@DominicS

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DominicS

Everyone, help please!

Hi, I really need the help of regular everyday people with MS. I am writing an application to do a Doctorate that is looking explicitly into the patient side of MS. It is at the Nuffield School of Primary Health at Oxford and is a scholarship. I have not got it yet and have two more weeks to write the research proposal part of the application WHERE I NEED YOUR HELP - PLEASE I am interested in anything you can tell me - it is all confidential and I don't need the gory details - about two things: 1 - how you feel the Doctors and Nurses helped you choose your medicine. 2 - how comfortable you feel about understanding the risks that MS poses to you and the MS drugs may pose to you. THANK YOU in advance. I am very grateful. If you don't want to write it in public then send me a Friendship request and then send me a message. Best, Dominic

Highlander

@Highlander

@dominics I'm going to get all John McVicar here..... You know my name and I gave you my *ucking number!! Couldn't help myself..... I've always wanted to say that..... All the best.

watsoncraig

@watsoncraig

The specialist nurses and Doctors understand but the non specialists can’t seen to get their heads around MS. The specialists know about meds so I trust them

LittleBoPeep

@LittleBoPeep

Hi, I’m a qualitative researcher in a health field. Just finishing a PhD - one of my themes was around patient treatment preferences. Different population, but some similarities! Still writing but let me know if you want to know how it went... 1). I think my consultant is more risk focused than me, he also just quotes guidelines at me which is very frustrating, it would have been useful if he talked about what he could do opposed to what he couldn't. I was grateful for my ms nurses input into the decision making process. I have to admit most of my opinion was formed by reading online info - ms trust & barts ms, here as well I suppose. 2) I think I have a good understanding of the risks that emerged as part of the trials. I feel I have little appreciation of the wider debates around immunosuppression /Long term immune senescence and cancer risks.... more real world monitoring needed I reckon. Hope this helps...

doubleo7HUD

@doubleo7HUD

1. I was fortunate to meet GPs and other professionals that do have experience with MS from the start who were all fantastic. I was offered more or less anything I wanted to start with but I chose to go with the option that was less disruptive in the short term also I could not make my own mind up and missed the boat anyway, my treatment options got reduced drastically. They did help as much as I let them at the time I’m a stubborn bugger with kids to feed etc... all the information I needed was provided tho. 2. Don’t like thinking about the risks or how knackered I’m going to be because of ms (I know I’m going to head down sh1thouse) it gets pushed to the back of my mind, I do understand it but prefer the cross that bridge when I get to it route whilst at the same time prepared for anything. my GP said I was a stoic bless him.

doubleo7HUD

@doubleo7HUD

Hope that helps if you need anything else let me know and I will answer as honest as possible and il try to put my half serious head on at lest 😂

doubleo7HUD

@doubleo7HUD

I also agree with @littlebopeep I’m not so sure it’s best in the long term to beat yourself silly for short term gains. There’s a lot of external influences that may try to force you down certain paths mostly for there own gains. It’s similar to all this election business at the moment and I’m sure many of you have spoke to someone that has tried to force there Veiw on you Be it subliminal or directly.

chezy17

@chezy17

Well here goes: For me, I'm happy with how my MS is being treated by by neurologist and MS nurses. They helped me choose, well they suggested the best course of action, honestly I don't think my MS is going along a usual path. Confuses them, my last appointment, I mentioned I'd walked over 60 odd miles in 5 days, shocked them to say the least. Perhaps it's still early days and I have a long road ahead of me? With regards to the risks, I don't want to hit it hard. I've two gorgeous munchkins to take care of by myself, a job, a degree to do and a life to lead, honestly, the risks scare me more than the actual MS to be honest and I don't want more problems added. I'm winging life really, what will be will be 😊. Cheryl

GlawsDan

@GlawsDan

1. The consultant gave me the choice of two Biogenesis products... Avonex and Tecfidera. Very surprised at the time that the patient chooses!!! Plumped for Tec and have been happy with it. 2. Not comfortable. However the efficacy rating did the talking, so the decision was made to go with Tec. Still uneasy about the fact the medical professional don’t know exactly why as well as it does. Happy to chat more, pm me if you like. All the best Dan

