But I occasionally get the PTSD symptoms again. Which feels absurd and selfish because my wife’s MS is about her, not me.
(PS the choice for alemtuzumab was informed by our readings on this blog)
Thanks for your comment, as you illustrate it’s not only the pwMS that can be affected and so glad the blog was helpful in your treatment choice, which sounds like it’s having the desired effect. It’s little testimonials like this that keep us going (under increasingly trying circumstances).
I couldn’t relate more, thank you for sharing your thoughts, another MS husband.
Where I live in England stroke medicine has good aftercare too. I was passed from a very supportive team there onto neurology. I would compare it to being dumped in the Arctic and told to find my own way home.
When first diagnosed I learned that I had a disease dissolving my brain, no one new what it was, it couldn’t be cured and I would have to decide what drug to take. I struggled to work out what day it was this was not the time to study pharmacy. (I had a medullary lesion, still not sure what that is, and felt stunned for months as if I had been bashed over the head) I remember sitting at home with a pile of glossy leaflets (no expense spared on the marketing) including a boxed cd, missing the lovely ladies who had helped me at home after being (mis)diagnosed with a stroke. I could ask them anything, they were there for me and I felt supported. It was disorientating to lose that.
I agree with a point made above, it’s not ideal for msologists either, I think better support for patients would also benefit them too.
Will the generation of neurologists who wear bow-ties be prepared to listen to someone 20 or 30 years younger than them telling them how to communicate to their patients that they have MS? I suspect not.
I was told at THE DOOR FRAME, on the way out of the appointment with my GP.
Me….”What does this {insert medical talk I can’t mind} normally mean?”
GP.,.”It tends to be MS”
ME….”MULTIPLE SCLEROSIS ”
I thanked him. Mannerful always.
I was pleased. I had thought I was dying, since 6y11m, you see.
I have a wee tear in my eye, thinking on both instances.
Repairing MS, is my point in life, my calling, my aim, my eventual target.
I’ve lived the cause. I know the way to repair all pwMS.
This is my way of dealing with my PTSD.
I don’t expect any doctor to give two hoots about how my diagnosis made/makes me feel. I just want facts. But my slow PPMS has never really done anything sudden, just always a slow burn. And I “knew” it was MS long before my diagnosis, because of my Norse ancestry, because it’s not uncommon where I live etc. So I personally only care about a real therapy for progressive MS (EBV), I need no intervention or special treatment for stress.
If one believes at all that a person’s emotional state is important and that we could call that state critical to our mental “health” – the docs absolutely believe that because they tell us that all the time as they require us to fill out seemingly endless depression screening questionnaires – then requiring docs to not be inconsiderate tools who damage that health unnecessarily, is really not that big a stretch.
The world is drowning right now in people who don’t care what damage their words and demeanor inflict on others. I’m happy for you that you’re so tough that getting a massively lousy diagnosis required nothing of the humanity of the person giving it, but for the bulk of people, instead of irritation or coldness in their doctor (those have their roots in emotions too I might add) a touch of compassion and some good old fashioned manners, can work wonders.
No, I’m not “tough”. But I don’t waste my time on cold fish or trying to squeeze blood from stones.
I remember very clearly when the hospital physician in Leuven, Belgium told me. I was alone, in a different country and communicating in my fourth language and proud I managed not to cry in front of him. It went along the lines of” Well it is MS. Find yourself a neurologist and have a good day”.
This experience motivated me to become involved in the local MS support group to make sure that at the very least any doctor involved in delivering this kind of hard to swallow message had some support material (“where do I go from here..”) to hand out to the newly diagnosed. And I finally managed to get the picture of a person in a wheelchair removed from the leaflet cover aimed at just that audience…
Agreed that it should be for HCP more generally. Probably for not just MS either..
I could not fault the neurologist I have seen. My GP was also amazing.
I did however need therapy after a traumatic (now known to be) MS experience in A&E with wrong diagnosis / bad communication. So i would say it is something that can be improved across the board.
Maybe if the consultant in A&E knew about the more varied symptoms of MS it may have been considered at that point in time. And why not, isn’t it the most common neurological condition in the young?
Not convinced his bedside manner would have been any different though…
Thank you Prof G for showing compassion to those of us diagnosed with MS and the trials and tribulations that we go through at the time of diagnosis and with regard to relapses and the care that’s being offered thereafter. I would just like to applaud you in bringing this matter up as it is well overdue! People with MS deserve the same amount of care and compassion as anyone else who has been diagnosed with a debilitating chronic incurable disease. And certainly at the time of diagnosis compassion is paramount as you (Neurologists) have just given someone devastating news, so without a careful explanation of the diagnosis and prognosis that person will go home in a state of trauma and PTSD is therefore inevitable.
I’ll never forget the day I was given my diagnosis, just simply being told “I don’t know if anyone has prepared you for this but you have MS but don’t worry not everyone is blind, incontinent, and wheelchair bound, go home and get on with your life” my diagnosis was 24 years ago and I still remember it like it was yesterday!
I do hope the New generations of Neurologists learn from the mistakes that were made many years ago from their ageing colleagues in the field of Neurology.
