PTSD

P

Barts-MS rose-tinted-odometer: zero ★s

I look after a patient with MS who is now in her late 60’s. She was diagnosed with MS almost 30 years ago in the early ’90s. She has done very well and has by definition benign MS. Apart from mild unsteadiness of gait, a weak right leg that causes a mild limp when she is tired and back pain, she is fully functional. She was treated with interferon-beta for 14 years and after having no relapses for over 10 years she decided to stop taking interferon-beta. She made the decision to stop interferon-beta treatment when she retired in her early 60s. Her only ‘MS medication’ is 300mg of gabapentin at night; this helps dull the back or myelopathic pain so she can get a good nights sleep. 

Despite having MS and a good prognosis she suffers from PTSD (post-traumatic stress disorder) in relation to how her MS was diagnosed by a private neurologist in London. She had a prior history of vertigo and unsteadiness of gait and had developed weakness of her right leg, presumably from a spinal cord attack. This was before the world-wide-web and DMT era so most people in the general population did not know a lot about MS; their knowledge of MS was based on a billboard advertising campaign of the MS society showing young pwMS in wheelchairs. The idea of the MS Society’s campaign at the time was to scare the general public to donate money for research. In addition, to this, the poster child of MS at the time was Jacqueline du Pré, the celebrated British cellist, who had tragically died at the age of 42 from MS. Jacqueline du Pré had died quite recently in 1987 and as her death had been extensively covered on TV and in the newspapers. The general public’s view of MS in the late ‘80s and ‘90s was not a very good one; MS was a disease that struck you down when you were young and invariably caused disability and early death. How things have changed!

The private neurologist who saw my patient was not an MS expert and had not prepared my patient for the diagnosis. When she returned for her follow-up or diagnostic appointment he simply walked up to an old backlight x-ray box on which he had pre-arranged her MRI scans and said without looking at her that she had a large number of white blobs on her MRI, which confirmed his suspicions that she had MS. He then turned around and said that he will write to her GP with the details. And that was the end of the consultation; no time for questions, no information on MS its treatment or prognosis. My patient recalls having to walk out of the consultation with a cold panic enveloping her. Tragically on catching the tube home she ended-up opposite one of the MS Society’s posters of a young person with MS with a zip down their spine; the implication that the damage MS had done to the spinal cord was responsible for causing the disability. My patient recalls this person in the poster, leaning forward in a wheelchair. This is clearly not the kind of poster you would want to see minutes after you have been told that you have MS.

To this day my patient gets regular (almost daily) and intrusive flashbacks of this experience. These flashbacks are associated with a feeling of anxiety or panic, palpitations, hyperventilation, hot flushes, sweating and a feeling of doom. The flashbacks can come on spontaneously, but typically happen when she needs to come to the hospital and particularly when she has an MRI scan. In fact, MRI is such a problem that she has now refused to have repeat MRI studies. The white blobs have become a bogeyman and she imagines them expanding and suffocating her. Her GP has diagnosed her as having PTSD or post-traumatic stress disorder and had prescribed an SSRI (selective serotonin reuptake inhibitor), which did help reduce the frequency and intensity of the flashbacks. However, as the SSRI caused weight gain the patient decided to stop taking it. She has subsequently found CBT (cognitive behavioural therapy) and mindfulness or meditation helpful, but clearly not a cure. 

Interestingly, as I make a slow physical recovery from my injuries, I have started to have flashbacks about my recent accident. These are not intrusive and are typically triggered by crossing and traffic intersection or when I hear a motorcycle in the distance. These flashbacks are fleeting and not associated with any systemic symptoms. I, therefore, suspect flashbacks are a normal phenomenon for people who have just suffered a traumatic experience, but simply experiencing them provides a context and a deeper understanding of how traumatic it can be for someone to be diagnosed with MS or for that matter any chronic disabling disease. 

My patient above may be an extreme example, but when asked a large number of pwMS tell me the worst part of MS is being told you have MS. In the Italian study below a quarter of pwMS have symptoms of PTSD and more than 1 in 20 have a confirmed diagnosis of PTSD. This is way more common than I expected this phenomenon to be. The question I ask is why are we HCPs so bad at communicating the diagnosis of MS? Is there anything that HCPs can do to improve the experience? 

Nowadays most people who turn out to have MS already suspect the diagnosis because they have asked Dr Google. Is this a good or bad thing? Does it cause more or less anxiety going into a consultation suspecting the outcome?

George Pepper, one of the cofounders of shift.ms talks about his diagnostic experience as being a very poor one in that there was no support for people like him. This is why he started shift.ms, to create an online resource centre and supportive community to help people, particularly young people, come to terms with the diagnosis of MS. The Shift.ms YouTube movie Gallop is almost autobiographical and captures some of George’s experiences before and during the diagnostic phase of MS. If you haven’t watched the video before I would recommend it.

What were your experiences like? Have any of you developed PTSD as a result of being diagnosed with MS? Do you have any advice for other people with MS?

Carletto et al. Prevalence of Posttraumatic Stress Disorder in Patients With Multiple Sclerosis. J Nerv Ment Dis. 2018 Feb;206(2):149-151.

Chronic and life-threatening illnesses, such as multiple sclerosis (MS), have been identified as significant stressors potentially triggering posttraumatic stress disorder (PTSD). The study aims to investigate the prevalence of PTSD according to Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV-TR) criteria in a large sample of patients with MS. A total of 988 patients with MS were screened with the Impact of Event Scale-Revised, and then assessed with the PTSD module of the Structured Clinical Interview for DSM-IV and with the Clinician-Administered PTSD Scale to confirm PTSD diagnosis. Posttraumatic symptoms were reported by 25.5% of the sample. A confirmed diagnosis of PTSD was found in 5.7% of patients, but prevalence could reach 8.5%, including also dropout patients. Further studies are needed to evaluate if adjustment disorder could better encompass the frequently encountered subthreshold posttraumatic stress symptoms and how clinicians can deal with these symptoms with appropriate interventions.

