Post traumatic Stress

Epub: Ostacoli et al. Prevalence and Significant Determinants of Post-traumatic Stress Disorder in a Large Sample of Patients with Multiple Sclerosis. J Clin Psychol Med Settings. 2012 Oct.

Background: Chronic and life-threatening neurodegenerative diseases may be associated with post-traumatic stress disorder (PTSD). 

Aims: Therefore, the current study was an investigation of the prevalence of PTSD in MSers, and identification of significant determinants of PTSD. 

Methods: Two hundred thirty-two MSers were consecutively recruited and screened for the presence of PTSD with the Impact of Event Scale-Revised, corroborated by the Structured Clinical Interview for DSM-IV. Furthermore, participants were administered the Hospital Anxiety and Depression Scale and the Fatigue Severity Scale. Twelve MSers (12/232, i.e. 5.17 %) were diagnosed as suffering from PTSD. 

Conclusions: Levels of education, anxiety and depression were significant determinants of the presence of PTSD.

“1 in 20 MSers have PTSD. Are you surprised? Being diagnosed with a chronic lifelong disabling condition is very stressful. The anxiety of uncertainty does not help. Do any of you have PTSD? An important message is that PTSD is a treatable disorder, please don’t suffer in silence.”

Additional reading: PTSD

Other posts of interest on this blog in relation to anxiety and stress:

24 Oct 2012
Participants were sent questionnaires to measure factors potentially related to anxiety. The factors included disability, depression, self-efficacy, locus of control, general stress, psychological distress and factors specific to MS.
12 Aug 2012
INTRODUCTION: Studies have found that people with Multiple Sclerosis experience relatively high rates of anxiety and depression. Although methodologically robust, many of these studies had access to only modest sample 
27 Jun 2012
The Hospital Anxiety and Depression Scale (HADS) was used to measure anxiety (cut-point >7) and depression (>7) and the Fatigue Severity Scale (FSS) to measure fatigue (≥5). Results: At cohort entry, prevalence of 
03 Oct 2012
Clinical data including disability (Expanded Disability Status Scale: EDSS) and depression symptoms (Hospital Anxiety and Depression Scale depression subscale: HADS-D) were recorded at 0, 2 and 6 months post-relapse.
11 Sep 2011
Background: Self-report measures of cognition have consistently been shown to correlate better with depressed mood than neuropsychological test performance in MS’ers, with few studies focusing on the role of anxiety and 
31 Jul 2012
Conclusion: These findings may alert clinicians of the high prevalence and impact of daily hassles in MS and underline the need to incorporate stress and anxiety management strategies in (psycho)therapeutic interventions.
17 Oct 2012
has NOT been concerned with MS, so the map would show family, studying, exercise, employment etc as overwhelmingly the largest elements, with a tiny percentage devoted to anxiety (around the time of diagnosis) and 

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.


  • I think neurologists have a huge responsibility, which is largely overlooked, to help make the process of diagnosis as least likely to cause PTSD as possibe. In my experience, neuros seem to fall into one of two categories – patronisingly reassuring ("MS? Pah – it's nothing these days, you'll be fine; don't worry about treatment until it gets really bad") or depressingly pessemistic ("here's a guide to MS – with a big wheelchair on the front etc – which DMT do you want first?").

    For example, Prof G, even in the post above calls it a "chronic, lifelong, disabling condition" whereas surely "chronic, lifelong, POTENTIALLY disabling" condition is more accurate. That's not semantics – it is a vital part of the diagnosis message. Yes, you need to take this seriously and be aware of all possible outcomes and therefore make an informed decision on treatment but, with or without treatment, you might well be fine and disability/major life change is not inevitable (at least not in terms of how most people think of 'being disabled'). I was watching Clay Walker (US country star – diagnosed 16 years ago) on TV the other day; no-one would think of him as 'disabled'. Same goes for Ann Romney as a 'topical' transatlantic example. These are not extreme examples, many, many people with MS continue to be mobile, work, be active etc (including, of course, those with disability as well). If that message was more clearly given (along with details of the most recent natural history studies showing an average time to EDSS of closer to 30 years than the oft-quoted 15, and examples like the MS curve showing 25% of all MSers still under EDSS 2 by 20 years) then I think the incidence of PTSD post-diagnosis would be lessened as people wouldn't come away with a general image of the condition that is actually representative of only the worst sufferers.

    • I agree; but we need to be able to recognise those who may have a relatively good prognosis at the outset. It is not always easy. We are looking after an MSers at the Royal London who had benign MS; fully functional with last attack 10 years ago. She was admitted with a severe spinal cord relapse and is now in needs of a wheelchair; her brain activity has left her severely cognitively impaired. The question I ask if she had been on a DMT would the DMT have prevented the devastating cluster of lesions that has left her so disabled?

    • During active duty abandoned denied emergency treatment. A virus made worse the environment heat stress, I experienced near death trauma, mental conditions. I was denied treatment and rehabilitation called an unstable personality problem. Now is than PTSD or MS or both? I have suffered ongoing and reoccurring symptoms since I was 19..