Vixen

@Vixen

Hello @dominics, i) Within 2 weeks of being diagnosed I attended a newly diagnosed clinic. There I was given - with a few others - some literature including a leaflet about 12 DMDs for me to choose from. I asked if I could get a personal recommendation based on my age, stage and symptoms but was told it absolutely had to be my decision. I went for Tecfidera as I felt it would be the lest disruptive to my life. At age 50, I felt I should just go for it to maximise the option of slowing things down as I got older ii) I read all the blurb available about Tecfidera and felt confident that I would be well monitored, which I have been. I am a reasonably intelligent person but not a scientist or medical type, so the real science of DMDs is right over my head. I trust the experts. I have to. I wish you lots of luck with your proposal. I’d say you deserve this 😊

DominicS

@DominicS

You guys are awesome. Thank you for taking the time to make such thoughtful and detailed replies. I can't put my finger on it but I think there is something in the power dynamic between Dr and patient which can cause different outcomes, however unintentional it may be. Feel like I am casting about a bit and not sure of the direction. I also need to speak to the authors of a big piece of work that is being written up and readied for publication, to avoid duplication.

StevenH67

@StevenH67

1) The MS nurse was instrumental in my choice of Tecfidera. She explained all my options and the time and let me choose. 2) I am pretty comfortable with the risks involved based on the information I've been given or is available on MS Trust or MS Society websites for example. I based my decision on how it could and would impact on my work and family life. Will use the same process for deciding next option.

Colin_Davies

@Colin_Davies

Not sure what you mean by regular everyday. Each person with MS is an individual with a unique history. I was "lucky" in going from a man with symptoms of premature aging to a diagnosis of RRMS on a single day. It took around 3 months to see my MS nurse and another 2 months to see the neurologist another month for an additional MRI scan to refine the severity of the activity. This determined the choice of drugs available to me. A couple of more appointments with the MS nurse to be told what was available and brief me on how to take them. MS Society and MS Trust provide good information to help with the decision. Started Tecfidera 10 months after diagnosis. Neurologist had to determine what was to be available. MS nurse aided choice and monitors treatment. I looked at information on effectiveness and risks of drugs. Happy with the people, but should it have taken 10 months?

DominicS

@DominicS

@colin-davies - fair point. I, and several others I know, are fortunate to have fallen 'inside the system' and therefore it is harder to view it from the viewpoint of an average person. Something I am well aware of doesn't exist as my particular MSc was in a form of statistics. I can only imagine being a 20-30y old female (3 times as likely as a male), no reason to have seen a doctor for anything other than ordinary niggles that we all get, who is experiencing worrying and odd physical symptoms leading to an MS diagnosis. They are then thrust into an entirely new world, required to make drastic changes and think of such unlikely things- quite possibly to accommodate theoretical but statistically likely future events - and are likely faced with choosing a powerful drug to boot. And so on. Hence me asking for ordinary everyday folks. I worked in pharma for 10y in my 20s (when I was diagnosed), lived with a Clinical Research expert for 8y, have accrued many medics as social friends, have had 13 ortho surgeries - all as a result of an active lifestyle and not the MS - and taken part in several clinical trials for MS over the years. I feel distinctly not average! Perversely, it has made my treatment path luckier and less usual. I am male, 50 and have had MS for more than half my life.

