Since finding this site I have found many articles to be most interesting. The people who run it are actively trying to access as many people as possible to enlighten us about all things MS related at the same time as inviting our opinions.. I thank you all for the time you put in, much of it, I suspect is your own ‘free’ time.
Dr Mouse,There are some things I don't like about you - long hair, follower of Heavy Metal, killer of helpless mice. However, I respect diversity. The anger on the site just reflects the frustration at the lack of treatments for progressive MS - it's not personal.As an incentive for getting an effective treatment from your research, I will offer a year's supply of real ale and 25 Status Quo t-shirts.Best wishes.
If neurologists listened a bit more to their patients they wouldn't need thick skins. Can you begin to imagine the frustration, disappointment, anger, sadness and stress caused by going to see a neurologist for MS. In my experience this is what happens: I wait 9 or so months for an appointment, and go hoping to talk about what is happening in my crumbling body and have some questions answered about MS as a condition. What actually happens is that I'm in and out the door in 5 minutes after being told to just 'grin and bear it'. Great. (This is a head neurologist at one of the big London hospitals... ) I've found the only way to deal with neurologists is to expect nothing then I won't be disappointed. Sad but true.
Completely agree with the above post. Many neurological conditions such as MS are progressive, have no cure and may eventually require palliative care. The oncologist who deal with cancer are experts in conditions which fulfill the same criteria. They, however, are expert at breaking bad news and communicating with patiens expertly - it's about time neuologists learnt the art of effective communication from their oncology colleagues.
Lager Please and Forget the Quo....it's Maiden/Metallica The first trial on progressive MS started two years ago....results next year.The second trial about to go, results next year.and in addition.....best wait for that to be announced. Its not my place to say anything.
"Dissing your Neurologist."I have no problem with you using the blog to diss or knock your neurologist. I is clear that a lot of you are very frustrated with the current status quo. However, to make this a constructive exercise it would helpful if we could have some additional suggestions on how to improve the relationship between MS'ers and Neurologists. The point on learning from oncologists about breaking bad news is taken. This is something that is now being formally taught as part of the specialist training programme. Thanks
Some suggestions for improving the relationship between neuros and patients:i. not telling patient they have taken the diagnosis badly (when it is a bad disease to get). Happened to me at second appointment.ii. not putting MRI images on the light boards and pointing out the areas of damage.iii. not telling newly diagnosed patient that many people never need a wheelchair, when the patient has sat in the waiting room surrounded by those in wheelchairs.iv. admitting that it is a bad disease, but that progress ahs been made and future treatments in the pipeline should be more effective than current treatments (combination of honesty and hope).v. stop devolving decisions. It is badged as choice, but I want my neuro to steer me. vi. no more bland statements such as "likely to be a cure in the next decade" or "stem cells show such promise".vii. being willing to answere honestly the question "what would you do if it was your loved one". Would you really just prescribe an injectible!viii. stop palming all the difficult stuff to the MS nurse.ix. remember we are humans not case studies (a trainee attended one of my appointments, and the neuro talked as if I wasn't in the room).x. ask the patient what scares them most abotut he disease (I was never asked by the neuro).xi. my diagnosis was all a bit pessimistic "you've got MS, treatments aren't that effective, we can think about inter-feron when you have your second attack". xii. neuros needs to get into a postion where some patients have their disease halted / reversed (a bit). Oncologists get some patients better, extend the lives of others , and lose some. But the sense you get (from experience with other family members) is that they try their best and give you the best shot. When my grandmother dies, my father still shook the hand of the oncologist and thanked him for all his efforts. With neuros it's all so grim - MND "2-5 years at best, nothing we can do", progressive ms "not much we can do".... Once neuros start really changing the future for people with MS (including progressive MS) the relationship with patients will be unrecognisable from what it is today. Giving back a future to a patient is surely the main reason why people become doctors.
