Research: giving the diagnosis of MS

Epub: Martinelli et al. Disclosing the diagnosis of multiple sclerosis: The Profile Project. J Neurol. 2012 May 26.

Communicating the diagnosis of MS is a challenging task, often undertaken with discomfort by most neurologists. Only a few studies have investigated MSers satisfaction with timing and way of receiving the diagnosis, but surveys regarding physicians’ attitude towards diagnosis disclosure are even more limited. The goal of this work was to highlight Italian neurologists’ behavioral and emotional approach to MSers, making them sensitive to their difficulties and to the importance of an empathic relationship. The majority of Italian neurologists participating in this study have a good perception of their ability to manage this difficult communicating process and believe in the great effect this moment may have on a life-long disease experience. Improving communication skills may help the therapeutic alliance, enhancing MSers acceptance of the disease, as well as motivation and adherence to treatment disclosing the diagnosis of multiple sclerosis.

“An interesting article. From experience of talking to many MSers is that their experiences vary wildly. Some have had good experiences and others very poor. What has yours been?”

12 thoughts on “Research: giving the diagnosis of MS”

  1. Anon saidI went to *** ******* a couple of years ago – pins and needles in both legs.Dr. ***** told me to go home and that all is OK.Few weeks later – I had to go to Moorfield's eye hospital as I couldn't see.After 3 weeks of diagnostics – they asked for an MRI: surprise surprise, white spots all over the place.I rushed back to *** without an appointment and stormed into Dr. *****'s office quizzing him on his diagnostic.After moments of hesitation, he lashed out at me saying that I have MS and that HE HAD DID NOT GIVE THE DIAGNOSIS AT THE TIME TO AVOID STRESSING THE HELL OUT OF ME.It took me 4 month to analyse the ethics behind his decision making. Until I figured out that he had no right to withhold this info from me – especially now that all studies are converging to aggressive early treatment.I fired him shortly after.I admit lots of respect to the neuro around me but a big part of me wants to sue him."NO NAMES PLEASE".THIS NOT ABOUT NAME AND SHAME, expecially when you do not identify yourself.

  2. You might say I was diagnosed in the Pleistocene Age since the only diagnostic tools then were clinical history and spinal taps. I was in graduate school and woke up with the lower half of my body completely numb. I went to student health, was examined , given a spinal tap (I did not know for what but it apparently did not show what they were looking for), and sent home without a word; I, left wondering what on earth had just happened to me. Luckily, the numbness went away on its own. Three years later, I developed coordination problems with my hands, saw a new neurologist who very matter of fact informed me that he thought I might have MS. I, not knowing what MS was, nodded back very matter of fact. He then explained in the same tone what MS was. I listened quietly as he explained. I walked out of his office to schedule going into hospital for another spinal tap. As I was speaking to the scheduler, I burst into sobs. No comforting angels descended. The spinal tap showed the requisite markers, but my disease remitted and I lived a quite normal life for about fifteen years. Then, on a routine progress visit, this time with a different neurologist, she informed me that I should be on DMDs. Given my relatively benign history, I resisted, whereupon she said, “Well, don’t come back to me when you are crawling on the ground.” Three different neurologists, three different experiences, but they all shared one thing, deficient emotional IQ. I realize MS is a difficult disease to diagnose and treat, but there is no excuse for lacking sensitivity in how the diagnosis and treatment of this terrible disease are communicated. My neurologist now, thank the heavens, is both competent and emotionally attuned, a great man I actually look forward to visiting.

  3. I had an ok diagnosis experience in that it was straight forward, but thankfully NOT too clinical and detached! My neuro looked me in the eye and crucially stayed with me as I my world suffered a nuclear implosion and I crumpled metaphorically before his eyes. He answered all my questions about life expectancy and the increased risk to my very young children (two and a half and four) very clearly. My neuro has always been very clear and very human – v important! I realise I have been extremely fortunate.I have heard other not so good experiences such as that of a young mother in her mid-twenties hearing the diagnosis casually thrown out into the room with very little eye contact or explanation. The neuro then started to talk to the student in the room (in a training hospital) about this young women and her diagnosis. She told me that she felt incredibly isolated, unsupported and frightened. Uggh, it just makes me want to weep! I think this is outrageous. Come on you neuros, sort it out! I don't want you sobbing all over the place, but get with it, this is probably the worst piece of news the patient is ever going to hear. They're not simply a mass of cells with a hospital number attached to them. Generally you seem a bright lot, but some of you need to hone up on the personal skills. The lack of psychological support around diagnosis of such an alarming condition such as MS is abysmal. Neuros! Please go and put a lab coat on and meddle about with cells if you can't interact with more than a fair dose of respect and kindness to a patient. I get that it must be hard to impart such news, but if you do find it hard, surely there must be some courses in the NHS you can attend or better still imagine the human being standing before you is someone you care for …. alot!