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About the author

Prof G

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

47 comments

  • I had ‘flashbacks’ to sitting in the consultation room and being told to look at my mri scan. I declined because I felt so angry that my body was attacking myself that I just couldn’t look at the screen but the neurologist was adamant and turned the screen to me and I sat with my eyes closed. I also remember the nurse saying to me that ms doesn’t mean your life is over but people think it does and at that point I think I needed to be allowed to feel that way to start the journey of grieving and it felt really minimising. I have worked with a neuropsychologist for 12 months as my emotional reaction to ms was far more debilitating than my physical ms symptoms. I have now had both rounds of Lemtrada and have been discharged from neuropsychology and am feeling much better about life – that’s taken 2 years – that said I still haven’t looked at an mri image although might at my next annual review…..

  • I was given my diagnosis in Germany. My clinician had limited English and I limited German – it wasn’t ideal. This was back in 2005 without the benefit (?) of Dr Google – I had no idea. Subsequently through 15 years of experience I would strongly recommend – 1) clinician giving the diagnosis encourages the patient to have someone with them and this is made clear when appointment arranged. I do this for all consultant appointments . Consultant appts are brief, focused on clinical issues and sometimes overwhelming – a trusted friend/family member needs to be there to support and take notes. 2) Sadly on too many occasions I’ve heard people say they’ve been given a diagnosis and left with no support or next step. If physical information cannot be given ( eg actual leaflets, MS nurse appointment) then information should be given on how to access specialist help (eg MS Society, MS Trust etc shiftMs ) and a local therapy centre if available. GPs do not have this specialist knowledge. Patients can then access reliable information in their own time as questions emerge – and then do not have to access Dr Google. Providing a next step before leaving the consulting room is very important.

  • Well I have to say that tragic experience of being told you have MS is pretty much the same as mine except mine was in 2019….

    The consultant would not look at me, dismissed my questions about what other symptoms I had and gave me about 3 minutes to chose a DMD from his preferred two options. It left me feeling rather desolate and completely uncared for. It has not got any better subsequently.

    I have not seen him since and am in the process of moving hospitals.

    I have to say since that appointment I have only seen a general neurologist who is fantastic but cannot deal with the medication and freely admits his limits with regards MS.

  • This is not the right place for me to say most of this stuff – and I acknowledge that – but I don’t have direct contact to you and it needs saying.

    You (may) have PTSD. I am not qualified to diagnose – hence the caveat. But mate – you have PTSD – see someone.

    Flashbacks and the rest are not normal, post-accident – it is (or may be) non-processed trauma. This is (or may be) the start of PTSD. Please get some support and nip it in the bud. PTSD is a lot easier to treat before it’s had a chance to settle in and rewire … well you of all people know the neurology!

    Yeah I had PTSD and probably still do, to an extent. And anxiety. Not all MS… well… it’s all connected.

    Like your patient, I too had my initial scan done privately, in 2001, as my GP refused to refer me to a neurologist and accused me of being a hypochondriac. I’m lucky enough that my dad’s a former GP – he did some diagnostic tests and said, “there’s something there, you need to see a neurologist, I’ll sort out an appointment”.

    He didn’t “diagnose” me – though having had those tests since, and having spoken to him, I know that he knew what he was seeing. I went to the neurologist and he had me scanned, my dad took me up to see him for the results. The neurologist was very careful to avoid saying it was MS, he said it could be MS, it could be CIS, it could be ADEM, that there were treatments and that I should be OK but I must speak to my GP and get referred to an NHS neurologist.

    I then went back to my GP.

    My GP at the time was… I don’t wish to get into politics here but he’s a committed Marxist and deeply opposed to private healthcare – and I’d gone private – and I’d gone over his head. He told me that since I had seen a private neurologist I’d made my choice and henceforth all of my MS healthcare should be private and, no, he wasn’t going to be refer me to an NHS specialist. I simply needed to just “get on with my life”.

    In the 3 years that followed my life pretty much fell apart, I lost job after job, struggled with fatigue (which I tried to self-medicate with disastrous consequences) struggled massively with concentration and mental health. A had a 2nd episode in 2004. Luckily my GP was on leave and I was seen by a locum. She hit the roof – utterly horrified that I wasn’t under the care of an MS team, had me see straight away by “you guys” at Royal London. But the damage was done.

    I had a real problem with not being taken seriously.

    Later, a road accident brought on full PTSD – I was rear-ended by a lorry at night – the lorry probably had a GPS jammer in its cigarette lighter socket – so the driver could moonlight. I wasn’t believed and was accused of lying by their insurers.

    I had EMDR which helped a bit with the PTSD from the accident but still had mental health problems and poor decision making. After a disastrous move to the Far East for work failed spectacularly
    I was left homeless and living with my parents. I started seeing a psychologist – by luck rather than judgement he was an ISTDP practitioner. I responded exceptionally well – at least I thought so – he reckoned I was about average. But finally I had tools and a way of feeling and processing feelings that helped me face what had happened before.

    It’s not perfect. MS is neurodegenerative so I have mental health problems and everything else. I developed a strong urge for research – Dr. Google? More – Google Scholar and access to medical papers. I read, I learn, I find out what all the terms mean, I read the references and make sure they’re not quoting out of context – maybe that IS Dr. Google… I am quite assertive with medical professionals and won’t be fobbed off – probably a hangover from my old GP.

    This blog and your work, Prof. Giovannoni, have helped me immensely. I will be trying to get higher resolution cranial and spinal scans using the techniques you mentioned in a recent posting (high field, double inversion, magnetization transfer imaging, diffusion tensor imaging and functional MRI) – will probably have to go private. Thank goodness prices seem to be lower these days… I still need to be taken seriously, CD20 therapy hides the damage but it’s still happening… looks like the PTSD is hard to shift – I will try to get more ISTDP, I will be following your lead and trying to push my body a bit to start losing weight and un-couching 😉

    Back on topic – flashbacks are not normal. They may get worse. You may end up with other symptoms. I would strongly recommend getting some mental health support. You will be entitled to it – the other party’s insurance has to cover it. EMDR can help. ISTDP can help, other therapies can help because we aren’t all the same and there’s not one-size-fits-all mental health cure-all. But please get it seen because it can be more debilitating than the physical injuries you’ve had (yes, I know the injuries you’ve had – trust me I’ve had it – it can be more debilitating and longer lasting than that – from experience). We – all MSers – need you fit in mind as well as body. Please get well soon.

  • My experience came out the blue 18 months ago, when I was 29. I suffered with extremely painful leg, arm and face spasms which would randomly strike which ended me up in A&E as it looked like symptoms of a stroke. After 7 incidences it finally stopped and I was diagnosed a few weeks later in the ambulatory care unit, it was very unexpected.

