I appreciate your approach. When I was diagnosed with highly active rapidly evolving ms, i was given the a very basic NHS info pamphlet, a meeting with a nurse who could only reiterate the info in the booklet, and i got to figure it out for myself. I picked Tysabri but still question my decision (the nurse said there was no difference besides side effects, as they were both high efficacy treatments.) She continues to have no understanding of SAW or see any benefit in considering a switch to an IRT like Lemtrada.)
I wish my (very well informed but unreachable) consultant would have been accessible the way you described being for your patients, but he seems to be under the misconception that the MS Nurses know the differences between IRT & maintenance therapies… they don’t. I am basically on my own until next year when I see him again because the nursing team can’t/won’t assist me or provide me with more information than the information that I can read in the DMT booklet. I despair, I really do. Thank you for helping your patients so dedicatedly, and thank you for helping us through these newsletters - it is very very much appreciated.
I have always said to friends relatives to ask when given medical choices, if this was you or your wife or your daughter what would you choose if you were in this situation. It usually works. Just now for me though it is not which DMT, it is whether to have them and I am completely out the loop! I have probably had MS since my mid twenties, Lhermitte's - ( neurology Professor said in clinic letter then "the patient herself feels she is too well to have MS". How would I know?. It was after leading question. I was a trainee Dr at the time. I didn't know how to self diagnose MS). Various mild events - optic neuritis, 2 X facial palsy, vertigo etc over the years with initially the only lasting symptom overactive bladder. Everyone seemed to encourage a wait and see plan. I have survived until 62 years with no visible disability until after a further another facial palsy I had my first MRI which showed inflammation and many lesions. Finally a diagnosis of MS all my pins and needles, tinnitus, periods of unsteadiness and extreme fatigue make sense. During the last episode I had significant cognitive symptoms which took 18 months to begin to improve. Very difficult neurologist to communicate with. I have only seen him once since diagnosis. He said you are not for treatment just now. Despite me being a now retired Doctor he would not expand on this. Is it risk benefit?- surely my choice as I suspect he values physical symptoms over cognitive. Am I too old? Does he feel I am in the progressive stage just now?... he did say things will get worse. He seems to have me on a wait and see yearly review. After my most recent MRI I got a one line letter letting me know my brain I was radiologically stable. I want more answers, but one thing this consultant did let me know was that that he very much overwhelmed with a large caseload of people very much more ill than me. I felt all these people were sitting in the consulting room with me and this inhibited me from taking his time. This neurologist may well be right and I may agree in the end with his management but I am frustrated to the extent that I am considering a private consultation so that I feel more informed. I am very grateful that my symptoms have been mild and I do have the means to pay for the luxury of shared decision making bit realise not everyone is in my position. I want to protect what's left of my brain if that is an option.
May 22, 2023·edited May 22, 2023Liked by Gavin Giovannoni
There are many Neurologists out there who don't take the approach you describe. An approach I happen to agree with.
The amount of times they seem to have abrogated any responsibility and attempt to veil this dereliction with the 'patient choice' cloak is extraordinary.
Sure, I want to choose, to advocate, to push if necessary but I also want to know that my neurologist has my best interests at heart and they will use their expertise and ultimately their power (in the clinical context) to ensure I don't do anything stupid that will hurt me.
What must be problematic within the patient/doctor relationship is the idea that the doctor ought to use an innate 6th 'doctor sense' to just discern certain things about the patient. There are occasions such as the mother on Lemtrada where the 6th sense was spot on. It must be very tricky to score a bullseye every time.
And that is why so many neurologists (MS Teams) like to invoke the mantra of patient choice to dump the decision making on a non-expert. It saves them any need to become emotionally involved and whether or not it is what they would have chosen for the patient it is all ok as, after all, the patient chose it. Whether that 'choice' was rigged by the options offered, the without context decision aids that patients are often referred to, a split MDT, the power of that doctor to advocate within their institution etc is no longer consequential to the doctor. Most patients have no idea how their so-called choices are rigged before they open a leaflet or fire up Google.
