I definitely agree that more than 15 mins is needed but it would be nice to have an annual review at all! I haven’t had a consultant review since April 2021.
I've never done a timed 25m walk or the nine hole peg test in the 30 years I've had MS. Clearly some MS neurologists are better/ more thorough than others.
J, you and I are on the same timeline. I think I’ve done a timed walk approximately 3 times. I’ve also been retired for some time. I believe they did the pegboard for the disability retirement. 🌷
I have never been asked to do a timed walk or peg test. I haven't had any annual reviews since I had HSCT in 2014 against the neurologist's advice. Other specialist doctors ask me who my neurologist is. I reply that I don't think I have one.
Thank you for writing this, I’ve learnt more from you than I have from any neurologist, I’ve recently moved and never see the same neurologist in the last 6 years, sadly I don’t have an MS nurse as I’m not in any of the catchment areas , not sure if mine is advanced but my husband is my full time carer I have written to my Gp to request a DNR , the neurogist I saw has passed me over for my next visit to a neurological nurse, I have lots of friends with MS who I’ve also learnt a lot from, I have no motor function in my left Leg or foot,my bladder is unpredictable and my fatigue is off the scale, because I also have a swallowing problem I can’t have any meds to help my fatigue, but as I can’t walk I’m not eligible for any new treatments as they can’t see if I’ve made any improvements, sadly I’ve just been left to get to get on with things the best way I can as I know most of friends have as well, I do enjoy reading all your posts
Dear Beverly, I am too old for any treatments and it’s hard to find care. Outer areas here in the states are having the same issues. Glad you are here.🌷
I think it would be a great idea to make time in the annual review by completing some questions/assessments remotely before the 3D encounter. Tangentially, in regard to the gloomy last stops on your schema of the MS journey, I wonder if you expect the advent of highly effective DMTs will affect that journey? I don't suppose there can be that much data yet. But do you think it is now it more likely that pwMS will get a chance to reach the end of life without becoming severely disabled?
Thanks! will aim to listen to the podcast as well as read the article in future. The 'southbound' line under construction does not show on my computer, even when you click to see the full thing because the type is too small to read and trying to enlarge it doesn't seem to work. So thanks again for clarifying
Thanks - unfortunately the line under construction doesn't show fully on my computer, even when I click to enlarge the map. So thanks for clarification - in future will try to remember to listen to the podcast as well as read the written article.
15 minutes is fine for a patient like myself who has been in long term remission since HSCT and is medically trained so that I can report back on my muscle strength on the Oxford scale and tell the consultant that there is no need to check my hand eye Co-ordination because I’ve got a respectable golf handicap and my balance is good because I can do a quads stretch standing on one leg. Prior to HSCT my appointment always over ran 15 minutes because like wise I had a long list of all the things that weren’t right! When I was having a lot of problems half of the issues that you mentioned weren’t addressed and because of cognitive problems patients don’t even think to mention them at an appointment.
Really useful as ever. I would love to complete a questionnaire beforehand to focus the review in the right areas - if only that was available. I have to admit that I am hugely disappointed if I don’t see my actual neurologist as usually the member of the team is usually too junior and can’t answer my questions and the whole review feels wasted - so frustrating to have to wait another year.
I am going to use your heading for notes for my next review.
I find your tube map depressing. A crystal ball showing your (grim) future. It’s very clever, but shows how MS ultimately negatively impacts pretty much every function of a person. Truly vile disease.
I’ve been on two trials (one with c.13 years of follow up and the other a much shorter trial). The follow up and care have both been excellent. Frequent bloods, EDSS tests and plenty of time to talk with the neuro / investigator / other members of the trial team. Such a contrast to the annual 15 min neuro appointment.
I have also wanted the tube map to be a fold-up map so that you don't see it all at once. In other words you can get to the later sections when you want to. I think I can make it work digitally.
Not sure if you realise the MS tube map could be repurposed as a map of human life. At some point we all have to face our own decline and inevitable demise.