    I now suffer with PTSD , have flashbacks of the spasms, for a while I was unable to wear certain shoes as they were similar to the ones I was wearing when it happened. Now any small feeling in my right side can give me the feelings of ‘doom’, described above and I can have an anxiety attack when I can’t stop thinking these spasms will happen.

    I don’t feel anxiety over the diagnosis in itself, it’s the symptoms that got me diagnosed, I’m terrified of them happening again, it’s a hard way to live at times.

    I’m thinking of getting EMDR therapy as CBT, I find doesn’t work for me. I’m hoping as well with time and changing to a more ‘potent’ DMD I can start to move on from those episodes.

  • I think I was very lucky with how my neurologist communicated my diagnosis, and it really helped me come to terms with it. I live in Belgium and was diagnosed 7 years ago. I remember that he prepared me for a possible diagnosis in my first appointment before the tests (I was still convinced I had a trapped nerve from running, and that my GP was being very strange in referring me – her practice partner lives with MS, so she recognised it immediately). He then came to talk to me after my lumbar puncture to say it was looking very likely that the diagnosis would be positive, but that we had to wait for the lumbar puncture results; then he rang me to confirm the diagnosis and ask me to come in the next day; and then we had a consultation that lasted an hour, during which he went through all DMTs, stopping every few minutes to ask if I had questions,. Finally, I came in the next week to discuss and pick the DMT. He encouraged me to write down any questions I had to ask him in the consultations or to email them if they were worrying me. Throughout, he kept emphasising that I could have a normal life, and he also talked about a holistic approach. When I think back, I remember his compassion and commitment, and I believe that he had a key role in helping me cope with the diagnosis.

    • I think an hour long conversation with a compassionate neurologist would make a huge difference to my life and how I manage my ms, how wonderful that you experienced that. Doctors can be hit and miss, always comforting to hear the positive stories.

  • For some, diagnosis comes at a particularly sensitive time, as the relapse may have been triggered by other distressing life events. My own diagnosis came as a strange relief. It was only a few months after my Mum had been unexpectedly diagnosed with angiosarcoma and subsequently died. I developed shingles when trying to get my Dad back on his feet after my Mum’s memorial. I was given the wrong advice by the 111 line, and the shingles got much worse before they got better. I recovered, then the following month got optic neuritis, which – in my traumatised grieving state – I assumed was a brain tumour. I already have MS on both sides of my family, so I (and we) am familiar with it, and how to adapt life to work around it. The diagnosis was far better than the experiences leading up to it. There were several family crises the following year, too. That period of my life is full of traumatic memories. PTSD? I don’t know. I had a bit of counselling through a CB therapist attached to my GP’s surgery the following year which helped enormously.

  • My diagnosis was an absolute car crash and i wont go into how the original case of CIS was managed 5 years previously. However, even after a second ‘attack’ defined by MRI i received a letter saying there could be multiple things causing this issue, with RRMS being top of the list. That was from a private neuro. My NHS ‘specialist’ then ordered a lumbar puncture, told me that it could be MS or it could be recurrent myelitis. The latter sounds better i thought (i was still hopeful). Then i was sent instructions to a ‘newly diagnosed day’. I dont know whether it was to try and bring me around to the idea but if it was, it did not work. I spent 6 months unecessarily in limbo, had another relapse that was in theory preventable and finally got my LP (and subsequent diagnosis and treatment) in July following lockdown. As you can probably grasp, i have not got over how if managed better, the outcome could have been different. The problem for me is one of trust. As patients, you rely on the opinion of your expert. It is only with hindsight (and a lot of reading) that i can see how it may have been dealt with better. Maybe i should place some blame on myself to have not educated myself earlier but i trusted the expert and i imagine a lot of patients will do the same

  • The period around diagnosis was definitely extremely stressful. Having suffered a complete collapse after being fobbed off by various medical personnel who kept telling to me to come back again while they “looked into matters” I was taken ambulance to hospital where I attempted (with failing speech) to communicate that I was probably not having a stroke (what the medics kept assuming|) but that it had been suggested I had MS. After a week in an acute ward I was sent to rehab where I encountered the best and the worst of NHS care. Everything had failed and I needed every form of therapy available from speech and language to physiotherapy. Some of it was sensitively delivered by lovely staff and some of it not. Experiences of the latter type led to extreme stress which might have been worse had I not found counselling after I left rehab. Everything I knew had been decimated in the space of a few months – career, leisure activities, ability to do simple handwriting, drive or go for walk … There followed awful experiences with DWP, (sadly) more insensitive medics, shunning by previous employers and so on ad infinitum.
    A condition that affects a person in such an overwhelming way, often out of the blue, needs to be explained and managed sensitively. Amazingly I was branded a ‘worrier’ for my anxiety following all this and all but reprimanded for this. In my case I was in shock for at least a year and am still very fearful in certain situations. The counselling helped but it would have been nice if the experience had been managed in a way which hadn’t made it necessary.

  • I just wrote a long comment in response to this where I detail my needle phobia and why it put me off seeking help, along with a very negative experience with the doctor who delivered my first MRI result, and concluded none of this amounts to PTSD because I now recognise another completely unrelated event in my life to have caused PTSD. A couple of things recently have caused me to recall that and I’ve had to pause for a bit of a cry both times (and today). It was over a decade ago, has no reason to affect my life now, I can recognise the triggers and generally avoid them! Probably I should deal with it more fully but as it’s something I can mostly avoid, that’s what I do.

    My laptop decided to reinstall Chrome so I lost that comment.

    I have no advice sorry. Avoidance won’t work in your case. And although I should probably have therapy for all sorts of things I haven’t. I’ll read the other comments with interest.

    The needle phobia is mostly gone by the way! But there’s a vitamin D test kit sitting on the desk in front of me that I’m not going to open just yet, my feelings are too stirred up now.

  • After a week in the hospital with transverse myelitits diagnosis and lots of solumedrol I came home and got a phone call from a neurologist I had perhaps met in passing while in the hospital who blurted out, “You have MS.” and that was that. I did later give him my two cents to NEVER inform another patient that way. I think by letting him know how awful that was to be told so uncaringly without knowing whether or not I had support at home, (I did not), and with no follow up in the conversation, my released anger let me avoid PTSD over the diagnosis. This was in 2011.