Re: "Some suggestions for improving the relationship between neuros and patients"Dear AnonymousAre you in or out of the closet? If you are out of the MS closet and prepared to "walk the talk" you can make a difference. We run an annual MS Training Day for Neurology Specialist Registrars; I am prepared to lobby for you to have a teaching slot on the next course. The only way we are going to get across your points and others, is for you to teach the next generation of MSologists. If you are up for it drop me an email (email@example.com).Gavin
All those comments by Anonymous, above, are very valid and I think most MS'ers would agree with them. From my experience and chatting with other MS'ers, good neuros who know their stuff and have a really good relationship/manner with their patients are few and far between. If he/she is out of the closet then I think they would make an excellent "teacher" at the MS Training Day you are talking about Prof G! If they aren't then I think there is a real scope to have an MS'er speak at something like that and I'm sure there are any number of blog readers here who would be willing to take up the challenge if you wanted them to.
As a newly diagnosed RRMS patient, I’ve already seen how a good relationship with your neurologist can help with receiving the news whether you see it as bad or otherwise. It is so important in the lead up to the diagnosis for your consultant to gauge what kind of person you are – I know this is hard as consultants are pressed for time and see hundreds of patients, but a few key scribbles on medical notes about whether you are sporty, green-fingered, a book worm etc can really help with assessing how someone will take the news they have MS. I was very lucky – my neurologist had taken the initiative to find out what kind of person I am, so even though he came in with his ‘bad news face’ on, when he saw I had taken the news well, he patiently went through the list of questions I had for him, answering them honestly and thoroughly in light of what he already knows about me. If a neuro knows that someone is sporty, they will already know their main concern for the future will be losing mobility for example. Or if they are a book worm, they will be concerned that optic neuritis may be the worst thing ever for them. The main thing to remember is that every patient is different just as the progress of their illness is different. I know I was very lucky with my neuro so now I’ve been referred to someone else, I’m waiting in trepidation to see whether my good experience continues! I also really admire Prof G’s attitude of ‘if there’s a problem, let’s do something about it and be constructive’. I like that as it is the only way to make change happen. I’m a big fan of being proactive and getting involved and it’s good to know that there are neuros out there who support that!
In addition to the previous very good comments, I keep meaning to say something on this thread and never doing it. You probably know all these things, but an awful lot of neuros don't seem to.*Placebo effectI always wonder why neuros don't try to leverage this more. Ted Kaptchuk found that IBS patients assigned to a high-interaction group where they got "sham treatment from a clinician who asked them questions about symptoms, outlined the causes of IBS, and displayed optimism about their condition. . . got as much relief as did people taking the two leading prescription drugs for IBS. And the benefits of their bogus treatment persisted for weeks afterward, contrary to the belief--widespread in the pharmaceutical industry--that the placebo response is short-lived. Studies like this open the door to hybrid treatment strategies that exploit the placebo effect to make real drugs safer and more effective." (http://www.wired.com/medtech/drugs/magazine/17-09/ff_placebo_effect?currentPage=all) Has anybody ever looked into how these kind of psychosocial interactions effect MS patients? Do the patients who feel like their neuros care and are on their side do better? Do interventions like http://brainblogger.com/2011/11/14/the-empathy-and-the-irony-plastic-disc-to-teach-empathy-to-doctors/ have any effect on patient outcome?I recently read where Fabrizio Benedetti, author of The Placebo Effect, contrasted conscious placebo effects (that rely on expectation and which he maps to what he considers conscious physiological functions, like pain and motor performance) and unconscious ones (that rely on classical conditioning and which he thinks are the only kind that effect unconscious physiological functions like the immune system) (from http://www.brainsciencepodcast.com/bsp/neurobiology-of-placebos-with-fabrizio-benedetti-bsp-77.html) So maybe the expectation-based placebo effect doesn't work on the underlying cause of MS, but could help with symptoms?*Recognize the patientI know someone who described her neuro appts as being like the movie Fifty First Dates. It got somewhat better over time, but I think many patients, including me, know the frustration of feeling like you're starting over at square one with every appt. To be fair, I don't think most people with MS think about how many patients (100's, 1000's) the typical neuro sees in a year. It would help, though, if neuros kept in mind the asymmetrical importance of any given appt to the patient compared to the neuro. My current neuro's office takes pictures of all the agreeable patients so maybe this give the neuro a shot at recalling the person behind the next appt.*Be proactive about treating symptomsThis seems to be a common theme on this blog, but most neuros don't seem to have gotten the message. If the patient doesn't complain or ask for something, they don't probe. This is perhaps just me, but I have become fatalistic about my body. When some new, unpleasant thing happens, I try to ignore it or deny it as long as possible. After all, the MS is going to do what it's going to do to me. In the ultimate sense this is true, but at a more micro level, some things could help. For example, I have benefited from physical therapy--primarily from the balance exercises, but also from getting greater insight into why certain things are happening and most recently from a PT recommending AFOs. Every time I've done PT, it's because I've asked for it. I can't understand why more neuros don't prescribe PT. The only unsolicited thing I ever got from a neuro was baclofen because I was walking like Frankenstein (which wasn't where my attention was; I was more concerned about the fact that I couldn't walk as far as I had recently been able to).Pretty much all symptomatic treatments seem to be trade-offs, but at least help the patient make an informed decision...
