The power of an MS diagnosis

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How did you feel before you received your MS diagnosis? How did you feel when you got your MS diagnosis? Maybe you’re still waiting for a diagnosis to explain your symptoms. 

Prof G recently blogged about an article where patients were misdiagnosed with MS. Even with diagnostic tests available, it can still be difficult to diagnose MS, and clinicians can still sometimes get it wrong. Unfortunately, for those with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) there is no definitive diagnostic test for their illness. 

In this study, Lacerda et. al (2018) looked at the views of one group of people with ME/CFS and a separate group with MS on research findings by CureME. Some participants with MS shared their experiences about being disbelieved and judged by doctors, employers, friends, and family pre-diagnosis, who felt that they were inventing or exaggerating symptoms. They reported that they only felt accepted once they had a confirmed diagnosis. 

Common themes were that healthcare professionals need to be thoughtful about how they care for people with unclear/uncertain/delayed/mis- diagnoses, and for people who are diagnosed with an illness for which there is currently no cure. They should treat peoples’ accounts as trustworthy, with compassion and validation. 

Participants also expressed it was important for research teams to work collaboratively rather than competitively. New research knowledge should focus on fitting into a larger “jigsaw” and less on finding “breakthrough” discoveries. 

Participants described getting a definitive diagnosis as a sense of relief, validation, restored social acceptance and ability to access support. Here’s how some of them described how they felt after receiving their diagnoses:

“Oh, thank God for that. Now I can move on.” 

“I think for me, to actually be diagnosed was the biggest kick in the teeth I have ever, ever had.”

“It was such a relief to have that labelled and to know that I wasn’t going mad…”

“Yes, that being left in limbo, you don’t know where you are. I was told everything. “You’re just depressed. Go and get some more happy pills” and all the rest of this sort of stuff. You know something is wrong, but you’re not sure what it is.” 

Go back to before your diagnosis. Did people believe how you felt? How long did it take to get diagnosed? How many tests did you do before you could finally say, “I have MS”. What was your experience of being diagnosed?

Disclaimer: Please note that the opinions expressed here are those of the author and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

Heather Mah is a PhD researcher at the Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry at Queen Mary University London exploring the experiences of people with MS and healthcare professionals involved with Patient and Public Involvement and Engagement (PPIE).

Lacerda et. al Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study Health Expectations. 2019; 22: 373-384

PMID: 30632248 PMCID: PMC6543144 DOI: 10.1111/hex.12857

Background: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception. Aim: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities.
Method: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically.
Results: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants’ reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants’ ideas on future research; and (e) Seeking to share understanding: participants’ views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of “putting together a jigsaw” of evidence through perseverance and collaboration.
Conclusion: This study provides insight into the emotional, social and practical impor- tance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients’ voices to a call for a more collaborative research culture. 

About the author

Heather Mah

27 comments

  • I knew something wasn’t right, but hadn’t a clue what it was. In the days before my 1st MRI scan, I had worked myself up to having an inoperable brain tumour etc. To be told post-MRI, that I had MS, something that I’d vaguely heard about, something that I believed was not fatal in itself, well my biggest initial feeling was relief. That was back in 2001. I continue to live the reality of MS, but with a lot more knowledge.

    My Neuro team have been great throughout. I was started on Beta-interferon within weeks of being diagnosed, and as I’ve gotten worse/new DMT’s have been licenced, I’ve been given access to those new DMT’s. The progress of the disease caught up with me slowly and I’ve been wheelchair living since 2018 with an 8.0 on the EDSS scale.

  • I’m supporting a friend at the moment who has been told she has “something neurological and degenerative, like MS”. She has been in hospital but is back home now. She is unable to work at the moment but without a diagnosis cannot access disability benefits. She has an appointment with a neurologist next month.

    Things were fast tracked a little this week as the current working theory is a possible brain tumour, so she was able to have an MRI scan yesterday evening.

    I want to tell her this limbo is the worst part but I haven’t because while that was true for me it may not be the case for her at all. All I can do is answer her questions (“how long did it take to get a diagnosis?” “YEARS”) and encourage her to continue to be proactive about seeking help, not an easy thing to do when you have trouble completing the most basic everyday tasks.

    When my first MRI came back positive I was very upset and told a friend “I’d rather have a brain tumour”. She gently told me I really wouldn’t. I do have a friend who recovered from a brain tumour – with lasting effects, he also had a stroke but he has a very good job and is doing well. Now this friend is saying the same. If it is MS, the diagnosis will be PPMS. Would a brain tumour be better? There’s no way of knowing.