ItsMewithMS

@ItsMewithMS

@dominics not sure if you need input from the "other side of the pond" ;-) I am in the US in MN which is known to have great medical community and support. When I had my first symptoms back in 2005 that led to Dx I was referred to a Dr at the U of M in Minneapolis that was a MS expert. There were only two DMTs at the time and explained the differences between them. He felt that Copaxone had a slower "load time" until it was in full effect but had fewer side effects and since I didn't have a very active MS he advised I go with that and take part in a clinical study (Assert study) going on at the time that would give me extra monitoring and free tests at the time and as it was just adding bursts of prednisone during a cycle he didn't see it as dangerous. I did that and while the study didn't work out I felt there were personal advantages to being in it. He retired and I shifted to another neuro that was also a MS specialist. Unfortunately he was of the mindset that thought it wise to not shift around much between DMTs unless it was really active. I ended up staying on Copaxone for 11 years even through I had lesions adding up and some attacks (controlled by massive steroid treatments). Every time I called with symptoms I was promptly given MRIs and if there were active lesions (and I think every time there were) I was given steroids. I moved to another state and switched Neuros again. This one looked at me and my records and after about a year said that I shouldn't stay on Copaxone any more and gave me a few DMTs to consider with the top reccomendation being Rebif. I just felt icky on it and checked back with him and was reduced to the lower dose of it and felt ok. After several years of minor little issues adding up but no new lesions or attacks he said he felt I had transitioned to SPMS and recommended I consider 3 different DMTs that were pretty newly approved to consider with his top preference being Ocrevus, but again he encouraged me to research them and make a decision. I checked them all out and started with Ocrevus in September. 1 I think my first and current Neuro were good at knowing my options and giving me basic information on them and encouraging me to research them on my own and reach a decision. I used the MS society pages as well as this forum and other information on the internet such as that put out by Dr Boster on You Tube. I also went to one of the top medical sites in the US that is strong in MS "the Mayo Clinic in Rochester MN" for a second opinion and they basically confirmed his diagnosis. 2 It doesn't seem like knowing and understanding the overall risks of MS and the treatments is as valuable as understanding yourself and your capacity to heal and how you react to challenges. I may get some of this info from my Neuro but most from the internet. I usually bring studies and information into him and ask his opinion ;-0 I can read what happens to "some people" but it is all statistics and a lot of "it depends" so I don't get much from that as it is never definite. I am more interested in what I can do to increase my odds of staying mobile and cognizant and doing those things. I go "4 for 4" as Dr Boster says. Take your DMTs, exercise, eat right, avoid any exposure to tobacco smoke, take your Vitamin D". https://www.youtube.com/watch?v=TSr03KmGDIM

DominicS

@DominicS

@itsmewithms - thank you for your thoughtful and detailed reply. No sign of losing your marbles quite yet. Unlike @highlander who sits in the corner like Father Jack making random and slightly sweary outbursts ;)

ItsMewithMS

@ItsMewithMS

Thank you for your assessment...I am still waiting for the results of the NeuroPsych appt I had at Mayo on Nov 26th. I think the process of requesting the test results was an additional cognitive test...that is if you manage to find a way to get them to provide your results you have proven that you are not only cognitively superior to the programmer that designed the site but also have a great deal of perseverance ;-0 My last boss was not a fan and managed to nudge me over the edge of Corporate Life. Still considering if I should make a case against them or her... And I must stand up for @highlander as his vocabulary exploits and outbursts are often a fair response to the question or position posed...I'll give you this one Highlander but behave yourself ;-0

Highlander

@Highlander

@dominics Max Planck say's progress only happens one funeral at a time... Looks like I'm hanging around for a little longer so I may as well contribute. 1 MS Nurse first meeting 2 months after being DX by letter.... And having to complain for an appointment with her. Here's some books they'll explain things. See you in 3 months.... bye. 2 first meeting with Neurologist 3 months after DX...... you've got MS I'm sure you've read about it by now. Tell me about what problems you have ......ah I see insomnia I've got a pill for that. Forgetfulness.... I have a pill for that. Me.. I've read about these things called DMTs what do they do? Here's a list pick one but you can't have any of the infusions we don't do them here. If you need an infusion after a year we'll let you know. 2 years later I'm still as I was, despite finding a new neurologist I feel like I'm up excrement creek with out a paddle. So if you don't like my gallows humour you can go fornicate your self...,,. I'm having a well deserved tantrum and throwing my toys out of the pram, don't you know. Normal sarcastic services shall be returned to normal shortly, with the minimum of expletives..... Peace and good will and have a Happy Christmas......

ItsMewithMS

@ItsMewithMS

I see @highlander has returned to his preset factory settings ;-0 you crack me up @littlebopeep has valid points that made me think back to when my sister and when my step-mother were both independently working through breast cancer. Their approaches were completely opposite each other. My step-mom was a "I trust you, just tell me what to do" type of patient while my sister was very involved in her own care, researched everything, made up her mind based on her research, etc. I sense that MS patients are very similar in that some people will in either camp and may switch camps throughout the course of their disease. The Drs will follow the lead of the patients. If the patient just says "tell me what to do" they won't force their information on them while the patients that ask more questions and push more will likeluy (hopefully) have more interaction and input on their own care.