Call me old fashioned, but the sort of demise I would have liked is a fatal heart attack at 80 while playing a round of golf (which happened to my uncle). You’ve said something like “hope I’m still running at 80”. I sit in neuro waiting rooms watching MS patients in their 40s in wheelchairs with their feet strapped in because of leg spasms and their carers asking if they need to go to toilet. I’m guessing at medical school the students opting for neurology take a special pill to harden their heart. No young person should be facing the sort of long grim demise which MS serves up.
Emma, I did mean my comment to be mean. My aunt died of MS in her 50s and I’ve had MS for some 20 years. As Brits we are too polite. There’s a paucity of ambition in MS research / treatment. Prof G says it’s unrealistic to expect treatments to reverse damage done (but the MS societies never say that when fundraising) - the best we might expect is “slowing down” the neuro-degeneration / accruing disability. As a patient, should I be grateful for this? Neuros are paid by our taxes, but patients are offered a 15 min annual appointment and told to “self-manage”. If you have progressive MS you are sent on your way and told counselling might help, or referred to a continence adviser. You’re right about assisted dying. When I can’t brush my own teeth or cut my own toe nails I’ll be ready to meet my maker. Re-read the tube map again to really appreciate the horrors ahead. It’s a clever graphic, but surely what we (relatively young people) need are real solutions. My friend with cancer has had such a different experience - effective treatments, good follow-up and now living their life as before. Am I jealous - you bet I am.
Ian you know I am one of the most vocal proponents of treating early and effectively with immune reconstitution therapies. I may be ready to open the dotted grey line that leads to long-term remission or cure. I really do think a minority or pwMS treated with alemtuzumab, AHSCT and possibly cladribine may be cured. This line is cul-de-sac that bypasses the rest of the MS journey. I am on record as saying if I had MS I would want to be treated with alemtuzumab or AHSCT, which explains my position on this issue.
My issue isn’t with you, it’s the inconsistency in MSology. Different neuros are taking completely different approaches to treatment - escalation or induction. Many patients don’t read up on the disease (eg academic papers) so put their trust in the specialist (neuro). Many patients certainly won’t challenge the specialist. Many patients see a chemo type drug (Alemtuzumab) as too risky (they don’t see what MS does 20 years down the line), especially when their MS hasn’t really impacted on them, or they see pictures of young MSers playing tennis on MS Society websites. I got Alemtuzumab from my own research and writing (begging) the research team to get on a trial. Almost a unique position in medicine for patients to research their own disease and then pursue treatments options that their own specialist doesn’t offer. We’ve muddied the waters with patient choice and giving patients the option of pretty ineffective injectables, but which are “convenient”. MS clinics should offer their patients Alemtuzumab, HSCT or cladribine - period. Other treatments should be removed from the prescribing list - they’ve had their day. Patients’ long term health should be the key driver. The ABN or equivalent international body should be producing instructions to neuros covering this. The overall approach should be “treat it like cancer” ie hit it early and hard. I can’t believe an oncologist would use a drug which only killed 30% of the cancer cells, or the surgeon only removed 30% of a cancerous tumour. Neurology needs to get its house in order. Needs to remove the “academic veil” it hides behind and become mainstream medicine ie it gets patients better / or prevents them getting worse.
Wow, dr G, when I look what is it that you do during annual check up, I realise that I live in stone age as my check ups last up to 3 minutes at best. When I go to my private neurologist (abroad), she takes her time, 20-40minutes, we talk, she looks at MRI scans herself etc,but even she doesn't cover everything that you listed.
Of all of this is not necessary for every person with MS. It is mix-and-match depending on at what stage the patient is at in their journey. There are many more issues that I didn't cover in this summary that frequently come up in an annual review including things like heat sensitivity, tinnitus, vertigo, Raynaud's phenomenon, etc.
Raynauds was present well before my diagnosis as was vertigo. I might as well stop my reviews and stick with your news letter. It helps me understand and accept my MS symptoms as real.