    When I did go into the practice to learn more, the neurologist got annoyed with me for asking questions and said I should be grateful that he was offering me copaxone as if I had been in another country that would not be an option. When I had the horrible reaction to copaxone, more than once, he told me to call the company and find out if anyone had ever died from it- that moment was the moment I decided to look for another neurologist. Oh, and they made a mistake in the bill for something with my insurance ID number and I got a bill for more than $20,000.

    My take away is that it is NOT enough to be a trained neurologist; one must also have compassion and understanding for how shocking the diagnosis is. One must allow for a longer appointment for the patient to digest the news. One should have on-hand referrals for psychological supports. I had none of that. It did have the effect of making me self-advocate and research like crazy but it need not have been so hard.

  • I had quite a traumatic diagnosis experience three years ago, as having been sent by the GP to A&E for an urgent MRI, I was told by a consultant (not a neurologist) that the swelling on my spine could be a tumour. This was done in an awkward way after a long day in A&E with my partner and young daughter. I spent 24 hours in shock (as did my partner) before seeing a neurologist at another hospital who immediately stated (in scrubs, in the the public waiting room) that it looked like autoimmune swelling and that I probably had MS. In the circumstances, I was relieved as I thought I had an inoperable neck tumour. I don’t have PTSD, fortunately but it was not a good experience.

  • MS wise my flashbacks come from receiving my diagnosis from the postman and from the awful pain of repeated attempts of a failed LP, along with the anger of the doctor because I was her first failure. She was very cross with me.

    I have flashbacks to childhood traumas and to giving birth the first time in the 90’s. I had an unelected caesarean under a general, the nurse in the recovery room hissed at me angrily through gritted teeth saying she had been called in on New Years eve because of me. She had clearly put a lot of effort into her hair and makeup. That night was followed by 18 months of terrible pain and fatigue which I know now was probably my first noticeable relapse, I didn’t have the mental strength to form a complaint.
    The flashbacks of her standing over my bed have settled into more of anguished disappointment at myself for not being well enough to report the verbal and physical abuse, she got away with it.

    There are a couple of others. When the flashbacks happen, to minimise the intrusion I try to engage with my senses. What can I see, what can I hear, what can I smell, what can I feel? Doing that brings me back in to now making it harder for my mind to dwell on past events.

    I wonder if you are experiencing this now because your mind is moving away from survival mode and is beginning to process what happened. I imagine there is a process you need to go through, I don’t know about these things but perhaps a therapist could help guide you, like the guidance you sought for your physical rehab.

  • It’s true to say that there will be very few clinicians willing to share their personal experience of health as you have since your accident ProfG.
    It’s also marked to see the details provided in just the 11 replies already posted.
    This has clearly resonated with PwMS as a matter of significance!

    From my own experience I’d like to add trauma. I don’t experience symptoms of PTSD and my diagnosis was also a form of relief. Firstly because I was anticipating something else and secondly because it meant I could relinquish any ideas of being weak, pathetic, etc.

    However, I do get playback in my mind of my initial consultation with a MS nurse and with my current Consultant, both of which robbed me of feeling I was being engaged with as a person. This was most striking with the nurse. Before my husband and I met with her I’d played out in my mind her spending a little time getting to know me/us. This moved on to her inviting any questions alongside providing reassurance that she was there for me in a fully supportive capacity. The mental scene played out with her talking us through the various DMTs in a clear summary, again inviting questions, before saying to head home and think it through.
    Instead my husband and I both recall barely sitting down before she dived into a drawer brought out the injectables and (as hubby puts it) ‘started flashing parts of her bod’ to show me how to administer them. When I pointed out I was interested in Alem (having found you on YouTube, tho not the Blog at that point) due to understanding it maybe neuro protective she told me that I probably knew more than she does, so she couldn’t advise me on Alem, but that I’d get one of the injections anyhow! That was it, consultation over!

    I left there traumatised, stripped of any sense of being Fi and with a crushing sense of having become akin to a prisoner medically, not legally, but with the same loss of identify, personality and a voice/rights.

    Advice ideas:
    I think one of my key pieces of advice to those referred to a neurologist is to try and avoid any preconceived ideas about how you will be engaged with based on your prior experience of clinicians. Apply this most particularly to what you anticipate of a diagnosis consultation.

    Do go with someone supportive and have them ready to make notes and also to ask questions and interject where they feel necessary. Ask for moments of pause where need is felt. A friend of mine came with me to my post Alem apt because my husband was away. She’s a psychotherapist and this was her excellent suggestion. When the neuro confirmed my MRI showed NEDA she went to continue speaking and I interrupted her and asked for a moment to absorb the fact. My friend and I grinned at one another and clashed hands and it’s one of my key ‘anti-trauma’ playbacks. Added to which I spotted the neuro enjoyed witnessing the moment too!

    Don’t expect to take on board all the information you’re given and don’t assume you can’t query or double check details or information. I was told in no uncertain terms that I did not meet the eligibility criteria for Alem (even have this in writing) Pushing back on this I was referred to a London base resulting in my receiving treatment with Alem in 16/17. Therefore add the get-out clause eg: I agree to receiving this DMT here and now, but if I change my mind (within agreed timescales) I want to be able to contact you to discuss and revise. Also ensure any potential for alteration or future development to a treatment plan are identified and in writing. With this in mind I’ve already had my written reasons for wanting to receive a third round of Alem if required.

    Most importantly be an informed and assertive patient who keeps copies of all their records and scans etc – it’s your history so own it/take responsibility for it. Following a failed attempt at having one MRI provided I asked for it to be brought up on screen and took a photo on my phone. Also add to it in ways that can assist. I take photos on my phone of my 3km results on a treadmill about once every three months and provide my neuro with copies so as to enhance evidence my stability. Initially I was taking the pics for my own benefit, however after the disconcerting inconsistencies in how the timed walk was conducted I decided to begin sharing the treadmill results.