    • I hope your friend is able to get a diagnosis soon, it sounds like you have been a great support to her though her journey.

  • “Participants described getting a definitive diagnosis as a sense of relief, validation, restored social acceptance and ability to access support. Here’s how some of them described how they felt after receiving their diagnoses:

    “Oh, thank God for that. Now I can move on.”

    I suspect patients who feel this way eg sense of relief had / have no idea of what MS is and what it does.

    The MS Trust is posting a different story every day about the impact MS has on patients and there families. This particular story (earlier this week) made me very sad:

    https://mstrust.org.uk/news/views-and-comments/i-made-my-husband-a-hydration-station-during-lockdown

    Today’s story is about a 12 year old girl whose dad with MS lives in a care home!

    MS is a bastard, insidious disease. If I was an MSologist I’d hold my head in shame that MS is having such an horrific impact in this day and age.

    Diagnosis for many is akin to signing someone’s death warrant. Some get a slightly easier ride, but after 15-20 years most MSers will have accrued substantial disabilities and their lives will have changed for the worse. You never forget the day you were diagnosed. My neuro commented that I had taken the diagnosis “quite badly”. Perhaps seeing my aunt pass away at 48 from MS played a part!

    PS forgive the angry tone, but this week’s stories on the MS Trust website are as heartbreaking as they get. Makes you wonder how much progress has really been made in tackling this disease.

  • I had all the tests in 1999, but they were inconclusive. I had an MRI in September 2003. Then nothing. Ten months later, after a very, very busy time, I rang neurology to ask for my result as I was emigrating.
    “Ah. We can’t give them to you.”
    “Why? It’s June 2004 and you must have a result.”
    “Well, The thing is we’ve lost your file”
    “Right. I’m gong to maxfax (Maxillo Facial) tomorrow. Shall I see if they have them?”
    “Oh that would be helpful, yes please.”

    Next day at my appointment with the HOD maxfax, I asked him of he had my notes.
    “Yes. They’re here,” pointing to them on the desk.
    “When you’re finished with them, would you pass them to neurology ?`’

    I got my diagnosis in September 2004, one month before I emigrated.

    • Thanks for sharing your experience of getting a diagnosis at the same time you emigrated. Sorry to hear about the admin delay.

  • Sometimes ignorance is bliss … but, with hindsight, if only someone has forced me to get it, really get it, forced me to force them to say out loud that they thought it was MS, and then held my hand and told me yes, it’s awful, there will be tough times ahead, there is no cure, but, but, but, there will be teams of teams of people who know how they can make it bearable and better than it will be, but it will get worse and worse, but they will help.
    And you don’t have to think there’s no point in living, that you should kill yourself because you’ve failed yourself, your hopeful parents, your admiring boyfriend, your carefree friends in not living successfully, happily, and healthily. And you don’t have to refuse to really, really think about it and then live life not scared but informed, pragmatically and hopeful.
    I did ok in the end, lived a good life, made (mostly) good choices, but I wouldn’t have been so, so, SO scared for myself. That would’ve been nicer for my 30’s. It really would’ve been better to live not in ignorance but informed and still hopeful.
    What are doctors so scared of? How can I be not scared if they are scared? And I knew they were scared – by their shifty eyes, their hesitant manner, their careful chosen, few words and their eagerness to show me the door.

    • Thanks for sharing Tanweena, hopefully healthcare professionals are getting better at communicating these messages to people.

  • I was believed but i probably underestimated my symptoms, not wanting to waste my GP’s time
    In London i’ve always had the most amazing GPs, i’m lucky. Some stories of others are awful!
    Diagnosis was years. Like others i was told brain tumour or ruptured aneurysm initially after my first neurological A&E incident. Mmm fun times. CT scan – then oh it’s nothing.. no suspicions or mention of MS at all. I guess they believed my symptoms but i wasn’t treated very kindly. Was very anxious for months after that. Then years pass by… ignorant to my brain volume loss hehe – till the next symptom. Same as most.
    Actually being told you have it even if you eventually do expect it/know it? Still felt like a physical punch in the stomach. That surprised me that it felt so physical hearing those words! Never had that feeling before.
    Doesn’t feel real for a while. Most stressful part? Starting a DMT, the ‘Unknown’.
    Reality? Almost 2 years later it still seems a bit of a ‘concept’ to me, having MS. But it doesn’t affect me badly like others.
    I think once you can deal/be comfortable with living with uncertainty (therapy for all!!!) you’ve kinda cracked having some sort of mental health stability with all of this.. MS or not.