*Try to understand where the patient's coming fromRemember the patient doesn't have the context that you do. At first I just had a little tingling that seemed to have no discernible cause and wouldn't go away. Not much to a neuro, but I knew nothing about neurological diseases, had no idea what could cause such a thing and wondered if I was dying of some strange disease.I once complained to a neuro that due to combination of a lack of strength and coordination, I was able to clip my fingernails anymore (the answer turned out to be giant clippers with more leverage). He was totally dismissive and certainly it is a minor thing in an absolute context, but for me it symbolized the beginning of the actualization of my fears of losing the use of my hands and the concomitant loss of independence. Sometimes it helps to understand the fears lurking behind a patient's complaint.Somewhere I read (I think in Howard Weiner's book Curing MS), a neuro expressing a preference for patients with a positive attitude and acceptance of the disease process and condemning those who were angry and unaccepting. Certainly the positive patients are easier to work with and it's better for patients' mental health if they can find joy and meaning despite MS, but I thought that was a horribly unfair and arrogant attitude. It's not an easy thing to come to terms with MS and we're not all Victor Frankl. One of the hardest things about MS is that it's a moving target. Psychologists have found that people who experience a single extreme negative event like becoming paralyzed, after a period of being really emotionally down, return to something close to their baseline level of happiness. For me, it seems that every time I make peace with where I'm at and think, okay, I can live with this, the MS starts to get worse again. Even though I've been through this enough times to intellectually understand the cycle, I can't get myself in that place emotionally. Starting over: The Autobiographical Account of a Psychologist's Experience With Multiple Sclerosis by Ernest Hirsch gives a good description of this serial grieving process. Plus I have read that the organic changes that MS makes to the brain can cause depression and other emotional dysfunction--is it really fair to blame the patient for that? ...
*Listen to and believe the patientEarly on especially, I felt like I wasn't taken seriously be neuros. For several years before anything seemed to show up on the neuro exam I had balance problems such that I could not use stairs without holding on to a railing or go up and down them very quickly. I described the way that if I worked in the garden very long, I would get in a state where my legs wouldn't hold me up unless I locked my knees. I would have to plop down and rest for a while before I would have the stamina to get up and carry on for ever shorter periods of time. To the neuros, though, I seemed normal enough when I was well-rested and sitting down in the exam room.Many people who have (or think they have) MS-like symptoms are brushed off by neuros and told they have some sort of conversion disorder. Some of them presumably do have conversion disorder. Unfortunately, often there is no follow-up for this pronouncement. Rather, it seems to be a way for neuros to get rid of bothersome patients that they can't diagnose. If the patients really have a conversion disorder, shouldn't the neuros send them to someone who can help with this instead of sending them home empty-handed? Sometimes these people do see a psychiatrist who thinks they have an organic problem so they end up as a sort of ping pong ball since no doctor will own their problem.I think neuros also under-appreciate how hard it is for people who are undiagnosed to deal with something that has no name. Leaving aside the fear of the unknown, if you have functional limitations and no name, it is very hard to explain to people. Now that I can say I can't do X or I need help with Y because I have MS, people know the word (even if they don't really know what it means) and I have a socially-acceptable excuse. This is much harder to navigate without a name.*Keep up with the current consensus in the fieldNot only do a lot of neuros lack the "softer" skills described above, but they don't seem to keep up with contemporary thinking about MS. Neuros tell people all sorts of things that are not currently thought to be true or are half-truths. You need nine lesions to get dx'd with MS. Your MRI/o bands are negative so you can't possibly have MS. The spots on your brain are from aging (no matter how young you are). You're too old to get MS. You're not too badly off so let's wait and see if you get worse; then we'll consider DMDs. You've been on this DMD for a while and you're not getting worse/showing new lesions so you clearly don't need this med; let's take you off it. There is no pain in MS. Etc.A book that isn't about MS, but that I think has a lot to say about physician-patient relationships in similar situations is Melanie Thernstrom's Pain Chronicles. Of course, economic pressures are also a big obstacle to improving the relationship between doctors and patients. The other side of the coin is perhaps there are some resource out there about how to be a more effective patient?