    Finally recognise that sadly there’s little about time spent with the medical interventions in person that is positive and uplifting. I mentioned in another recent post reply that Prof Harvi Carel talks about the medical establishment dealing with the deficits agenda – everything being about what you’ve lost and are going to lose. So maybe try adding your own upbeat moment if you’re so inclined – anything about you that still works well or pleases you that it works. Anything you’re motivated to give a go or are find beneficial. I’ve adopted this with two neuros and my latest MS nurse and it can be noticeable how they respond positively to it also – it momentarily breaks them free of the constant deficits/ negative focus and can be a pleasant way to end a comsultation – you may well head out of the building feeling more upbeat, less dejected, depressed and even worse traumatised!

    Now your mind is evidencing the ‘hit’ following the excellent start to your body’s recuperation do please give it appropriate attention too ProfG.

  • I did not expect the diagnosis when I received it at the age of 50 and only knew two people with MS. One died in her 40s and the other was living in a nursing home and has since died at 59. So, yeah. It was a tough year and I did get a PTSD diagnosis from a psychologist.

    That said, the smartest thing I did was network to find people who had MS but were doing okay with it. It turned out I was two degrees from several women in their 60s and 70s who were drooling in a corner at a rest home. They were taking care of grand kids. Working. Traveling. It appears, these same women don’t spend a lot of time on MS forums talking about incontinence and baclofen pumps.

  • Definitely EMDR. Flashbacks are not normal, but it is a very recent experience. if they don’t fade, try EMDR. It does seems to work with some evidence of persistence and it is NICE approved. There’s a brief piece about it in a podcast on the Innovait website. A broadcast about May 2014, by a clinician I know and trust. I’ll check the exact date and number of the podcast.
    Meanwhile I had a weird experience in the sixties. I’d started SRN training and had live at home, so passing an advertising hoarding on the way to the hospital. In those days the ad, by the MS Society I think, showed a naked woman’s back in B&W. Instead of a zip, its used a visual pun. Where the spine should have been, a strip of paper had been ‘torn’ down to leave a black space. I used to sit on the bus everyday thinking, “I expect I’ll get that.” And I did! BTW, I’m no clairvoyant.

  • Either I submitted a beautiful but incomplete comment already, or it’s lost to the either. Here’s the TL;DR:
    I had PTSD for good reason. But the smartest thing I did was ask around to find women who had MS and were doing okay. I found 5 or 6 of them, all in their 50s, 60s, and 70s. And lucky me, they were all happy to talk on the phone with me about it. That was 8 years ago. Next year, I will be 60, and I still have a very low EDSS. It’s possible. Thanks DMTs 🙂

  • My experience with MS began 12 years ago when I developed numbness of the left side of the body over 3 days from the shoulder to the foot. I struggled some weeks to get prescribed a brain and neck MRI with Gd from my GP. MRI highlighted 3 lesions that were not identified by the radiologist as potentially demyelinated areas. My GP looked at them and told me to see a neurologist that after a complete examination where my tests were better than healthy people dismissed me reassuring that everything would have gone away as it came. In fact, it did but the diagnosis was missed. I may understand the difficulty of the neurologist because I was still playing football and doing sports nothing was wrong except the feeling and that I could not write. In 2013 I started to feel numbness at both legs from the knees to the feet. I went again to the neurologist and got prescription for electromiography and lumbar spine MRI that turned negative. Again I was reassured and dismissed again. It was 2013. Then in November 2019 I suddenly began to feel dizzy even when seated. A few days later when leaving the v stunning pool I had a couple of minutes of tachicardia that decreased shortly after but with accelerated bpms until midnight when I went to ER where after some tests I was dismissed with an incoming flu and some drugs prescription that I did not take because I know what flu feels like on me first in back and bone pain I did not have. Few days later I started to feel my right eye as it was dry and after a few days got sick of it and went to the ophtalmologic ER where they tested me and told to put some drops in the eye although I could read the letters on the table but told them that the vision was not clear with strange sparkles in the field. They missed the optic neuritis.
    Then I put the symptoms together and it took me a few weeks to get a brain MRI from my GP that was very dubious it could find anything luckily he also added the neck to the prescription. I reminded him of the old spots found on the first MRI but he did not took the thing seriously even after that. Anyway, I had almost forgotten the chance that I could have had ms as Dr Google diagnosed me in 2008 so I took my scan and went home quite convinced of having something else like a brain cancer. MS was out of my mind then. By the time I came home I received a call from the laboratory where I had the MRI and they told me the radiologist wanted to talk to me. So, being sure I had cancer and since I married my wife a few months before, I went to the laboratory at warp speed to have time to get the hit and to come home in the best shape I could without letting my wife come with me and hear the story from the source without filters that could help her. The user year before we lost our son at the sixth month of pregnancy and she did not deserve to take also that hit without hearing that from me. There I was told that it was not brain cancer, it was not ALS, but that there were a lot of spots in the MRI so I told them that it was MS. Then I told them about the past spots in the very old MRI and the whole story. TheY’ve got upset because I did not tell them… It was nearly 12 years ago for me it was gone! The radiologist was a woman and she was extremely nice to me, it was very late in the day and she took her time to show me the MRI, the lesions and to explain everything. She also referred me to a MS specialist center. Then I got back to my GP that even with the new scans was not convinced of the story but he made an additional prescription for an MRI with Gd to see if they were active or not. With the full package of scans and info I could book an appointment with the center in a short time because a friend of mine is followed there. So I went there and I was visited by a young neurologist (a woman also in this case). She listened to the whole story shaking her heads more and more as I went through the story. Then the senior neurologist (a woman also in this case) came in, heard the story and the diagnosis was made. She took the time to explain, to tell me that life goes on as before etc etc. They also were very very kind with me and still they are today even with their center becoming a covid treatment hub. Then she also saw I was quite informed (thanks BartsMS team!) and we went through the therapies quickly and we opted for tysabri even if was not the best with my limited knowledge. So, I got an appointment for the JCV test and a list of additional blood tests to exclude other diseases. She left me her phone number email and so on so I could reach her anytime in case of need… and then the covid came and it took 3 months to get results and moor months to go with the treatment. I was very lucky since she headed straightaway for a second line DMT probably because she saw I was very aware of the different levels of efficacy with first line and not so keen to go first line. My wife was with me at the time of diagnosis and knew almost nothing about MS while I was very well prepared: I had nearly 12 years to get emotionally ready so the situation was that she was extremely scared while I was prepared enough to face a discussion with my neurologist about treatment already at the time of the diagnosis. So I was well enough at that moment to be able to be supportive with my wife. So the story of my diagnosis was quite good I have to say. I think my neurologist is awesome! I cared to detail that most of the people that were positively involved in my diagnostic MS story are women in connection to the other ProfG post. Women deserves way more than what they get in our today’s society and what I described above is just a small drop of water in the sea compared to what they do. And that drop meant a lot to me and to my mental health! I am sure that if it was not for them I would not be as good as I am today.