Beefree

@Beefree

Hi @dominics Hope the below might be useful, with apologies if it's too detailed. Gd luck with it! 1 – how you feel the Doctors and Nurses helped you choose your medicine? My neurologist was most influential in my treatment choice. He was an open minded neurologist who supported me to get on treatment early. He shared with my the MS decisions tool, I found the treatment comparison option incredibly useful in navigating differences between treatments and side effects. I heard anecdotally that he was the only neurologist in my hospital who was forward leaning re: getting patients onto treatment early. Had I had a different neurologist it's highly likely that I wouldn't have been on treatment as swiftly. I became conscious that something as important as early access to treatment and the approach to your care really does come down to the mindset of the individual professionals who you come into contact with. This can work for and against you depending on your own preferences as a patient. Many neurologists will take a conservative and risk averse approach to interpreting criteria and guidelines, which if you're a well informed patient with a relatively high risk appetite, can cause conflict in meeting care needs. It's right to have guidelines and a process for applying guidelines so that there can be accountability for decisions, but sometimes they inspire, or are used to justify, an overly paternalistic approach. I don't think it's realistic that all medical professionals will have the same approach, and if they did it wouldn't meet the variety of patient preferences, in which case, there should be greater flexibility for patients to identify and be treated by medical professionals who match their mindset in the approach to treatment and care. Where my neurologist and I differed was in risk appetite. We chose Tecfidera but I would have gone straight for Lemtrada. To be fair to my neurologist, I didn't strictly meet the criteria for Tecfidera; however, I felt strongly that my lifestyle - I travel a lot with work and would find the Tecfidera deliveries and strict timing schedule restrictive - warranted complex case consideration. I had also done a huge amount of reading, through which I aligned with the inverted pyramid model of running hard and early at MS. I felt confident that my view was well founded of the available evidence and representative of my mindset and general approach to problems. I knew about the additional risk and wanted to take it but that was a choice too far. I was being told that I had choice - amongst a level of treatment - but not complete choice. I accepted my neurologists preference because he was open minded, exceptional and extremely compassionate, so I had trust that he had developed his view from thoughtful and careful consideration. Nevertheless, through these discussions I felt confused about what patient choice really meant - I think there needs to be more clarity on the parameters and limitations of 'patient choice' in the decisions that are made. And far more visible communication of patient rights so that patients less used to challenging people in positions of authority than am I as a result of my work, don't experience inequality in empowerment. My MS nurse was an incredible source of emotional support. She had been an MS nurse for a long time and was unused to the degree to which I was informed, but even though it felt a bit new to her, she was always supportive. She gave me information and lots of insight from the experience of others and was happy for me to talk it out with the neurologist. I found that the GPs mostly have a dated understanding of MS but play an important role as advocate and support. I recently challenged to have my treatment changed and my GP was helpful in advising me in how to frame the discussion with my neurology team, and although it wasn't needed, they were ready to help me get a second opinion. Knowing that they were in my corner with support to challenge, if needed, was hugely valuable. 2 – how comfortable you feel about understanding the risks that MS poses to you and the MS drugs may pose to you. Me - I don't feel comfortable about understanding the risk that MS poses to me specifically. I'm familiar with all of the generic information but the message is also, who knows how all of this will affect you specifically over the long term. For me, this is where biomarkers in relation to individual data tracking could be very exciting for MS'ers. My hospital has a good app tracker into which you can input daily variations for a selection of symptoms/factors relevant to you, including diet and exercise. It's easy to use and has an option to look at data graphs, which help me spot micro trends over time. This could become very exciting with more detail and nuance in the factors tracked, and matching this data against advancements made in understanding markers for medium and long-term prognosis. For example, at some point it might be that the development of worn devices can track biological factors more closely and accurately to provide information in individual risk shifts and associated lifestyle adjustments. So, I understand the risks but it feels too basic to be useful or practical to me specifically. Separately, I do feel that who I'm dealing with has an impact on how my understanding of the risks makes me feel. My GPs are always very impressed that I look healthy and appear to be coping very well, which is nice but leaves me feeling that I'm being too optimistic about the degree to which the risks will affect me. On the other hand my MS nurse and neurologist are incredibly motivating - the picture has greatly changed and there's no reason to think that you won't be leading a very normal life for a very long time, which helps me feel that if I'm positive in acknowledging the risks but not letting them dominate my life, then I can influence how MS impacts my life. Of course, there is a risk that both types of interaction are about managing my emotional and psychological reaction to MS, while potentially holding back the less comfortable details. If this is the case, I'm not sure that it's the wrong thing to do because we might as well feel as positively as we can for as long as we can. But I suppose there is a point of interest around transparency and level of detail provided by your MS team about how your risk is developing. Drugs - I'm aware of the listed side effects for the treatments (the MS decisions tool is a really good starting point), and my MS nurse is very clear and thorough in explaining these sorts of things. I'm forward leaning in my treatment preferences, and have experience of research, which means I've chosen a treatment that I accept might carry risk that will become more apparent over time. I'm comfortable with this risk, others might not be, in which case I think the important thing is that the unknowns are communicated to patients as clearly as the knowns, and perhaps patients could be kept informed about new knowledge in relation to their treatment at the annual check-up. There are some risks that could be examined and documented more. For example, I'd be interested in understanding the impacts of treatment on fertility - not just whether a treatment can be taken while pregnant or trying to become pregnant, but on general fertility levels should you want to get pregnant at a later stage. I would say that I felt a little dismissed at first when I experienced side effects not listed - hair loss and night flushes while on Tecfidera- so I think that neurologists/ms nurses/gps could respect more the lived experience of taking these drugs.