I sometimes think that the initial diagnosis should be given by your GP who then says you've got an appointment in 2 days to see a neurologist, which would give you time to think of questions and let the initial news sink in. Sometimes people are so shocked they can't think straight there and then. However, I could kiss the feet of the neurologist who prescribed alemtuzumab for my son
See G's comments above
It's nice to see a well-worded, constructive and helpful comment like this posted. I hope that neuros find it informative in terms of a patient's point of view and helpful in honing their skills further to improve the patient experience. I also hope patients take note as this has been put across in such a considerate but clear way that (I hope) won't get neuros offside but will help the relationship develop.
Regarding being an effective patient, here are my suggestions:*Realize that ALL doctors (neuros, oncologists, GPs) are not omniscient and omnipotent beings, they are very much human. They are not perfect and they are definitely not your adversaries. In fact, starting any patient-doctor relationship with an antagonistic attitude will more than likely doom it from the start.*Doctors try to balance the need to be compassionate with their need to be objective. A doctor who is willing to be a hand-holder may strike some patients as compassionate, while other patients may find them too touch-feely for their tastes. Ask yourself: what kind of approach would be ideal for you.*Likewise, what are your expectations of the patient-doctor relationship? Do you want the doctor to steer you to the direction they think is best for you? Or do you want a relationship where you're an equal partner in decisions-making?*Of course there's no point in asking yourself these questions if you don't then TELL the doctor about your expectations. Don't wait for the doctor to take the initiative. I tell my neuro about any side-effects I may experience with a particular treatment, no matter how minor. I just want her to know that this is how the meds affect ME and MY MS. Don't want the neuro to show you your MRI scans, tell them. Same goes for having trainees sit in during your appointments. For all my medical needs, I go to hospital that's affiliated with a medical school, so I sometimes have trainees sitting in during appointments. As long as it's not during an OB/GYN appointment or a surgical procedure where I'm completely knocked out, I have no problems with it. Inform your doctors of your limitations.*Take the initiative to educate yourself on all the science-based treatments that are and may be utilized to delay progression and/or help with MS symptoms. I'm always asking my neuro about the latest research on MS treatments that I've found on reliable medical sites. *If you are experiencing some troubling symptoms, tell your doctors about them. They are not mind readers after all, and it's unfair to attack them for not being one.*Realize that you're not your doctor's only patient. There are patients who are worse off than you. I don't mind that sometimes I only meet with the MS nurse. Given that my MS is stable at the moment, I don't mind. I'd rather have my neuro dedicate more of her time to her more worse off patients than me right now.*I notice that some comments invoke psychology. Consider making a psychologist a part of your health care team. Everyone needs to vent about a doctor they feel is uncaring towards them. Talking to a psychologist is more helpful than taking the piss out of a doctor on a blog. In talking with a psychologist about your anger and fears, they can help you find ways to channel your negative emotions in more constructive directions.*Remember, you're a valuable part of the solution. If you don't think there's enough research being done in finding treatments for PPMS or SPMS, consider participating in a clinical trial. Prof G has come up with good research ideas, but he won't get funding for them if the interest in patient participation is lacking. Personally, I'm enrolled in three clinical trials and always looking for more opportunities.*Keep in mind that you're fully within your rights to end a patient-doctor relationship that you find disagreeable and/or unhelpful. Conversely, your doctor is fully within their rights to terminate a patient-doctor relationship if you insist on being given a questionable treatment that you found on the Internet and of which the risks vs. benefits are not fully known (provided that they set you up with another doctor before they drop you as a patient).