We stopped annual neurology meetings long ago as no benefit and alot of hassle getting to the hospital (Walsgrave Coventry). GP is out only medical support, no MS nurse access here. We are very advanced MS. No-one supports this stage, not MS Society, I'm trying to get them too but slow clunky internalised organisation. No link to anyone else at this stage. No-one tracks this stage, no data on how many at this stage, all off the radar. You are on your own with whatever the GP and district nurses can do and any palliative local resource and NHS CHC social care if you're bad enough to qualify, Awful state. At this most trying of times.
Just had my 3rd annual consultation. My consultant had switched in a deputy who clearly hadn't had time to read my notes. Lacked "chemistry" with the original consultant anyway though she did give me more than 15mins on the 2 previous occasions.
The MS Nurses can be excellent though, and an effective bridge between patient and consultant, though over-reliance on the nurses can make it feel to the patient as though the nurses are being used as gatekeepers. In my experience, everything I've ever asked through my MS Nurse has elicited an answer, either directly from her or through her after conferring with the consultant or other resources. It really shouldn't matter to the patient how the answer has been arrived at.
Your checklist is eerily similar to the PIP questionnaire! You don't appear to ask much about bladder & bowel which can appear as a background activity but a very revealing way to gauge progression as muscles atrophy.
I've seen the other side: Now on a BTKi trial, I'm being flooded with attention! 3 peg tests and 25m walks in 3 months. Clearly NHS diary systems are as a result of available resources as trial sponsors throw whatever resources necessary to ensure both reliable data and patient wellbeing.
Most of my bi annual reviews have started to get a bit shorter
First two were 1-1.5 hours
Then 45 mins
Last one was 30 mins
As I’m stable on Tysabri (2 years in) no new symptoms, no active disease there isn’t much to talk about bar investigating new treatments for my current symptoms which haven’t gone away since initial attack and probably never will.
I’m also quite active (I play football on the weekend) so haven’t had to do a grip, walk test since the initial consultation. I also feel quite sharp so haven’t felt the need for cognitive testing but can ask
This article is quite timely as my next review is in 4 weeks and MRI (also my first without contrast)
I think an annual review requires 20 mins. Ideally 30. I know we won’t get ideal. My reviews are stressful. I’m lucky if my appointment is an hour and half late. Generally 2 plus hours . This is because the neurologist gives the patient time. However if i have a long wait I start worrying that I’ll need the loo as I’m about to get called in. My legs get stiff but I don’t want to move fear of losing a seat. All these little things create anxiety and then I tend to feel rushed or guilty for taking more time with the neuro. Given the average MSer will take longer to get into the consulting room, remove any clothes if needed for an exam, all this chips into the time.
As for timed walk and peg test, never in 20 years. But these could be done with a physio or OT. Or those seem to have vanished, unless we are acute.
Wow! Can I come along to your sessions please. My neurologist can't get off the phone fast enough. I have asked to go back to face-to-face meetings. I've had the tests you mentioned but they were part of a clinical trial. I've never had an EDSS assessment done, only what I have found through the MS Register. No-one ever explained what it was. Good old Google and YouTube helped out there.
Your list of headings will be prove invaluable at my appointment next year, thank you. As to self-maintenance, I have found Dr Aaron Boster (YouTube videos) to be a good source of information and I follow his advice on diet, exercise, sleep hygiene. I would gladly complete questionnaires etc, and provide other data (I have a FitBit and Apple Watch monitoring my every move).
What annual review? It's been 20 months and counting (despite two neurological events, one damaging my eyesight permanently) When I am seen, I'd really appreciate the opportunity to contribute information remotely before the consultation and to have advance notice of how the consultation is going to be structured. I get very overwhelmed and confused when clinicians expect me to spontaneously answer their questions about something as important, complex and emotionally triggering as my largely unaddressed health issues. Because of the pass the parcel approach to MS healthcare I am constantly being told to "wait and ask your neurologist" about everything from bladder and pelvic pain to vision loss, yet there's only 15 minutes....
I definitely agree that more than 15 mins is needed but it would be nice to have an annual review at all! I haven’t had a consultant review since April 2021.
I've never done a timed 25m walk or the nine hole peg test in the 30 years I've had MS. Clearly some MS neurologists are better/ more thorough than others.