  • I realised in hindsight, whilst listening to a radio programme about PTSD, that I had experienced many of the symptoms. It helped because I was able to acknowledge the huge and unexpected shock of the potential diagnosis, and that it was not surprising that I had experienced those symptoms (flashbacks to the Dr's room, anxiety etc). What implications does this have for communicating the diagnosis, or suspected/potential diagnosis?

  • Hmm what I was trying to say (as the second poster above) has been said so much more articulately by the first poster!

  • The above should have read:

    "showing an average time to EDSS6 of closer to 30 years than the oft-quoted 15"

    EDSS 6 is needing a cane (or other walking aide) for mobillity.

  • I agree, it took me ages to realise (for myself) that 'post 1' can be the picture, having genuine hope is really important, it's not necissarily really bad in every case, I can hope that I will do well, this is of course with the realisation that this is really very serious and there are others that do not do well, it's important to have genuine hope to do well but a realistic balance of the situation I feel.

    Like many though, I assume I got my sense of the true picture from doing my own research.

  • I agree 100% – there are those, especially progressive MSers, who have a very unfavourable course. I think the key realisiation for me was not that it was just theoretically possible to do well (which makes for rather naive 'hope') but that those who do well are NOT the exception to the rule. In fact, the average (or median) course of MS based on the most recent population studies (rather than older/hospital based ones) show that MS is not significantly disabling – at least not for decades of disease duration. If you look specifically at RRMS, the median time (i.e. the time for 50% of MSers) to need a cane is close to 30 years in the majority of recent studies. An Icelandic population study – thought to be comprehensive because of the way their healthcare system works – showed 69% of people EDSS 3.5 or below (i.e. fully mobile) after 29 years with the disease. The MSbase curve mentioned above showed it took 20 years to hit EDSS 3.5 for the population registered on that site (over 20,000 people to sample from). After a decade of MS, 50% of people were still EDSS 2 or below. Of course, in the median examples – by definition 50% will do worse but, on the ohter hand, 50% will do better, so these are not "best case" they are "average case". That's not to say that, in the 10, 20 or 30 years it takes to hit one of these milestones fatigue, cognitive issues and other symptoms etc won't cause life challenges but the image of the disease in most people's minds is one that doesn't necessarily reflect the reality. Why does this more balanced view matter? Well, it might help people avoid PTSD on diagnosis for one thing. For another, the view of MS as an inevitably seriously disabling disease helps perpetuate discrimination, most notably in the workplace. Actually, many MSer are able to continue working for many years, often until normal retirement age. Around a third are still in full-time employment after 20 years of disease – and this is total employment not a third of those who want to be in employment (i.e. MS most commonly hits women at an age when a reasonable % give up work anyway to look after children). This stat is almost certainly under-representative of those capable of working but can't because no-one will employ them, expecting them to be incapable. This is one of the reasons that only my wife, and no-one else, knows of my MS.

    Anyway, these more positive posts usually spark a flurry of "what about Jacqueline Du Pre" or other jaundiced views of the worst possible examples of MS so I'll step back and wait for the abuse! In the meantime, my message to those newly diagnosed is to learn as much as you can, read recent natural history studies (which even now still don't account for the impact of newer DMTs) rather than 'tabloid' stories of the worst examples of MS and be hopeful but not complacent. Life can be good – even if your course is not as favourable as other's – and, until that isn't actually the case, try and enjoy every moment without worrying too much about tomorrow.

  • MS is a disease that can be controlled for some sufferers, however, it remains the second most costly ailment in Europe (tumours being the first). It can be a devastating and expensive condition that renders some sufferers immobile and unable to work from a relatively young age.

    This blog has a responsibility to present all the science based evidence related to MS as well as its social impacts. Disability caused by MS must not be ignored as it happens. There are some PwMS that are so advanced that the right to die must be addressed. MS is a bad disease and remains so.

    I was in the clinic at the Walton Centre not long ago and I saw the many faces of MS sitting in one room. There were young people in wheelchairs or using crutches as well as patients that looked fine. It was a sobering experience but an important one. It will be abhorrent if a system of apartheid is introduced in MS care where disabled MSers are kept apart from non-disabled MSers on the basis it may upset the latter. Such a thing will be unacceptable.

    SPMSers were RRMSers once upon a time. Modern DMTs are no guarantee of a cure. Until a panacea is found we must address the seriousness of MS.

    • The problem with MS is that most of the early disability is hidden and we don't test for it! 30-50% of CISers; i.e. 1st attack, already have significant cognitive impairment when tested formally. We tend to view MS from the perspective of the EDSS (walking); a lot of MSers are disabled and can still walk. Why are 50% of MSers unemployed 8-10 years after diagnosis? The harsh reality is that we don't have easy ways of measuring the impact of MS on cognition.