    One point that I would like to see discussed in this blog, if it was not done before, is the number of times the diagnosis is missed at the first episode and why and what could be done to increase GP awareness. MS is on the rise and GPs should be prepared for the coming years. In my case I had 3 relapses before being diagnosed with the second one being dubious. In the paradigm of treat early and effectively, time to diagnosis is a critical point to address so that people are promptly diagnosed and treated to get the best possible outcome for them. If the trial of early aggressive vs escalation process what to me seems obvious now the early diagnosis will be of even greater importance.

    • Fabio, you’re story sounds much like my own although it sounds like you have had a rougher time over a longer period. I was also playing football after my first and second relapses. I think it did influence the lack of urgency for the nuerologist to confirm the diagnosis and start treatment after the second one and this is an important issue as all it takes is one nasty attack. I relapsed again (my third) before starting Ocrevus. It wasnt disabling but has left me with muscle twitches from my eyebrows down to the soles of my feet, which drive me absolutely crazy. I cant help thinking that this was avoidable.

    • Agree with you Fabio that I think this would be invaluable – to know how to improve HCPs awareness of MS symptoms so as to avoid the lack of diagnosis.
      My experience was nothing at all compared to yours excepting this one critical aspect – GP referred to an orthopaedic surgeon so he clearly wasn’t thinking MS. Subsequently the orthopaedic surgeon despite MRI and my asking him why it was I was having issues with walking and balance also missed my needing to be assessed at being at risk of having MS.

  • I laid in a hospital bed for five days numb head to toe a month after leaving hospital with covid with no idea what was wrong with me i was told nothing until the third day when they said my mri was abnormal and did not specify i then had to lay there for two days for a neurologist to show up and say you have ms dont worry about it didnt stick about to answer any questions so i now had numbness head to toe the bladder of an 80 year old and was barely able to move and to top it off a diagnosis of a disease which i didnt know existed i spent the next three days surrounded by people with brain damage from covid exposure and various other issues begging the nurses to get the neuro back to answer my questions whilst hooked up to steroids which i had to google to understand ! From then i left hospital with no plan and got worse and worse to the point now where ive had 3 sets of steroids in 6 months and can barely move! I dreamt of that moment everyday for six months untill i paid to see a specialist in london who was and is fantastic and i now see as my primary care neuro. My diagnosis has lead me from a fit healthy 29 year old with no history of mental illness to a blubbering mess that sees a neuro psychologist once a week and a counsoler to deal with the issues from the mess of my diagnosis. I have been pushed to breaking point not by the daily numbness and weakness in my legs and arms not by the vision issues or loss of career but by the mess the neuro created for me when diagnosed. No one should ever be in that position i have just been told i have ptsd by the neuro psychologist who believes i also now have something called fnd ? She has not really ellaborated on that yet but said she believes it to have been caused by the way i was diagnosed and will support me in any report i make against the offending neurologist. I have started speaking with the local mp about the conditions of the hospital and the treatment recieved as well as the algorithm for treatment he has taken a great interest and is interestead in taking it further with the health secretary. Ive learnt my way of dealing with it is to cause havoc for the person that caused it for me and change for others so they do not go through it. 😊

    • PTSD? Yes. Oh, yes. 1000 x yes.
      But not from diagnosis talk, but because I would wake in the morning and be rushed with physical sensations of heaviness and mind bending fatigue after I had my acute attack. I had to learn to cognitively separate my panic from bodily sensations and intellectually walk myself through my physical sensations every morning. Accepting my helplessness and structuring my day gave me a better sense of control. I have occasional panic attacks now when I have a duty or task I need to perform and my body or mind are not cooperating. Detailed scheduling and provigil help me remain calm that I can do some tasks with planning. Also, I have encountered a few doctors unfamiliar my MS history ( it takes up several file drawers) and one yelled at me that I didn’t have MS or lesions on my MRI and not to come back. I don’t know if he confused my file with someone else or what, but his report stated I suffered from dry eyes. It remains in my record and I panic whenever I feel a doctor is doubting my visual symptoms. Its been over 10 years and I am unable to psychologically bring myself to attend an appointment with another neuro ophthalmologist. There were Other events too that stemmed from my diagnosis, which traumatized me deeply. An SSIR for worrying has helped me and therapy with a psychologist. Meditation. And Self-advocacy. I think Doctors can lose sight of their patient in all the Electronic records. Records need to be universal, streamlined, and contain easily accessible executive summaries, not checked boxes.

    • She had done very well considering how long she has had the disease and how little DMT cover. At 40 years post-diagnosis less than 5% of pwMS have benign MS. I suspect that figure to be higher in the DMT era.

  • I was just pleased to have a diagnosis of MS… because I had such non-specific symptoms and had so many tests and scans before the MRI, I was either going to have MS, a brain tumour or something like ME which really has no specific diagnostic criteria except when doctors have ruled out everything else, and really does have no treatment. From that perspective MS was the lesser of the evils, and yes I did know what it meant and that there is no cure, but to me at least it seemed better than the alternatives.

  • I may have caused PTSD to the people that witnessed me hopping around the hospital ward in my underwear –
    (the crappy underwear that you put on when you’re feeling poorly and think you’re just nipping to the doctor’s for some antibiotics for an “ear infection” may I add 🙄) – but if neurologists insist on using such sadistic methods of assessment, then what can you do?

    No, in all seriousness, solidarity to the all people on here who have flashbacks to their diagnosis or relapses. Please don’t suffer alone – talk to someone and insist on getting support from your healthcare team. Like Prof G’s patient, it may never go away completely but you can learn how to manage intrusive thoughts so that you can deal with such incidents. 💪🏼

  • I would like to thank you all for sharing your stories; I hope it was not too traumatic revisiting these events.

    I had no idea of the scale of the problem; PTSD is clearly a major problem in relation to how HCPs diagnose and communicate the diagnosis of MS to pwMS.