DominicS

@DominicS

Brilliant, thank you.

DominicS

@DominicS

Thank you. I have been really touched by the help and support y'all have given to me on this. My research proposal is shaping up. Special thanks to @littlebopeep as it was a chat with them where a penny dropped. I am focusing on risk in MS. The understanding, appreciation and communication of risk across pwMS and their clinicians. I believe this is sub-optimal and can impact treatment choices and outcomes in many ways. Sometimes good, more often leading to gaps that need to be addressed.

zoeyw

@zoeyw

Had first symptoms in my teens, but never got an official diagnosis until I was in my 30's...as the consultant said he didn't want to "label"me with that!!. Symptoms have progressed, but wasn't offered any treatment options until last year...11years after diagnosis and with obvious deterioration! Took a dose of optic neuritis before I received steroids...the Tecfidera...which isn't working...having had further relapses!! On to the next.... Current neurologist is lovely....but very laid back...have to research everything myself as he doesn't talk to me about risks and side effects! Nurse too is great, but limited with what she can do...spends most of her time chasing consultants for answers!! Just keep on keeping on x

Katie_Holt

@Katie_Holt

hi I was reading through this and I do think it is more difficult to ask just these 2 questions. I have lived with what I now know to be MS since I was 12. I only got my diagnoses a few months due to an accident I had at the beginning of the year. but to have the lumber puncher to make sure it was MS I had to agree to going onto the trial. I've not see the consultant since and my GP doesn't even know what to do to help me when I have a relapse like I am now, as the consultant hasn't written conforming I have MS to the GP. its hard to get an appoint with the consultant and even harder to get the bloods done for the trial. so to answer your questions 1 – how you feel the Doctors and Nurses helped you choose your medicine. if I wanted to find out right away after years of living with the problems then, by having the lumber puncher then I needed to go on the trial drugs. so if that's a helpful choice then yes. 2 – how comfortable you feel about understanding the risks that MS poses to you and the MS drugs may pose to you. I don't understand it at all and the more I read the more I become confused and understand less as there is so much information about it it doesn't help when know one points you into the right direction.

Highlander

@Highlander

@katie_holt Hi and welcome to the club. Having read your post... I'm going to ask more learned members of the site what they would suggest as a way forward for you. As far as I can see Mitoxantrone hasn't been mentioned on here for around four years and it's not on any trials that I can find..... there is a more effective Med being used for SPMS called Ocrevus. @dominics @stumbler any other words of wisdom??