What's more, as MS is for life but the clinical relationship between a patient and the same doctor rarely lasts as long then the said doctor is rarely confronted by the long term effects of a medication choice.
I have always been guided as to the most appropriate treatments by the 3 neurologists I have had over the course of 25 years. However, I have had "secondary progressive ms" for 9 years [and believe I have had smouldering MS for longer] and have deteriorated rapidly over the last year so that it is difficult to stand, dress etc but it seems as though there is no appropriate medication - let alone a choice of drug therapies. I am 52, still working part time but now desperately wondering is this it? Is there no appropriate drug therapy?
I have never been put in the position of deciding what DMT to take because I was diagnosed nearly 30 years ago and my MS moves very slowly. The view for an outsider looking at the options now available are very complicated.
How can I as a patient make the correct decision after a diagnosis of MS that is a traumatic event? What I can do is tell the consultant about my life style and what I would like to achieve. Hopefully the consultant can then make a definitive selection or present me with two or possibly three options and discuss the pros and cons of each
I guess this is "guided decision making". It can't be easy for the consultant and it certainly can't be easy for the patient but by trusting each other there is a good chance the correct decision will be found.
May 22, 2023·edited May 22, 2023Liked by Gavin Giovannoni
As someone who was refused highly effective DMTs for too long (even when my MS progressed), I have to say it made me lose trust to my neurologist and her decision-making skills. I think the element of trust is HUGE in the above topic.
In my opinion, the best way for a doctor to earn trust is to provide convincing, evidence-based, and specific to my case reasons and explanations for their suggestions. Then yes I will gladly follow their guidance and I will prefer that they take the wheel. But if their explanations are ‘that’s what the treatment algorithm says’ I actually will seriously doubt their intellect and will prefer to take control of my treatment plan, and be at risk of being overwhelmed with all the information, and possibly even make the wrong decision : ( It sucks, but this is how I view this. I wish I had access to more doctors where I live but how the system works here is that you are stuck with one neurologist for ever and cannot really switch
My appointment with my neurologist after confirming diagnosis was basically him writing on a piece of paper (after he told me to do a bit of research for our appointment on DMTs)
Low efficacy
Mid efficacy
High efficacy
He wrote down literally every single dmt and classed them as is.
Basically said, look I won’t be your neuro if you choose a low efficacy dmt. (I don’t think he was serious but he made that point) and only wanted a high efficacy dmt
He wanted me on Lemtrada but due to first big Covid wave and the fact that I needed to work/be in an office and I was JC negative Tysabri would be a great option to start. Full vaccine response and less infection risk which made a lot of sense
If no Covid I would’ve probably taken his suggestion or Mavenclad.
I’m very fortunate I can switch and choose to what I prefer in australia. Bar aHSCT which isn’t as easy to get here
I have not been offered any DMT options for this reason. My Neurologist is due to retire in September and has declared that I should be categorised as having benign MS. Although my MS Nurse did not readily agree. How would you define this? I have never had a relapse. I think I have possibly had RRMS since I was in my early 30s. A lot of my MS friends think I should be on a treatment.
When I was diagnosed in November 2017 I was offered beta interferon, Copaxone, Tecfidera or Lemtrada, and my neuro said "of those I highly recommend you choose Tecfidera". He had explained them all, what the method of delivery would be, the level of risk, the monitoring required. I was relieved when he recommended Tecfidera because I was already thinking that would be my preferred option after he explained them. I suppose that was "guided decision making". If he had strongly recommended Lemtrada would I have opted for it? I have a slight amount of regret about not choosing it, but I think at that stage in my journey it would have freaked me out if he had urged me to choose Lemtrada. I would have found the infusions and the monthly blood tests too intrusive. And I've been stable on Tecfidera.
This makes sense to me - it always seems a bit odd for an expert physician to ask me to choose. And yet, there are occasions when as a patient you are rightly confident that the direction you receive is wrong.