People these days like to play a part in their own car plans admittedly this was never part of a discussion between patients and consultants in the years gone by, which sadly has left many traumatised people struggling to deal with life and to come to terms with their disability, a feeling of not having any input as to how life pans out for them can be so distressing 😢
So we are “talking of the same animal”. This is the (introductory paragraph) definition of PSTD that was offered in DSMIV, which was the only medical definition followed by licensed Psychologists and Psychiatrists in the US. (DSMIV has changed to DSMV with overall minor changes). I’ll make a couple closing comments at the end regarding mixed messages.
DSMIV (1996) [US]: The essential feature of Posttraumatic Stress Disorder is the development of characteristic symptoms following the exposure to an extreme traumatic stressor involving 1a) direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s personal integrity, or witnessing an event that involves death, injury, or other threat to one’s physical integrity, or witnessing …, or learning about unexpected or violent death, serious harm, or threat of death or injury experienced by a family member or close associate; 1b) the person’s response to the event must involve intense fear, helplessness or horror; 2) the characteristic symptoms resulting from the extreme trauma include persistent reexperiencing of the traumatic event; 3) persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness ; 4) and persistent symptoms of increased arousal. 5) The full symptom picture must be present for more than one month and 6) the disturbance must cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. [remember, it has to satisfy all 6.]
(continueing) Traumatic events that are experienced directly include, but are not limited to, military combat, violent personal assault (sexual, physical, rubbery, mugging), being kidnapped, being taken hostage, terrorist attack, torture, incarceration as a prisoner as a prisoner of war or in a concentration camp, natural or man made disasters, severe automobile accidents, or being diagnosed with a life threatening illness. [The definition and diagnostic criteria go on at length for pages; that’s how mental disorders are diagnosed and documented, with the idea that either you are, or you are not (whatever)].
So the outlying question for me begins with how society defines MS and then consequently, how an individual initially defines it in their life. If we describe it as “life threatening”, how do we in the next breath say it is not that big of a deal? In my opinion, that’s what the NMSS and many other charitable organizations do. Put out a horrendous definition and then quell the response. Try to find a job with MS, or a girlfriend, when you’re 30 w/MS, as “positive” as you might be (like I was), because the words and understandings of MS are already out there.
So no, it does not surprise me that people are left feeling traumatized after diagnosis. Care providers do need to be educated and/or trained, but I guess many of them will be unable to handle the mixed messages that were already given to them. MS is a very big deal, but not the end of the road. As one responder said, “most people manage well” [and I’ll add “or some version of that”..
My diagnosis was something of a relief because I had been so sick and at least I finally had a reason. My doctor was terrible at delivering the news though. She almost seemed excited to tell me (like it was fun for her!). I needed comfort and I needed information. She didn’t give me either and I was alone in the hospital recovering from symptoms.
Thank goodness for a woman who volunteered with the hospital and heard about my case. She came to my room with pamphlets and kindness.
It would definitely be nice to have a better system for helping newbies.
I don’t want to side with the Dr. who gave you the news but maybe she was relieved to have a diagnosis. Still, there is no condoning her poor bedside manner. MS is no joke.
You are kind to give her the benefit of the doubt and I would normally agree. This doctor did not have my mental well-being in mind. She got scared when I cried and practically ran out of the room, then left me alone until the next day when I insisted she come talk to me before I would take a medication. She put me on Avonex(huge needle!) before even explaining what MS was.
I don’t think she was probably a horrible person, but she should not have been allowed to handle that interaction. She really had no empathy at all.
There is a lot that Neurology could learn from Oncology, and some other specialties I expect, there isn’t a need to reinvent the wheel. Psycho- Oncology was well established by the mid – 90s. Advanced Communication Skills training for Doctors and Nurses has been compulsory for more than 2 decades. Nobody expects them to be perfect, and everyone can observe the HCPs who still cannot grasp the importance of compassionate listening. I remain baffled however by my experience as a PwMS for 5 years; and yes I have PTSD. When I first encountered the MS system I could hardly believe what Neurology HCPs thought was acceptable.
Thank you for this post and highlighting this issue.
I would invite you and some of your colleagues to access ‘Cancer in Context. A practical guide to supportive care’ by James Brennan, Oxford University press, published nearly 20 years ago. Even though it’s focus is people with cancer I suggest it could be used as a template to identify some important issues for PwMS, and their families. No need to start from scratch.
I have flashbacks of my partners diagnosis. The neurologist turned around the screen so we could see the MRI and asked us “what do you think it is?” As a healthcare professional I had highly suspected MS and could see the lesions on the MRI, before my partner (not a HCP) was told what it was. I’ve thought about how perhaps the neurologist was just trying to work out what our current understanding was of the situation, so he could tailor how he could deliver the news to us, but it missed the mark. The consultation after that was very quick and we had no sense of a plan of action. We went out for dinner afterwards and just remember us sitting in shock, I was thinking about the lesions I had seen on my partners brain and how we’d been asked to guess what it was. I definitely agree that more training is needed to provide these diagnoses, but we always remember vividly where we were when we’ve had bad news so it might be a mountain to climb to get it right first time.