J, you and I are on the same timeline. I think I’ve done a timed walk approximately 3 times. I’ve also been retired for some time. I believe they did the pegboard for the disability retirement. 🌷
I have never been asked to do a timed walk or peg test. I haven't had any annual reviews since I had HSCT in 2014 against the neurologist's advice. Other specialist doctors ask me who my neurologist is. I reply that I don't think I have one.
Thank you for writing this, I’ve learnt more from you than I have from any neurologist, I’ve recently moved and never see the same neurologist in the last 6 years, sadly I don’t have an MS nurse as I’m not in any of the catchment areas , not sure if mine is advanced but my husband is my full time carer I have written to my Gp to request a DNR , the neurogist I saw has passed me over for my next visit to a neurological nurse, I have lots of friends with MS who I’ve also learnt a lot from, I have no motor function in my left Leg or foot,my bladder is unpredictable and my fatigue is off the scale, because I also have a swallowing problem I can’t have any meds to help my fatigue, but as I can’t walk I’m not eligible for any new treatments as they can’t see if I’ve made any improvements, sadly I’ve just been left to get to get on with things the best way I can as I know most of friends have as well, I do enjoy reading all your posts
Dear Beverly, I am too old for any treatments and it’s hard to find care. Outer areas here in the states are having the same issues. Glad you are here.🌷
I think it would be a great idea to make time in the annual review by completing some questions/assessments remotely before the 3D encounter. Tangentially, in regard to the gloomy last stops on your schema of the MS journey, I wonder if you expect the advent of highly effective DMTs will affect that journey? I don't suppose there can be that much data yet. But do you think it is now it more likely that pwMS will get a chance to reach the end of life without becoming severely disabled?
Yes, I make this point the podcast. Also look at the dotted line on the tube map that is under construction.
Thanks! will aim to listen to the podcast as well as read the article in future. The 'southbound' line under construction does not show on my computer, even when you click to see the full thing because the type is too small to read and trying to enlarge it doesn't seem to work. So thanks again for clarifying
Thanks - unfortunately the line under construction doesn't show fully on my computer, even when I click to enlarge the map. So thanks for clarification - in future will try to remember to listen to the podcast as well as read the written article.
15 minutes is fine for a patient like myself who has been in long term remission since HSCT and is medically trained so that I can report back on my muscle strength on the Oxford scale and tell the consultant that there is no need to check my hand eye Co-ordination because I’ve got a respectable golf handicap and my balance is good because I can do a quads stretch standing on one leg. Prior to HSCT my appointment always over ran 15 minutes because like wise I had a long list of all the things that weren’t right! When I was having a lot of problems half of the issues that you mentioned weren’t addressed and because of cognitive problems patients don’t even think to mention them at an appointment.
Really useful as ever. I would love to complete a questionnaire beforehand to focus the review in the right areas - if only that was available. I have to admit that I am hugely disappointed if I don’t see my actual neurologist as usually the member of the team is usually too junior and can’t answer my questions and the whole review feels wasted - so frustrating to have to wait another year.
I am going to use your heading for notes for my next review.
2 points:
I find your tube map depressing. A crystal ball showing your (grim) future. It’s very clever, but shows how MS ultimately negatively impacts pretty much every function of a person. Truly vile disease.
I’ve been on two trials (one with c.13 years of follow up and the other a much shorter trial). The follow up and care have both been excellent. Frequent bloods, EDSS tests and plenty of time to talk with the neuro / investigator / other members of the trial team. Such a contrast to the annual 15 min neuro appointment.
I have also wanted the tube map to be a fold-up map so that you don't see it all at once. In other words you can get to the later sections when you want to. I think I can make it work digitally.
Not sure if you realise the MS tube map could be repurposed as a map of human life. At some point we all have to face our own decline and inevitable demise.
Call me old fashioned, but the sort of demise I would have liked is a fatal heart attack at 80 while playing a round of golf (which happened to my uncle). You’ve said something like “hope I’m still running at 80”. I sit in neuro waiting rooms watching MS patients in their 40s in wheelchairs with their feet strapped in because of leg spasms and their carers asking if they need to go to toilet. I’m guessing at medical school the students opting for neurology take a special pill to harden their heart. No young person should be facing the sort of long grim demise which MS serves up.