    As a result of this post, I have contacted Shift.ms to see if they want to help by doing a larger survey on this issue. If this confirms, as I suspect based on your brave stories, the Italian data the survey results could then be used as a starting point to make HCPs aware of the scale of the problem. This could then be followed by teaching and training programmes for HCPs on how to improve their bedside manner so that they inform people about the diagnosis of MS with more empathy and understanding. It is quite possible that pwMS could be involved with these teaching programmes. One platform to start this is our Raising-the-Bar initiative being run via the MS Academy. I say this as Shift.ms is already leading on one of the workstreams; i.e. ‘Patients as Partners’.

  • GP in end of Jan/start of Feb
    Neuro in May
    Brain Scan end of June
    results in NOVEMBER
    the months waiting to find out traumatised me an awful lot. And from other stories I have seen, that timescale was pretty quick

    June to November for results is absolutely terrible! I was in a state of alternating hsyteria and numbness from Feb onwards, but the effect of having a brain scan and waiting so long for results has traumatised me forever.

  • I knew this comment would get a hefty response!
    I was a licensed Psychologist, and do have MS, and my symptoms and prior treatment are very much like the client DrG describes, almost identical. My experience being diagnosed was for me, a lower degree of trauma. It was disturbing, disquieting, troubling and at times scary, all prolonged. I was busy with other things and my initial symptoms were not disabling. The doctor told me my x-ray looked like someone who may have MS but further symptoms and tests would need to be performed. I was at a University so initially I spent a lot of time at the library, where I learned, MS was not a terminal diagnosis for most. At the time, Annette Funicello was one “poster child” for MS. Then I had more symptoms, which matched what I had read about, so I diagnosed myself. It was 1990-ish, so there were no treatments. I went on the Swank diet and continued onward- sometimes with numbness, sometimes blind in one eye, sometimes dizzy. My problems came not from physiological effects of MS, but from the social consequences- dealing with family perceptions, understandings and expectations; dealing with an employer; and searching for my “soul mate”.

    In my understanding of PTSD, it is usually related to a traumatic event that most would not debate was traumatic- for example, those explosions under the military humvees in the mid-east. Hard to argue the trauma part there. In the case of MS then, one would have to look closer (perhaps) at the individual’s psychological make-up and ask, why is THIS person having a harder time than others? And then you include those findings in your verbal therapies. There may be additional diagnoses. Be clear though, I am not at all saying that acceptance of MS is easy, it’s not.

    By the way DrG, make sure your patient doesn’t have flat feet! I recently went back 5 years in my calf pain, by attending to this, which I had since I was 12 and never thought about. I was sure, as was my MS Doc, that it was my MS. At least one pleasant surprise in all of this.

    • ‘In the case of MS then, one would have to look closer (perhaps) at the individual’s psychological make-up and ask, why is THIS person having a harder time than others? ‘

      I thought about this and realised that all my flashbacks, bar one, involve the failure of duty of care towards me. Most notably my childhood, which is probably why I am hit so hard by it as an adult and undoubtedly why I find myself in my current position regarding my ms and other untreated conditions. In my mind I have taken control of the situation, though in reality I am harming myself, but it feels safer because I am not at the mercy of others.

      Sorry Barts not the place for me to ramble about this but I wanted to thank Tom for sharing his insight, thanks Tom.

      • Good for you, Anon, for some possibly valuable reflection. See if you can find someone, a bit insightful, kind and all that, to talk to. Watch out for unqualified individuals or “technocrats”, and watch your wallet too. Good luck.

  • Yea, I thought this post would get a big response.

    I was a licensed Psychologist, and do have MS, and my symptoms and prior treatment are very much like the client DrG describes, almost identical. My experience being diagnosed was for me, a lower degree of trauma. It was disturbing, disquieting, troubling and at times scary, all prolonged. I was busy with other things and my initial symptoms were not disabling. The doctor told me my x-ray looked like someone who may have MS but further symptoms and tests would need to be performed. I was at a University so initially I spent a lot of time at the library, where I learned, MS was not a terminal diagnosis for most. At the time, Annette Funicello was one “poster child” for MS. Then I had more symptoms, which matched what I had read about, so I diagnosed myself. It was 1990-ish, so there were no treatments. I went on the Swank diet and continued onward- sometimes with numbness, sometimes blind in one eye. My problems came not from physiological effects of MS, but from the social consequences- dealing with family perceptions, understandings and expectations; dealing with an employer; and searching for my “soul mate”.

    In my understanding of PTSD, it is usually related to a traumatic event that most would not debate was traumatic- for example, those explosions under the military humvees in the mid-east. Hard to argue the trauma part there. In the case of MS then, one would have to look closer (perhaps) at the individual’s psychological make-up and ask, why is THIS person having a harder time than others? And then you include those findings in your verbal therapies. There may be additional diagnoses.

    By the way DrG, make sure your patient doesn’t have flat feet! I recently went back 5 years in my calf pain, by attending to this, which I had since I was 12 and never thought about. I was sure, as was my MS Doc, that it was my MS. At least one pleasant surprise in all of this.

    • I was mugged on my way home in the seventies, a month later I experienced symptoms of MS. I didn’t seek medical help until I was unable to stand up six months later. I was 21. Admitted to a neurology ward and I put two and two together and asked the question. Yes I had MS. Since then I’ve been told I had cancer four times and mugged once again. I remember all these events and diagnoses vividly. Also watching Jacqueline du Pre teaching on TV as a teenager. I’ve had psychological problems associated with MS, but I would never consider them to be PTSD.

      • PTSD follows some pretty ridged criteria. That’s not to say that you shouldn’t find your experiences shocking. I might, probably would. You mention Jacqueline du Pre who I don’t know but just looked up. Yes, the early understandings of MS were often not in our favor. That’s very atypical for someone to “die of MS”, from what I read. For me, I do remember, as probably most do, their 1st MS symptom and first time a doctor mentions the words. I suppose it is quite important for a doctor to introduce the topic in a straight forward way while at the same time being optimistic or hopeful. Interesting here in the US, from talking with others of similar age, we often share the same stereotypes. Jerry Lewis, a famous comedian actor of the day in the US, held charitable “telethons” for kids with muscular dystrophy. Those kids and young adults were usually in wheel chairs and seemed hopelessly disabled. Sadly, a lot in my generation hear MS and think Jerry Lewis. I did, when I was told to I might have it. Luckily I soon learned I was wrong- no relation. Anyway, keep plowing ahead as best as possible, and good luck.