Highlander

@Highlander

@katie_holt More effective Med for PPMS even called Ocrevus

DominicS

@DominicS

@katie_holt Have you read this? https://www.mstrust.org.uk/a-z/mitoxantrone-novantrone I read this that broadly speaking it has been superseded by other meds. Given the relative risk profile of the drug then if the Doctor has - with your input - explained a very cogent reason why he/she thinks that this is the best option amongst several then fine. I'd go with them if they have experience with it, closely monitor you and record the reasons why in your notes. It may be illuminating to ask the Doc why they suggest that over and above any of the other available therapies.

DominicS

@DominicS

@katie-holt and anyone that wants a well written book in an easy non-sciencey manner I would suggest reading the Norm Chronicles by David Spiegelhalter. I bought my copy used for 35p plus 2.80 delivery! https://www.amazon.co.uk/dp/B00CQLC30Q/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

DominicS

@DominicS

@zoeyw - sadly, a v typical story.

Katie_Holt

@Katie_Holt

@dominics first of I should have said good luck with the paper you are doing. im under the royal London and Harlow hospital and I was given the Mitoxantrone in tablet form only a few months ago as they are running the trill there. I was never explained what the different stages of MS are and how they can affect you, along with any real information about it I picked up information in the waiting room and that was it. I was invited to go on the trill but again never got told much about it what I learnt was what I read in the leaflets that came with the pills and then what I looked up online. I do think there needs to be more information given when giving diagnoses, and taking the time to book another appointment for a few weeks later to talk about it all as being told it and taking in information is something that is overloading all in one hit. I was told there is 3 stages 1-1.2-or 2 and im between 1.2 and 2 that was it, but from things I have read there is different types of MS or relapses, I wasn't told and still don't no what im meant to do when having a relapse like I am now and even my GP doesn't know what to do so im no better off with the diagnoses and on the trial to what I was before hand.

Stumbler

@Stumbler

@katie_holt , trials are closely monitored, so I would be surprised if you didn't have follow-up clinic appointments booked. Contact your MS Nurse and see what they know about this. Trials should be registered and have an allocated NCTxxxxx reference. Unfortunately, it's a fact of life that our NHS is over-stretched, which doesn't allow the Doctors to spend as much time with their patients as they would like. We have to do our own research to fill in most of the blanks. Check out the MS Trust for a variety of brochures/booklets regarding MS and specific aspects of MS. They can be read online or ordered free in hard copy :- https://support.mstrust.org.uk/shop

ItsMewithMS

@ItsMewithMS

@katie_holt it looks like you are under good care but may want more MS information and education. There are many sites and sources of that of varying worth. I have been watching a lot of Dr Boster an MS Neurologist in Ohio/US. Search him on You Tube and you will find a lot of videos. He has good ones on diagnosis and DMT options that you may find interesting. As he states he has created these videos to help his patients between their appointments and to be prepared for their appointments. I keep a question post-it on my PC that I constantly add to and bring that and my "MS diary" of symptoms to my Neurologist appointments- ;-) it really helps

Katie_Holt

@Katie_Holt

@itsmewithms thank you

DominicS

@DominicS

@katie_holt Trials - an entirely different matter because, as @stumbler said, the monitoring is superb. and the fact you are on means that it was a very thoughtful decision. It is terribly hard to tell from written remarks whether you had fallen under the care of a 'maverick' (much less likely these days) or there was a back story (there is). I have searched for mitoxantrone trials running at the moment and can't find any. The database Stumbler mentioned that should have everything and the EU Clinical Trials Register which is showing an old message saying, https://www.clinicaltrialsregister.eu/ "News update 20-11-2019 We are currently experiencing technical issues with the EU CTR website. Trials which should be in the public domain are currently not being shown. Our technical teams are working on it. We apologise for any inconvenience." If you are on a trial these days you have to sign and initial so many consent forms and a very direct conversation about potential risks and benefits as well as it is made very clear that you can terminate at any time for any reason and ity will not prejudice your ongoing care. Does that ring any bells? The Trial number should be on all paperwork and there should be a special; number to call only for trial patients. Ring a bell? Best, Dom