Would it make sense to say clearly, as a neurologist this treatment is my advice, but this is a list of the alternative treatments you are entitled to if you choose to ignore my expert advice?
This is where I feel handcuffed, so to speak, having been diagnosed with PPMS. My neurologist at the Barlo Center (Canada’s best known MS clinic) has suggested it's slow moving and is reluctant to recommend ocrevus, which is the only DMT prescribed for PPMS here. If I could make the decision I'd actually try Cladribine. If Cladribine is an immune system reset of sorts, why not? aHSCT is available, at a high cost, for PPMS and also resets the immune system so I struggle with why Cladribine or Lemtrada would not be tried.
After 10 months from my initial optic neuritis and numerous MRI'S with atypical enhancement and a LP which showed Viral encephalitis . I was diagnosed with MS. When I had the temerity to ask why they thought it was MS now, after months of being told the scans didn't look like it. I was told I needed to see a Psychologist to come to terms with my diagnosis. I was then asked to pick my own treatment. I found this astonishing. As an accountant I wouldn't ask my clients how much tax they wanted to pay! I had Tysabri for under 2 years but had UTI's every month and asked to be transferred to a different treatment centre. I seen a new neurologist who initially said I should be on a DMT as an insurance policy. Then after reviewing my scans he has decided I don't need to be on treatment. I only need to take Aspirin for Hugh's syndrome. I am still very forgetful from the Viral encephalitis and still have seizures but I am physically well. Still no rebound after 20 weeks off Tysabri. Thank you so much for the info that you provide it has been amazing. I will still carrying on subscribing so that I can help in wee way with your continued efforts to provide information to help people impacted by MS.
I am incredibly grateful that my MS neurologist (US, MS Center based in an academic medical center) navigated the complexity of the MS DMT landscape for me. That right person at the right time has been KEY for me. I am incredibly lucky to have landed with my current neuro & it took a team of advocates to quickly get me in. I had an inpatient neurologist at diagnosis (Inpatient Emergency Room scenario) who was amazing and ordered steroids appropriately and consulted with me/my family during my hospital stay & then another outpatient neurologist follow up one week after hospital discharge who laid out the options for all DMT and treatments *and* told me that I needed to get into a MS specialist as they were both general neurologists. I was overwhelmed, but then able to get into their top recommended MS neuro- I am lucky.
In 2018 just 6 weeks after diagnosis, my now MS neurologist recommended Tysabri (pending JC testing) and Ocrevus. He was very succinct and straightforward that my JC level was way too high to be a DMT for me & that Ocrevus would be the correct route. I absolutely relied on him to wade through all the noise and utilize his years of clinical experience and tremendous knowledge gained as a researcher - to make the decision for me. He did constantly ask me if I had any questions - which I did & we discussed numerous options. He was firm about the DMT route (Ocrevus) to take.
He has also guided me to an integrative medicine approach - appropriate medication, nutrition, exercise, supplements - including Vit D, meditation/mindfulness, the criticality of not smoking (I have never been a smoker - but I appreciated knowing that I was already doing that one thing right!)
This very proactive approach has also been CRITICAL during Covid.
It is such a relief to know that I have a MS Neurologist who is on top of the MS landscape as a research discipline. I am very lucky that, at diagnosis and especially the first 3 years, I didn't feel like I had to figure it all out on my own!
I agree with the comparison with the specialty of oncology, although in the ancient days, they had no idea what the permanent side effects of high chemo doses would be as they do now. For those of us that’s are old with MS, the choices were very limited. Betaseron lottery! There were the ABCs until, iirc, Tysabri. I am in the states, and the JC question was frightening, at least to me at my age then because my neurologist didn’t seem to understand much about it. I tried Aubagio at one point, but reverted back to Avonex. But there was no discussion, for example, whatsoever of loss of brain volume, which now at my advanced age I am so much more concerned about. If I were younger, I would definitely default to my neurologist’s advice and discuss options. If I knew then what I know now, I may have given Tysabri a go. With the sheer multitude of DMTs today, however, I would likely work with my neurologist’s advice, since the choices seem overwhelming. Having reached NEID/SAW and am considered “cured”, yet getting worse, I await a comprehensive approach to MS. Thank you, Prof G for pushing the boundaries. (I still marvel at your X-ray.)