  • For me actually finding out I had MS was a relief. It was the 7 years preceding the diagnosis where I had been referred to a variety of different specialists because I had unusual symptoms that was traumatic. Each one I saw I mentioned that my aunt has MS, and the last specialist I saw (a rheumatologist in 2016) basically told me I was a hypochondriac. In 2018 when things got worse I finally saw a neurologist (not an MS specialist). Again, I mentioned that my aunt had MS, and he said my symptoms were psychological. Finally in 2019 I was diagnosed with MS and I now am
    under the care of a lovely neurologist who is one of your colleagues.

    However, recently when thinking about the journey to my diagnosis, I become upset…I spent so many years thinking it was me being over sensitive to niggles in my body, and that the fatigue and concentration was my fault because I wasn’t eating or exercising right.

    I wish all those consultants in other parts of the NHS that I mentioned my aunt’s MS to had taken me a bit more seriously and referred me to a neurologist…it was as if they saw having an aunt with MS as too distant a relation for it to be a possibility to me. Does there need to be more awareness with other departments within the NHS of the part genetics can play in MS? And maybe with some older generation neurologists too who don’t specialise in MS?

  • Not PTSD, or diagnosis, but a bad experience with new neuro, and a solution.
    A year after diagnosis i moved hospitals. Aged 18, on my first visit to see a new neuro having totally lost sight in both eyes alternately, walking/ balance issues, loss of sensations in feet& hands, fatigue, toilet urgency, I was told as I was crying “oh you don’t have it that bad, you should see some of the patients in the ward upstairs”
    Totally belittled and negated my lived experience and trauma that I was dealing with. I felt like I was being told to stop being so dramatic and I had no right to be upset.
    I refused to go back to him and was instead allocated a lovely Dr Giovannoni (pre-prof days) who was absolutely fantastic! I was so lucky. I quickly got over that one bad previous encounter.
    So the remedy to trauma is Prof G.

  • 1994 – having read “Query l’hermittes” upside down across the GPs desk I was referred to a private neuro as work offered health insurance.

    Dreadful LP in the clinic room at the private hospital sitting backwards on a chair in just underpants and being instructed to lean forward and try to open my spine up by rolling my shoulders forward I glanced over my shoulder to see the neuro wielding what looked like the biggest needle I had ever seen. “Try to stay still, you may feel a slight tingling” as he slid it in to the base of my spine and promptly brushed something that caused my left leg to shoot out in a comedy fashion as he dishes the needle about. CSF duly drained I went to St Mary’s for the loudest MRI ever.

    I had looked up l’hermittes and had a rough guess at what was coming. Still; diagnosis chat went like this. So, Dominic. You have MS… Cue stunned silence as it became moved from a theoretical possibility to a real thing.

    Ok Doc, what do I do? “Eat less red meat.” Oh, right. Anything else? How will this plan out? “No idea. Only time will tell.”

    And that was it. Followed by 8 or so years of dealing with this by ignoring it completely and trying to pretend it wasn’t actually as thing.

    PTSD? who knows?

  • It took four years from my first GP referral for what we thought then might be a trapped nerve in my neck to an MS diagnosis. During that time I’d had lots of suggestions as to the cause of my issues but MS was never mentioned, possibly because I’d never presented with optic neuritis or any of the more ‘classic’ symptoms. I was not prepared and didn’t know what MS was, when my then neurologist casually dropped the diagnosis into conversation. He apparently thought I’d already been told or at least primed for this info. I was on my own at the appointment, and after telling me he asked me to wait in another room for an MS nurse to come and speak to me. The nurse was delayed so I ended up sat in the second room alone with my thoughts and fears for about half an hour. By the time I left the hospital I was in such a state of shock I returned to work and sat at my desk as if nothing had happened. It took many years and a fair bit of therapy to deal with that day! I didn’t have flashbacks, but even thinking about it made me feel small, anxious, angry and deeply upset.

  • I have very aggressive RRMS, diagnosed in April 2014. By September 2015 I was in hospital, fully immobile, had to be hoisted, NG tubes, catheters, nappies, central lines….. I can’t remember a lot of the early days, I had to have brain biopsies and plasma exchange and I spent 18 weeks in hospital. Have become so anxious about an enormous relapse happening again, it was awful, I had to learn how to walk again, live in constant fear of that type of relapse happening again. Have had bad luck with DMTs so my anxiety is through the roof! Trying to stay positive but it is so difficult at times, I have a teenage daughter who keeps me grounded, think I’d be a basket case if I didn’t have her!

  • I had a severe, disabling relapse in 2015, one year after my diagnosis in 2014 with HARRMS. DMTs were not working, got severely ill, had tumefactive MS and I needed brain biopsies, plasma exchange, ivig was in hospital for 18 weeks, had to learn how to walk again, it was awful. I am extremely anxious about my MS now, have certainly been een traumatised by it. It bothers me a lot that I can’t remember the early days of the hospital stint, people tell me all the time it’s better that I can’t remember it, but it isn’t. I hate that I can’t remember it. My daughter was 9 at the time, she saw me being hoisted, tubes everywhere, nappies… I also didn’t know who she was when she visited me in hospital in those early days, it has traumatised us both.

  • I would suggest that I and many others suffer with the opposite – pre diagnosis anxiety and ptsd. Problems from the route to diagnosis. It was neither short nor an easy process. Being told nothing is wrong with you or it’s all psychological but you know there is something significantly going wrong and will it be too late when they find out?- and meeting some healthcare professionals that would even laugh at you (yes this happened – by a neurologist who it later turned out missed lesions on my MRI). I NEVER WANT to interact with the drs at hospital as I’m in a blind panic, I always think they think I’m lying even when I had a Brest lump FGS!, it’s awful, I even have dip sticks for my urine so I don’t have to go. I don’t communicate very well when I do and I’m sure I come across like a panicked idiot(although I do my best to hide it). I’ve fallen trying to get out of hospitals after appointments. The format of online write it down and and get a response back has worked so much better for me! I really don’t want to see anyone not even on a computer screen. I know it doesn’t suit everyone though. These blogs are great and very useful. Many thanks to you and others for taking the time to produce them 🙂

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