I’m sure you didn’t mean it that way but your comment reads as a little mean.
With or without MS there are no guarantees against a long grim demise, as anyone in healthcare or who has had elderly relatives can attest.
It is about time we had well-safeguarded Assisted Dying in the UK though.
Emma, I did mean my comment to be mean. My aunt died of MS in her 50s and I’ve had MS for some 20 years. As Brits we are too polite. There’s a paucity of ambition in MS research / treatment. Prof G says it’s unrealistic to expect treatments to reverse damage done (but the MS societies never say that when fundraising) - the best we might expect is “slowing down” the neuro-degeneration / accruing disability. As a patient, should I be grateful for this? Neuros are paid by our taxes, but patients are offered a 15 min annual appointment and told to “self-manage”. If you have progressive MS you are sent on your way and told counselling might help, or referred to a continence adviser. You’re right about assisted dying. When I can’t brush my own teeth or cut my own toe nails I’ll be ready to meet my maker. Re-read the tube map again to really appreciate the horrors ahead. It’s a clever graphic, but surely what we (relatively young people) need are real solutions. My friend with cancer has had such a different experience - effective treatments, good follow-up and now living their life as before. Am I jealous - you bet I am.
Ian you know I am one of the most vocal proponents of treating early and effectively with immune reconstitution therapies. I may be ready to open the dotted grey line that leads to long-term remission or cure. I really do think a minority or pwMS treated with alemtuzumab, AHSCT and possibly cladribine may be cured. This line is cul-de-sac that bypasses the rest of the MS journey. I am on record as saying if I had MS I would want to be treated with alemtuzumab or AHSCT, which explains my position on this issue.
My issue isn’t with you, it’s the inconsistency in MSology. Different neuros are taking completely different approaches to treatment - escalation or induction. Many patients don’t read up on the disease (eg academic papers) so put their trust in the specialist (neuro). Many patients certainly won’t challenge the specialist. Many patients see a chemo type drug (Alemtuzumab) as too risky (they don’t see what MS does 20 years down the line), especially when their MS hasn’t really impacted on them, or they see pictures of young MSers playing tennis on MS Society websites. I got Alemtuzumab from my own research and writing (begging) the research team to get on a trial. Almost a unique position in medicine for patients to research their own disease and then pursue treatments options that their own specialist doesn’t offer. We’ve muddied the waters with patient choice and giving patients the option of pretty ineffective injectables, but which are “convenient”. MS clinics should offer their patients Alemtuzumab, HSCT or cladribine - period. Other treatments should be removed from the prescribing list - they’ve had their day. Patients’ long term health should be the key driver. The ABN or equivalent international body should be producing instructions to neuros covering this. The overall approach should be “treat it like cancer” ie hit it early and hard. I can’t believe an oncologist would use a drug which only killed 30% of the cancer cells, or the surgeon only removed 30% of a cancerous tumour. Neurology needs to get its house in order. Needs to remove the “academic veil” it hides behind and become mainstream medicine ie it gets patients better / or prevents them getting worse.
Alemtuzumab or AHSCT aside(not offered as first line to many)..Cladribine over CD20 therapies?
Wow, dr G, when I look what is it that you do during annual check up, I realise that I live in stone age as my check ups last up to 3 minutes at best. When I go to my private neurologist (abroad), she takes her time, 20-40minutes, we talk, she looks at MRI scans herself etc,but even she doesn't cover everything that you listed.
Of all of this is not necessary for every person with MS. It is mix-and-match depending on at what stage the patient is at in their journey. There are many more issues that I didn't cover in this summary that frequently come up in an annual review including things like heat sensitivity, tinnitus, vertigo, Raynaud's phenomenon, etc.
Raynauds was present well before my diagnosis as was vertigo. I might as well stop my reviews and stick with your news letter. It helps me understand and accept my MS symptoms as real.