I’m guessing a neurologist trains for c.7 years (medical school / hospital experience), then builds up experience as their career goes forward. I would expect all neuros to have a good understanding of MS ie what damaging is occurring and a decent knowledge of the therapies available (various continuing professional training courses, ECTRIMS…). A new patient with a brain disease (MS) wants one thing - to stop further damage / further disability worsening / brain atrophy. So the neuro should be recommending the therapy / therapies which best deliver this outcome. The low efficacy therapies are an embarrassment - the equivalent of putting out a house fire with a bucket full of water. We need to flip the approach. Neuros shouldn’t fall into the “wait and see”, “start with the least effective therapy and escalate when required” or “hit hard and early” approach. The approach should be standardised “recommend the therapy which gives the best chance of reducing further disability worsening / brain atrophy”. I think the situation is complicated by patients not realising how serious MS (particularly after 15, 20 years) and thinking that they may be lucky and have a mild course. Patients need to be told how bad MS gets (it’s a progressive neuro-degenerative disease and way more is going than relapses) and not presented with 20+ options, but 3-4 (HSCT, Alemtuzumab, Cladribine, anti-CD20). Neurology is such an outlier compared to other specialties. My uncle was diagnosed with prostate cancer a few years ago. The specialist said to him “you have prostate cancer, I want you start x treatment asap and we’ll keep a close watch on you”. My uncle never read an article about his disease - he trusted the specialist and got treated effectively. Neurology is a lottery - your outcome is decided by the neuro you’re sent to and the “approach” they “like” to follow.
I appreciate your approach. When I was diagnosed with highly active rapidly evolving ms, i was given the a very basic NHS info pamphlet, a meeting with a nurse who could only reiterate the info in the booklet, and i got to figure it out for myself. I picked Tysabri but still question my decision (the nurse said there was no difference besides side effects, as they were both high efficacy treatments.) She continues to have no understanding of SAW or see any benefit in considering a switch to an IRT like Lemtrada.)
I wish my (very well informed but unreachable) consultant would have been accessible the way you described being for your patients, but he seems to be under the misconception that the MS Nurses know the differences between IRT & maintenance therapies… they don’t. I am basically on my own until next year when I see him again because the nursing team can’t/won’t assist me or provide me with more information than the information that I can read in the DMT booklet. I despair, I really do. Thank you for helping your patients so dedicatedly, and thank you for helping us through these newsletters - it is very very much appreciated.
I have always said to friends relatives to ask when given medical choices, if this was you or your wife or your daughter what would you choose if you were in this situation. It usually works. Just now for me though it is not which DMT, it is whether to have them and I am completely out the loop! I have probably had MS since my mid twenties, Lhermitte's - ( neurology Professor said in clinic letter then "the patient herself feels she is too well to have MS". How would I know?. It was after leading question. I was a trainee Dr at the time. I didn't know how to self diagnose MS). Various mild events - optic neuritis, 2 X facial palsy, vertigo etc over the years with initially the only lasting symptom overactive bladder. Everyone seemed to encourage a wait and see plan. I have survived until 62 years with no visible disability until after a further another facial palsy I had my first MRI which showed inflammation and many lesions. Finally a diagnosis of MS all my pins and needles, tinnitus, periods of unsteadiness and extreme fatigue make sense. During the last episode I had significant cognitive symptoms which took 18 months to begin to improve. Very difficult neurologist to communicate with. I have only seen him once since diagnosis. He said you are not for treatment just now. Despite me being a now retired Doctor he would not expand on this. Is it risk benefit?- surely my choice as I suspect he values physical symptoms over cognitive. Am I too old? Does he feel I am in the progressive stage just now?... he did say things will get worse. He seems to have me on a wait and see yearly review. After my most recent MRI I got a one line letter letting me know my brain I was radiologically stable. I want more answers, but one thing this consultant did let me know was that that he very much overwhelmed with a large caseload of people very much more ill than me. I felt all these people were sitting in the consulting room with me and this inhibited me from taking his time. This neurologist may well be right and I may agree in the end with his management but I am frustrated to the extent that I am considering a private consultation so that I feel more informed. I am very grateful that my symptoms have been mild and I do have the means to pay for the luxury of shared decision making bit realise not everyone is in my position. I want to protect what's left of my brain if that is an option.