  4. My experience was as good as it possibly good have been. I had been diagnosed with BPPV at a clinic while traveling. I returned home and saw a physical therapist who specialized in balance and dizziness. She said she didn't think I had BPPV at all and that she wanted me to see a good neurologist. She did all the work, made all the contacts, and within days I'd had MRIs and was sitting in the office of a young Pakistani neurologist who had started just the week before at my local hospital. He brought up my MRI's, gave me a neuro exam, and said, "I have something interesting to tell you…"I like that he used the word "interesting" rather than "devastating" or "unfortunate." He delivered the diagnosis and touched me a lot as he explained I wasn't going to die from this and I might be okay for a very long time.He scheduled a 1-hour+ appointment with me for a week later to answer all my questions. Then he put me in the hospital for steroids and visits from all the other professionals he could get…psychiatrist, physical therapist, nutritionist, swallow/speech. He visited every day and answered all my questions again and again. He even told me he prays for all his patients, and that made me feel better without even knowing which God he's signed up for.He was not an MS specialist and he supported me when I said I wanted to go elsewhere to talk to a specialist (I live in a remote and empty state in the middle of the United States). But after seeing the experts out in Oregon (OHSU), I gladly returned to my neuro. I'm devastated still by my diagnoses 6 months ago, but I couldn't ask for a braver and more caring neurologist and support staff.

  5. Hmm well I've had a few different experiences , like some of your other posters. A bad experience was being sent home with no understanding of what the condition was and thinking that I would be dead within a year. One additional reassuring sentence could've saved me a huge amount of anxiety. Years later I was told 'most people manage well' and that has stayed with me and as it happens, turns out to be true. Another gem was: 'it must be like the sword of damocles hanging over you' I mean come on, where is your humanity, empathy or common sense??

  6. I was told by my neuroopthamologist on the telephone that I had MS while I was standing in the MRI waiting room, surrounded by strangers. I will never forgive him for his callous behavior. The next day was worse, when he rushed me to the head of the MS center at a hospital that will remain nameless in NY. I had a no-fault divorce from both these doctors and their hospital. I am now living in Israel where I receive excellent and sympathetic care at the MS center at Tel HaShomer hospital. Liz

  7. I remember that I felt very relieved that I did not have a brain tumour nor variant creutzfeldt-jakob disease just possible MS.

  8. Different things suit different people. I'm glad I managed to read the MRI report alone before anybody could break the news.

  9. Our son's neurologist gave us a long time to ask questions, and I'd already looked into MS as I had a sneaky suspicion that's what it was. I asked him about Campath, and said I'd heard that one person had died on the study. He said lots of people had died from using Campath (probably those who had chronic leukaemia was what he meant I reckon now) and when I asked about whether he should take extra vitamins like Vit D I was told no, just a healthy diet. This was 4 years ago, and he was one of the top doctors at a neurological centre.

  10. Hello,In 1995 I had a series of appointments with a neurologist after a referral from my GP because I had double vision. Over a number of months I had a series of appointments and the neurologist always asked if my symptoms were getting worse. They were not so obviously I did not have a brain tumour but no further information was ever given to me, this did nothing to boost my self confidence,Eventually I was sent for an MRI scan. At the follow up appointment I was simply told that I had multiple sclerosis. No further explanation and he would see me again in a few months time.At the time I had never heard of MS and no attempt was made by that neurologist to explain anything about the illness or problems. Shortly afterwards I moved to a new neurologist, I thought the 'bedside manner' and sympathy with the patient (me) of the original neurologist was appalling. I was told that on one occasion the wife had been diagnosed with MS but he broke the news to the husband while the wife was outside. I recently heard that this neurologist is still working with MSers and nothing has changed!

  11. My neuro at the time did a good job, but I suspected sometime before hand what the dx would be. I was told in the office the probable dx with plenty of Q & A and then confirmed over the phone after the MRI. He was cautiously optimist w/ early treatment I could do well and mangage though, no promises.However, looking back, I am not sure I broke the news in best possible way to my father. I remember telling him in the office and not realizing that he had to take some time to deal and process (I was just concerned with the logistics of the MRI and lumbar puncture, and choosing medication)and the reality sunk in as I saw the reaction of everyone I needed to tell. I know the neuro's are busy, need to break the news to different patients w/ different personalities and so I am hesitant to add a new responsibility but some counseling on how a Pw/MS could break the news to friends or family would be helpful.

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