We stopped annual neurology meetings long ago as no benefit and alot of hassle getting to the hospital (Walsgrave Coventry). GP is out only medical support, no MS nurse access here. We are very advanced MS. No-one supports this stage, not MS Society, I'm trying to get them too but slow clunky internalised organisation. No link to anyone else at this stage. No-one tracks this stage, no data on how many at this stage, all off the radar. You are on your own with whatever the GP and district nurses can do and any palliative local resource and NHS CHC social care if you're bad enough to qualify, Awful state. At this most trying of times.
Mark, I’m sorry. This sounds really trying. I’m not in England, but I know about being on our own. 🌷
Interesting subject! Contentious certainly!
Just had my 3rd annual consultation. My consultant had switched in a deputy who clearly hadn't had time to read my notes. Lacked "chemistry" with the original consultant anyway though she did give me more than 15mins on the 2 previous occasions.
The MS Nurses can be excellent though, and an effective bridge between patient and consultant, though over-reliance on the nurses can make it feel to the patient as though the nurses are being used as gatekeepers. In my experience, everything I've ever asked through my MS Nurse has elicited an answer, either directly from her or through her after conferring with the consultant or other resources. It really shouldn't matter to the patient how the answer has been arrived at.
Your checklist is eerily similar to the PIP questionnaire! You don't appear to ask much about bladder & bowel which can appear as a background activity but a very revealing way to gauge progression as muscles atrophy.
I've seen the other side: Now on a BTKi trial, I'm being flooded with attention! 3 peg tests and 25m walks in 3 months. Clearly NHS diary systems are as a result of available resources as trial sponsors throw whatever resources necessary to ensure both reliable data and patient wellbeing.
Fabulous newsletter and comments. Wish they had a "tube map" 35 years ago.
Most of my bi annual reviews have started to get a bit shorter
First two were 1-1.5 hours
Then 45 mins
Last one was 30 mins
As I’m stable on Tysabri (2 years in) no new symptoms, no active disease there isn’t much to talk about bar investigating new treatments for my current symptoms which haven’t gone away since initial attack and probably never will.
I’m also quite active (I play football on the weekend) so haven’t had to do a grip, walk test since the initial consultation. I also feel quite sharp so haven’t felt the need for cognitive testing but can ask
This article is quite timely as my next review is in 4 weeks and MRI (also my first without contrast)
I think an annual review requires 20 mins. Ideally 30. I know we won’t get ideal. My reviews are stressful. I’m lucky if my appointment is an hour and half late. Generally 2 plus hours . This is because the neurologist gives the patient time. However if i have a long wait I start worrying that I’ll need the loo as I’m about to get called in. My legs get stiff but I don’t want to move fear of losing a seat. All these little things create anxiety and then I tend to feel rushed or guilty for taking more time with the neuro. Given the average MSer will take longer to get into the consulting room, remove any clothes if needed for an exam, all this chips into the time.
As for timed walk and peg test, never in 20 years. But these could be done with a physio or OT. Or those seem to have vanished, unless we are acute.
Wow! Can I come along to your sessions please. My neurologist can't get off the phone fast enough. I have asked to go back to face-to-face meetings. I've had the tests you mentioned but they were part of a clinical trial. I've never had an EDSS assessment done, only what I have found through the MS Register. No-one ever explained what it was. Good old Google and YouTube helped out there.
Your list of headings will be prove invaluable at my appointment next year, thank you. As to self-maintenance, I have found Dr Aaron Boster (YouTube videos) to be a good source of information and I follow his advice on diet, exercise, sleep hygiene. I would gladly complete questionnaires etc, and provide other data (I have a FitBit and Apple Watch monitoring my every move).
What annual review? It's been 20 months and counting (despite two neurological events, one damaging my eyesight permanently) When I am seen, I'd really appreciate the opportunity to contribute information remotely before the consultation and to have advance notice of how the consultation is going to be structured. I get very overwhelmed and confused when clinicians expect me to spontaneously answer their questions about something as important, complex and emotionally triggering as my largely unaddressed health issues. Because of the pass the parcel approach to MS healthcare I am constantly being told to "wait and ask your neurologist" about everything from bladder and pelvic pain to vision loss, yet there's only 15 minutes....