*One poster commented, "remember the patient doesn't have the context that you do." I think it's also helpful for us to remember that doctors don't have the context that we do as patients and it's our job to provide them with that context.I think it would be helpful to keep in mind the subjectivity of our experiences and expectations. I once had a patient warn me about the recently hired MS neuro at our MS clinic. Apparently, he made the mistake of telling her that her latest MRI scan showed a new lesion, despite her telling him that she had been feeling wonderful and wasn't experiencing any new symptoms. This was enough for her to write him off as a uncompassionate s.o.b. Maybe she was expecting him to give her the news in a more sympathetic manner. Personally, I have no use for sympathetic words. What I would want to know is 1) is the lesion in an area that could cause life-threatening complications and 2) what are my treatment options now that I have a new lesion. My neuro is not the touch-feely type and that's works fine with me. She knows that I value data more than anecdotes and I'm very skeptical of anything that's touted as a "miracle treatment". I need her to provide the objective role in the patient-doctor relationship as I already provide the subjective role. I need her to help keep me level-headed. And sometimes I don't like to hear what she tells me in regards to my treatment options. As much as I hate the daily injections, to quote her, "We got a foot firmly down on the neck of your MS, let's keep it that way." Given the hell me and my family went through when I was first diagnosed, I can't rightly argue against that logic. But like I said, keep in mind that this is my own personal experience. Your mileage may vary.
I agree with most of the above comments, and would like to add two things. 1. Please please please will neurologists stop diagnosing people with "mild MS." I help out on an MS forum for the newly diagnosed - a large proportion are being told that they have very mild or mild MS despite huge variation in the severity and frequency of relapses / symptoms. (One was even told benign MS despite having his first attack only two years ago!) I assume that these neurologists think they are making the diagnosis easier on the patient - they aren't! By all means explain the factors associated with prognosis, but don't raise hopes that cannot be guaranteed. 2. I am sometimes dismayed by the over-reliance on MRI. The standard NHS MRI protocols are poor. The recommended slice thickness for MS MRI is 3mm without gaps. 3T scanners are recommended. The NHS typically uses 1.5T scanners and a minimum of 5mm slices, sometimes with gaps. It is not uncommon to see slices of 8mm. The average white matter lesion size in MS is 7mm. The result? Well, here's an example: My 2011 NHS scan showed 9 lesions. My 2011 non-NHS 3T scan with 3mm slices showed 27 lesions. So, some of those patients who have clear brain MRIs? They do not have clear brains. MRI is an amazing tool, but it is a far from perfect tool, especially when utilised at less than optimum capacity. Next time you go to discharge someone or write "functional" or "conversion" on someone's medical record? Please make sure it fits with a thorough clinical examination and not just a "clear" MRI.
@ Kayell It's interesting your point number 1 as I was told exactly that by a neurologist - I was told 'good' symptoms to have and 'bad' symptoms to have, with good symptoms like sensory and optic neuritis (!) pointing to good prognosis therefore mild MS and bad symptoms such as loss of motor function pointing to a worse prognosis therefore 'aggressive MS'. Fatigue was completely ignored and I have to question whether anyone losing their vision by any degree is ever good!? He then went onto say that mild MS could warrant a wait-and-see approach without starting medication for a few years, which I believe goes against the well documented idea that an early diagnosis and early treatment improves prognosis. And I'd also wonder whether the same neurologist would have the same conversation with someone who'd got what he thought to be bad symptoms, and he told them their prognosis was poor!? (But I do know not all neuros are the same so hopefully others may take a different approach!?)
Prof G or Mouse Doctor, I wonder if you might share your thoughts on mild and/or benign MS. This is hot button topic on an MS forum I'm on where people seem to interpret it as a way for DMDs to be withheld (money saved? some neuros have a vested interest in this approach?). Plus many of the people thus labeled don't think their MS is as benign as all that.
For people to think neuros have a vested interest in withholding DMTs is unusual. It's more common to hear people say neuros have a vested interest in helping to sell more drugs
Re: "I wonder if you might share your thoughts on mild and/or benign MS."Impossible to call up front; this is a retrospective diagnosis made after having the disease 15, 25 or 30 years. In hospital-based MS populations 30% have benign MS at 15 years, 15% at 25 years and 5% at 30 years. In community or population-based studies ~45% have benign MS at 15 years. The reason for the later is that if you have benign MS you are more likely to drop-out of hospital follow-up.
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