There are many Neurologists out there who don't take the approach you describe. An approach I happen to agree with.
The amount of times they seem to have abrogated any responsibility and attempt to veil this dereliction with the 'patient choice' cloak is extraordinary.
Sure, I want to choose, to advocate, to push if necessary but I also want to know that my neurologist has my best interests at heart and they will use their expertise and ultimately their power (in the clinical context) to ensure I don't do anything stupid that will hurt me.
What must be problematic within the patient/doctor relationship is the idea that the doctor ought to use an innate 6th 'doctor sense' to just discern certain things about the patient. There are occasions such as the mother on Lemtrada where the 6th sense was spot on. It must be very tricky to score a bullseye every time.
And that is why so many neurologists (MS Teams) like to invoke the mantra of patient choice to dump the decision making on a non-expert. It saves them any need to become emotionally involved and whether or not it is what they would have chosen for the patient it is all ok as, after all, the patient chose it. Whether that 'choice' was rigged by the options offered, the without context decision aids that patients are often referred to, a split MDT, the power of that doctor to advocate within their institution etc is no longer consequential to the doctor. Most patients have no idea how their so-called choices are rigged before they open a leaflet or fire up Google.
What's more, as MS is for life but the clinical relationship between a patient and the same doctor rarely lasts as long then the said doctor is rarely confronted by the long term effects of a medication choice.
The reasons to move to Oz are greater still...
I have always been guided as to the most appropriate treatments by the 3 neurologists I have had over the course of 25 years. However, I have had "secondary progressive ms" for 9 years [and believe I have had smouldering MS for longer] and have deteriorated rapidly over the last year so that it is difficult to stand, dress etc but it seems as though there is no appropriate medication - let alone a choice of drug therapies. I am 52, still working part time but now desperately wondering is this it? Is there no appropriate drug therapy?
I have never been put in the position of deciding what DMT to take because I was diagnosed nearly 30 years ago and my MS moves very slowly. The view for an outsider looking at the options now available are very complicated.
How can I as a patient make the correct decision after a diagnosis of MS that is a traumatic event? What I can do is tell the consultant about my life style and what I would like to achieve. Hopefully the consultant can then make a definitive selection or present me with two or possibly three options and discuss the pros and cons of each
I guess this is "guided decision making". It can't be easy for the consultant and it certainly can't be easy for the patient but by trusting each other there is a good chance the correct decision will be found.
As someone who was refused highly effective DMTs for too long (even when my MS progressed), I have to say it made me lose trust to my neurologist and her decision-making skills. I think the element of trust is HUGE in the above topic.
In my opinion, the best way for a doctor to earn trust is to provide convincing, evidence-based, and specific to my case reasons and explanations for their suggestions. Then yes I will gladly follow their guidance and I will prefer that they take the wheel. But if their explanations are ‘that’s what the treatment algorithm says’ I actually will seriously doubt their intellect and will prefer to take control of my treatment plan, and be at risk of being overwhelmed with all the information, and possibly even make the wrong decision : ( It sucks, but this is how I view this. I wish I had access to more doctors where I live but how the system works here is that you are stuck with one neurologist for ever and cannot really switch
I’m from Australia
My appointment with my neurologist after confirming diagnosis was basically him writing on a piece of paper (after he told me to do a bit of research for our appointment on DMTs)
Low efficacy
Mid efficacy
High efficacy
He wrote down literally every single dmt and classed them as is.