  • I don't disagree with any of the above. However, there is an immediate thought amongst many when newly diagnosed (myself included) that MS = disability = miserable life. Neither of those things are necessarily true (although, I accept, they can be): MS does not necessarily equal disability and, for that matter, disability does not necessarily equal a lesser life either. I don't think enough is done to highlight this and it leads to a lot of extreme anxiety, as we see here. There are MSers I know whose worst symptom at present is actually the anxiety of what MS might do to them in the future. That is a major symptom of MS that doesn't need pharma to help, just education and a balanced view of the disease presented. When I first heard I might have MS, I knew nothing about it and just presumed I was going to be seriously disabled – despite having no disability on diagnosis. My wife and I cried for days and I worried non-stop for months – I was going to have to give up work, sell our house, wouldn't be able to go on holiday or play with my kids etc. My neuro did NOTHING to help present a more balanced view of things (and the MS sites didn't help a huge amount either). None of that actually happened and I am still without any disability, working and, yes, playing with kids, many years on. If someone had sat me down and said, for example, not anecdotally but research based, it takes on average (depending on the study) around 25-35 years to need a cane to walk and many people never lose mobility at all – I can't tell you how that one small piece of information about the potentially mild courses of the disease would have changed my life in that first year. Instead, I had to find out these things myself by searching various academic sites etc. I think neuros need to present BOTH sides of the disease better than is done at present.

    • Thanks for this; I agree. I think I know enough about prognostic factors to divide MSers into four categories at diagnosis or baseline when I see them initially:

      1. mild disease – most likely to end-up with benign disease if left to run natural course.

      2. active disease – unlikely to end-up with benign MS if left to run natural course; needs DMTs to have a chance of ending up with benign disease.

      3. highly-active disease, with or without disability that may be reversible – will not end-up with benign disease; needs aggressive therapy to prevent, slow or reverse the acquisition of disability.

      4. highly-active disease with significant irreversible disability – already has disability and therefore is by definition non-benign; aim of DMTs is to slow or prevent further acquisition of disability.

    • The challenge for me and other neurologists is how to break this news in away that gives hope! I will work on it.

    • How, at diagnosis or baseline, do you distinguish between 'mild' and 'active' in your list above? Doesn't 'active' require serial MRIs in order to distinguish from mild? Can't active be mild i.e. they are not mutually exclusive – I can have ongoing relapses/lesion formation (acive) but – either due to better than average remyelination or due to it being only a mild inflammatory response/slight degreee of demyelination occuring – my symptoms are very minor (mild)?

    • Active = recent relapses (last 24 months) or recent evidence of MRI activity (new lesions or Gd-enhancing lesions). If there are Gd-enhancing lesions these are considered active and therefore you don't require serial scans. For an increase in the T2 lesion load you require serial scans.

      Regarding remyelinating lesions; there are new techniques for assessing this in individual lesions that can assess remyelination. This is called MTR; we have posted on this in the past.

  • My neuro and my second opinion neuro (one young hard-working guy just starting out and the other a seasoned MS doctor at a research hospital) both were very balanced in their talks with me. Their strong message was that I would probably do pretty good over time, but they wanted me on a CRAB because there are no guarantees. Because I read this blog, and others, I asked whether Tysabri wouldn't be better in the long run. They both insisted that I was in no way a candidate for something that strong.

    Nevertheless, I managed to give myself a good case of PTSD, says my psychologist. And I'm still not recovered…it takes a while. So, I'm not sure what my doctors could have done or said different. They couldn't have covered up the fact that 5 years ago a college roommate died in her 40s from the disease. Or that a close friend of the family, just a few years older than me, now lives in a nursing home with just about no limbs or systems working, to say nothing of her cognitive issues.

    I have found it helpful to talk to people with MS who are older. Before my diagnosis, I didn't realize there were so many people with MS out there who were doing fine. I have finally met enough of them now that I'm starting to believe it's not all that unusual.

    But I'm still freaked out.

    • The problem with benign MS is that it is difficult to call up front. I have seen too many mistakes. The improvement in prognosis of MS may be driven by the emergence of DMTs and other factors. The aim is to make everybody have benign MS. MSers need to be aware of this. Apologies for being too pessimistic about the prognosis; it is a selection bias. I simply get referred too many young MSers with aggressive disease. For example, I saw a patient on the ward this evening who may have MS with first attack in 2010; she is currently bed bound.

    • Within 24 months of her first attack she is now bed bound?!

      And the DMT Mafia don't want to hear about such accounts because they believe that MS is now totally treatable because of modern DMTs. We need to hear all sides, the good and the bad. We need realism, not make-believe. That is what this blog must provide. MS can be a very bad disease and, in some cases, not very bad at all.

    • Truth About MS is so wrong. I haven't just heard about such accounts, I actually knew somebody who was bedbound very early. That is why I welcome DMTs: anything to reduce or delay the possibility of such an outcome

    • As mentioned on another post, where this was mentioned today..we did the Health Ranger post on drugs and guns a week or two ago.

      In the UK we do not have many guns and so it it obvious..haven't you seen them (doctors) driving:-)

  • Great.. This is amazing. Thank you so much for sharing. I really hope that it helps you as much as it helps me, hang in there.

By Prof G



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