  • I must say this study is a fair representation of my experiences, thoughts, and suggestions. I particularly agree with the conclusion statement around the need for a more collaborative research process and approach to treating pwms.

    “Common themes were that healthcare professionals need to be thoughtful about how they care for for people who are diagnosed with an illness for which there is currently no cure. They should treat peoples’ accounts as trustworthy, with compassion and validation”……..100% agree!

    I can see from the comments you have had the pleasure of meeting Sid…..so welcome to the blog 😉

  • I got diagnosed more or less ‘by accident’. True, I had a numbness in my legs, but that was something I had for decades, and it always came and went away, so I was used to that and it didn’t bother me. Having the diagnosis of MS certainly did not feel as a relief. Suddenly, I have this serious disease, I’m put on medication with lots of side-effects (because ‘early’ treatment is important – said the neurologist without irony), and I completely lost the carefree way of life healthy people have.
    I still struggle to see in what way the diagnosis of MS has brought me anything usefull, and I’m mostly grateful for every year I was ignorant and could just dismiss little symptoms as ‘just something that I have’. Now I know it’s MS, and it will in all probability just get worse. Good to know…

  • From my first relapse (which was carefully examined and documented), it was pretty clear to all concerned, me included, what the prime suspect was. No one doubted me or told me it was mad or making it up. A few months later the second relapse arrived, soon followed by an RRMS dx All done and dusted in about 6 months. I know now that I was lucky to be a straightforward case. I would not have dealt well with being told it was all imagination. I really feel for people who spend years in that position.

    • Thanks for sharing Andromache, I’m glad to hear you were believed and that it didn’t take years for you to get a diagnosis.

  • My diagnosis took over 2 years from first symptoms and 18 months from first seeing a consultant. The consultant had spent every appointment telling me not to assume anything or read any information on MS etc as he was tired of people doing that and assuming that was what they had. and I shouldn’t be silly and do that.
    Then the day of my diagnosis he told me I had MS, and that an MS nurse would maybe me but sadly they had an other appointment and that they’d usually give me a leaflet but they’d run out. Then he said goodbye, I’ll see you in a year.
    The relief at having a diagnosis was matched by the shock and frustration and having many questions and no-one to ask. A year is a long time to wait to ask questions and to live with new symptoms etc and not see anyone as it was clear I wasn’t to bother him.
    10 years on and I’m still floating around the system with no support, gradually worsening and my only hope is one day I’ll be bad enough for someone to help but until then I’ll fall through the gaps.
    How you receive your diagnosis is so important and sets you up for the rest of your experience of MS

    • Thanks for sharing JPLON, I’m sorry you didn’t get any support when you received your diagnosis.

  • I was believed by my GPs, I just had such non-specific random symptoms (exhaustion, vague lac of balance, brain fog) that it took a while, multiple blood tests (all pretty much said I was amazingly healthy), referrals to haematologist, allergist and finally neuro. Took about 6 months but finally had MRI, and got potential diagnosis (surprise to neuro, but not so much to me by that time), I still think MS is probably better than brain tumour or the other alternative of ALS, so to me MS seemed OK. At least I wasn’t crazy! Took another 8 months before poison of choice (Cladribine) was available and had LP in the meantime to confirm diagnosis. Clad seems to have worked pretty well, feel better, not 100%, but maybe 90% twelve months after second year, but still seem to be improving from an exhaustion/brain fog perspective at least.
    Better than a friend who at the time of her diagnoses was doing triathlons, got taken into hospital for numbness, treated with steroids and then at her first neuro appointment was asked if she had registered for disability support….. she is still doing triathlons 3 years later.

    • I’m glad you are not one of the long-delay tales of woe and that you’re still doing mostly well. When I finally had my first attack, I got a quick diagnosis too, in about 2 months. Blazingly fast for this beast. And isn’t it interesting how relieved we all seem to be that we “aren’t crazy”. It certainly speaks to how often we encounter that attituded, that we are (rightly) worried about it all the time, doesn’t it?

      Yes, I realize that MS can look a lot like ALS at a point, but you are absolutely correct: of those two crappy diagnoses, it is by far, the least crappy. At least with MS there are treatments and a (usually) much longer period before things become dire, if indeed they ever do. I watched my mother leave me in 2 years due to very late onset bulbar ALS (she refused a feeding tube, and died at 71), and I can tell you, my relief at my diagnosis being ONLY MS, was pretty intense. ALS is just the worst.