Basically said, look I won’t be your neuro if you choose a low efficacy dmt. (I don’t think he was serious but he made that point) and only wanted a high efficacy dmt
He wanted me on Lemtrada but due to first big Covid wave and the fact that I needed to work/be in an office and I was JC negative Tysabri would be a great option to start. Full vaccine response and less infection risk which made a lot of sense
If no Covid I would’ve probably taken his suggestion or Mavenclad.
I’m very fortunate I can switch and choose to what I prefer in australia. Bar aHSCT which isn’t as easy to get here
I have not been offered any DMT options for this reason. My Neurologist is due to retire in September and has declared that I should be categorised as having benign MS. Although my MS Nurse did not readily agree. How would you define this? I have never had a relapse. I think I have possibly had RRMS since I was in my early 30s. A lot of my MS friends think I should be on a treatment.
When I was diagnosed in November 2017 I was offered beta interferon, Copaxone, Tecfidera or Lemtrada, and my neuro said "of those I highly recommend you choose Tecfidera". He had explained them all, what the method of delivery would be, the level of risk, the monitoring required. I was relieved when he recommended Tecfidera because I was already thinking that would be my preferred option after he explained them. I suppose that was "guided decision making". If he had strongly recommended Lemtrada would I have opted for it? I have a slight amount of regret about not choosing it, but I think at that stage in my journey it would have freaked me out if he had urged me to choose Lemtrada. I would have found the infusions and the monthly blood tests too intrusive. And I've been stable on Tecfidera.
This makes sense to me - it always seems a bit odd for an expert physician to ask me to choose. And yet, there are occasions when as a patient you are rightly confident that the direction you receive is wrong.
Would it make sense to say clearly, as a neurologist this treatment is my advice, but this is a list of the alternative treatments you are entitled to if you choose to ignore my expert advice?
This is where I feel handcuffed, so to speak, having been diagnosed with PPMS. My neurologist at the Barlo Center (Canada’s best known MS clinic) has suggested it's slow moving and is reluctant to recommend ocrevus, which is the only DMT prescribed for PPMS here. If I could make the decision I'd actually try Cladribine. If Cladribine is an immune system reset of sorts, why not? aHSCT is available, at a high cost, for PPMS and also resets the immune system so I struggle with why Cladribine or Lemtrada would not be tried.
After 10 months from my initial optic neuritis and numerous MRI'S with atypical enhancement and a LP which showed Viral encephalitis . I was diagnosed with MS. When I had the temerity to ask why they thought it was MS now, after months of being told the scans didn't look like it. I was told I needed to see a Psychologist to come to terms with my diagnosis. I was then asked to pick my own treatment. I found this astonishing. As an accountant I wouldn't ask my clients how much tax they wanted to pay! I had Tysabri for under 2 years but had UTI's every month and asked to be transferred to a different treatment centre. I seen a new neurologist who initially said I should be on a DMT as an insurance policy. Then after reviewing my scans he has decided I don't need to be on treatment. I only need to take Aspirin for Hugh's syndrome. I am still very forgetful from the Viral encephalitis and still have seizures but I am physically well. Still no rebound after 20 weeks off Tysabri. Thank you so much for the info that you provide it has been amazing. I will still carrying on subscribing so that I can help in wee way with your continued efforts to provide information to help people impacted by MS.
I am incredibly grateful that my MS neurologist (US, MS Center based in an academic medical center) navigated the complexity of the MS DMT landscape for me. That right person at the right time has been KEY for me. I am incredibly lucky to have landed with my current neuro & it took a team of advocates to quickly get me in. I had an inpatient neurologist at diagnosis (Inpatient Emergency Room scenario) who was amazing and ordered steroids appropriately and consulted with me/my family during my hospital stay & then another outpatient neurologist follow up one week after hospital discharge who laid out the options for all DMT and treatments *and* told me that I needed to get into a MS specialist as they were both general neurologists. I was overwhelmed, but then able to get into their top recommended MS neuro- I am lucky.
In 2018 just 6 weeks after diagnosis, my now MS neurologist recommended Tysabri (pending JC testing) and Ocrevus. He was very succinct and straightforward that my JC level was way too high to be a DMT for me & that Ocrevus would be the correct route. I absolutely relied on him to wade through all the noise and utilize his years of clinical experience and tremendous knowledge gained as a researcher - to make the decision for me. He did constantly ask me if I had any questions - which I did & we discussed numerous options. He was firm about the DMT route (Ocrevus) to take.
He has also guided me to an integrative medicine approach - appropriate medication, nutrition, exercise, supplements - including Vit D, meditation/mindfulness, the criticality of not smoking (I have never been a smoker - but I appreciated knowing that I was already doing that one thing right!)
This very proactive approach has also been CRITICAL during Covid.
It is such a relief to know that I have a MS Neurologist who is on top of the MS landscape as a research discipline. I am very lucky that, at diagnosis and especially the first 3 years, I didn't feel like I had to figure it all out on my own!
I like what you've described!
I agree with the comparison with the specialty of oncology, although in the ancient days, they had no idea what the permanent side effects of high chemo doses would be as they do now. For those of us that’s are old with MS, the choices were very limited. Betaseron lottery! There were the ABCs until, iirc, Tysabri. I am in the states, and the JC question was frightening, at least to me at my age then because my neurologist didn’t seem to understand much about it. I tried Aubagio at one point, but reverted back to Avonex. But there was no discussion, for example, whatsoever of loss of brain volume, which now at my advanced age I am so much more concerned about. If I were younger, I would definitely default to my neurologist’s advice and discuss options. If I knew then what I know now, I may have given Tysabri a go. With the sheer multitude of DMTs today, however, I would likely work with my neurologist’s advice, since the choices seem overwhelming. Having reached NEID/SAW and am considered “cured”, yet getting worse, I await a comprehensive approach to MS. Thank you, Prof G for pushing the boundaries. (I still marvel at your X-ray.)
I can't see any reason to recommend Interferon B or Copaxone over other therapies. Aren't the "ABC" DMTs the weakest?
I’m guessing a neurologist trains for c.7 years (medical school / hospital experience), then builds up experience as their career goes forward. I would expect all neuros to have a good understanding of MS ie what damaging is occurring and a decent knowledge of the therapies available (various continuing professional training courses, ECTRIMS…). A new patient with a brain disease (MS) wants one thing - to stop further damage / further disability worsening / brain atrophy. So the neuro should be recommending the therapy / therapies which best deliver this outcome. The low efficacy therapies are an embarrassment - the equivalent of putting out a house fire with a bucket full of water. We need to flip the approach. Neuros shouldn’t fall into the “wait and see”, “start with the least effective therapy and escalate when required” or “hit hard and early” approach. The approach should be standardised “recommend the therapy which gives the best chance of reducing further disability worsening / brain atrophy”. I think the situation is complicated by patients not realising how serious MS (particularly after 15, 20 years) and thinking that they may be lucky and have a mild course. Patients need to be told how bad MS gets (it’s a progressive neuro-degenerative disease and way more is going than relapses) and not presented with 20+ options, but 3-4 (HSCT, Alemtuzumab, Cladribine, anti-CD20). Neurology is such an outlier compared to other specialties. My uncle was diagnosed with prostate cancer a few years ago. The specialist said to him “you have prostate cancer, I want you start x treatment asap and we’ll keep a close watch on you”. My uncle never read an article about his disease - he trusted the specialist and got treated effectively. Neurology is a lottery - your outcome is decided by the neuro you’re sent to and the “approach” they “like” to follow.