  • I didn’t have to be told (although I was later) I KNEW (I know that makes eyes roll, but I did) when the GP called me back after my MRI and almost barked at me, “They found a couple of spots on your MRI. You’ll need to go have one with contrast. I’ll set it up.” Click. I was at work, and I just sat there, put my head on my desk, and said to myself, “OMG, I have MS…”. Back then I knew some about MS because I knew 2 people who had it, but I never ever considered it for myself. Of course, when I was definitively diagnosed, I did feel a sense of relief, because a lot of strange little things (and some not so little) clicked into place.

    I realize that most pwms are dx’d much earlier than I, I was dx’d at 52. I also had had several significant unrelated health issues prior, so my perspective on my invulnerability had already suffered a few body blows, making my reaction probably a bit different. Being on the other side of 50, at least I didn’t have to stare down the grim prospect of the prime part of my life with MS (although for part of that I now know I had it of course). Overall, I’m glad I found out, but glad I didn’t find out earlier. It would have done a job on my outlook. It wasn’t exactly peachy finding out after 50, but at least I had a bit of life experience to lean on.

    (disclaimer: I’m in the US, so you decide how much of this applies in the UK. It’s pretty bad here)

    And now I MUST comment on this statement from the piece:

    “Some participants with MS shared their experiences about being disbelieved and judged by doctors, employers, friends, and family pre-diagnosis, who felt that they were inventing or exaggerating symptoms.”

    And docs wonder why patients often stay away as long as possible? Why young people can’t seem to see that getting diagnosed early on treatment right NOW is better for them as we read all the time? Unfortunately, many of us know quite well that the chance is pretty high of us being disbelieved and told we’re “just” (my favorite enraging word) stressed/hormonal/anxious/not having enough sex with our husbands/overweight/have conversion disorder/etc ad nauseam. The list of subtle and not-so-subtle dismissals is long and the chance of being labeled as mental and having an antidepressant pushed on you (GPs just love to pass those out) is quite high. If the symptoms are bearable then the risk/reward calculation often comes down on the side of stay away from doctors.

    Here is an excerpt from this Atlantic article on long-haul covid, which may turn out to be the catalyst, finally, that finally makes docs get a clue about invisible symptoms. Maybe. The medical profession does seem quite resistant to self-reflection, IMO. We shall see.

    https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/?utm_source=newsletter&utm_medium=email&utm_campaign=atlantic-daily-newsletter&utm_content=20210308&silverid-ref=NzExMzE0MzMzNDcyS0

    ‘….but also because when patient groups began calling attention to it, they were reaching out to clinicians who were primed to listen. After all, many of those who first reported the experience of relapses and persistent trouble are doctors, like Jessica Cohen. Another such doctor is Dayna McCarthy, who struggles with long-COVID symptoms. “These are doctors that we work alongside,” Chen told me. “And we know that these aren’t patients that are faking it. If my fellow doctor, whom I work with closely, is telling me that they can’t get through the day because they can’t think straight, I’m going to believe that.”

    In these places—most notably, Mount Sinai, UC San Francisco’s post-COVID center, and Johns Hopkins—the people treating long-haulers were already champions of thinking in new ways about chronic illness. Amy Kontorovich, for instance, has been treating dysautonomia patients for almost a decade, and she’s become passionate about advocating for patients whose conditions are dismissed. “Most of my patients were young women between the ages of 20 and 45. And the story was often one of a long diagnostic journey,” Kontorovich told me. “Patients had been told symptoms were in their head or purely due to anxiety.” Her patients epitomize the kind whom the medical system frequently fails—by contesting the reality of their illness, sending them from specialist to specialist, loading them up with drugs without getting to the root cause.’

    While I am thrilled to read that some corners of doctoring are starting to get a clue, the comment about faking is about as offensively revealing as something can be. A doctor FINALLY believes the symptoms being reported because they are being reported by another doctor, you know, the better sort of people. Patients, on the other hand, are obviously always suspected of overstating things or “faking it”. Wow. There the attitude is, stated quite unselfconsciously. Sadly, this attitude suffuses the medical profession still. And when is this bias against mostly women (let’s be clear here, they danced around it in my quote above, but that is the gender that is on the receiving end of most of this nonsense) as being untrustworthy people and fakers, going to stop being an endless trope? MS forums are just bulging with these tales, of diagnostic delay due to docs not believing their patients, and the relief felt at diagnosis, the relief of no longer being disbelieved and subtly blamed for their own condition. Heather Mah, if you need more stories than you’re getting here, I suggest reading a few MS patient support forums. You’ll find quite a few there.

By Heather Mah

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