This patient expected more from his follow-up consultation than I could offer him. What is the solution? What would you recommend to address the problem of needing more time?
I really do believe that it is the neurologists job to spend the appropriate time with the patient- if anyone thinks having a scary disease like ms and only seeing a neuro for 15 mins twice a year is enough then they clearly don’t understand the impact of this disease on a persons whole life. My cancer (oncology) nursing friends often say to me that a cancer diagnosis and treatment is better than a lifetime of MS hanging over you and deterioration. A cancer patient wouldn’t be told 15 mins is all we are giving you, off you go for 6 months and suck it up.
Twice a year? im sure its not only me just has an annal review.
but you point comparng cancer with ms is so well made - there's no bell to ring when we get told no activity on mri - simply because we know its not the end of the story
My oncology appointments are actually the shortest of all the appointments I have, much to my relief. Getting the diagnosis of cancer took years (NHS negligence), where my MS diagnosis was done in a month. The cancer support appears more joined up, and treatment followed better however I personally have no faith in the NHS due to repeated failures on their part to do basic cancer investigations for me.
And sorry, yes I would rather have a long life time of MS hanging over me than that of an aggressive late diagnosed cancer with a potential poor outcome, with a very low 5 year survival rate, not to mention the long term health problems I have due to the aggressive cancer treatment, something that shouldn't have been need.
I think we’re in dangerous territory comparing what’s worse. Personally, my MS has been long and slow burn in some ways. I’d take it over a later cancer diagnosis. Where my sisters MS, diagnosis, to death under 5 years. Aggressive as was side effects of Meds. So some similarities for her to cancer. You are right, it’s about speedy diagnosis to get help, neither myself or sister got this.
I am sorry you lost your sister so quickly to MS. As you demonstrate we are all different and comparisons are dangerous.
An appointment needs to be long enough to get the information required for either investigations and diagnosis or to treat the person to give them the best quality of life ( and that can be referring on to a different consultant, or pointing the GP on the correct course for that patient).
HCPs need flexibility in so much of the health care of patients, and not restricted by time or ridged pathway.
But how long is long enough? The ABN (Association of British Neurologists) recommends 30 minutes for a new patient consultation and 15 minutes for a follow-up consultation. This has been adopted by the NHS so a typical 4 hour clinic may have 4 new patient slots and 8 follow-up patients. Giving someone an hour annual follow-up consultation will clogs up the system and deprive other patients of their time.
You know what- it’s the same as teaching, I can churn students out through their year 12 assignments and completely miss that they are in struggle town, but they scrape through. Or I can take a little more time and recognise where they need help and that what they really need may be different to another student in the class. That extra 5-10 mins of one on one in a class can impact that students whole life. You can select and read when patients need more, just as we can students. Teachers can’t say sorry I have 28 students in a 60 min lesson, I can only help you for 2 mins today and the rest will have to wait until our next lesson. If they need extra help I don’t turn my back, I follow up with them before our next lesson, I don’t knowingly ever let a student struggle, in both their emotional and academic life. This is why I can’t get my head around the 15 mins and that’s it once or twice a year and no further help.
Today: palliative care Prof for chemo induced peripheral neuropathy pain : he had a young anesthestist sitting in, we covered my cancer history/treatment (kitchen sink thrown at me), my general health, joked about insulting the room for the difference between a curtosy title of doctor and those entitled to use Dr (PhD) and where an MD stood, plus a surgeon saying my collapse bowel obstruction was "Impressive" on X-Ray, never a word you want to hear from a surgeon. I was given advice on managing the peripheral neuropathy pain, affecting my scalp, an issue since my hair started to grow back, and timings for a return visit.
So consultation for me, plus a teaching session all done in 10 mins, and I left happy and supported. Not everyone needs much time just but others appointments need more. It can't be prescriptive.
The bottom line is that medics and HCP need to have more control over their appointments and patients need to be more flexible over the exact timing of the appointment, they need to be ready to wait in case the person in front needs longer.
Give that a lot of us are slow to walk to waiting room to clinical room, and then potentially cognitively slow to communicate, plus if we need to remove any clothing, this all adds to consulting time. I think 20 mins on a follow up. Or the option of a Zoom type meeting or call.
I would say "so what?" to the recommendation of 15 min follow up appointments recommended by the ABN. What does that mean in the real world?
If the Neurologist is slick at eliciting history and symptoms from patients with very varied degrees of understanding of their illness, or if the clinician is burnt out and wanting to avoid challenging questions, if the neurologist is backed by a team nurses, psychologists and OT's etc then maybe 15 mins would about do it. If the ABN sets the bar low then pressured clinicians will more happily slide underneath it and not fight for more resources.
It is really about job planning and costs. The NHS does it budgets and workforce planning based on these sorts of estimates. So it actually means a lot from the business and management side of the NHS.
Yes, but some other medical specialties have managed to carve out relatively bigger slices of the budget cake. This may be historical from when much of neurology seemed to be diagnose, label and leave. If persons with MS (and other neurological conditions) have ALL to benefit from the research and progress in diagnosis, treatment and management then this has to be delivered appropriately to ALL. 15 minutes once a year seems extremely unlikely to deliver optimum outcomes.
So much of MS research appears to be pharmaceutically driven (and funded). I wonder if many studies have looked prospectively at different levels of clinical input. The current medication costs are such that they must surely be very significant compared with clinician time?
I do agree with your post. I feel that MS is viewed with indifference with money and lack of understanding being the shocking reasons. When was the last time that a cancer patient was told to wait and see before treatment was given. That is what happened to me and probably many others leaving me with a lonely existence in a wheelchair barely worth it. My wife sort of summed it up in her own way and just walked out on me
I wish there was also a MOT for those on (long-term) immunosuppressive DMTs. I think perhaps patients leave it until their follow-up with their neuro to discuss these issues because GPs are sometimes unsure/reluctant to treat MS-releated problems or we are told to discuss them with our neuro team.
Does anyone know of any (brief, easily absorbed) material about immunosuppressive DMTs that my GP & MS nurses might actually get some info from? Not sure anyone at my surgery or MS nursing team understands and/or cares…
The management of multiple sclerosis symptoms is often compartmentalized, and patients are referred to specialists other than neurologists: for urinary problems, a urologist; for foot drop, a rehabilitation doctor, etc. The consultation you describe is the ideal consultation with a neurologist who is very involved and very up to date with all the latest research. I think that the length of the consultation is not everything: the quality of the therapeutic relationship must be good enough for the patient to dare to talk about his or her intimate problems, and the neurologist must be very involved. These conditions are not always met.
The patient in my opinion has every right to expect more. So much confusion tears and disillusionment prevails in my journey with MS. I find it astonishing that patients are expected to almost self diagnose their symptoms of a disease that even experts do not understand. Yesterday I had a walking clinic appointment which I had great hope for. The hope of getting Famprya which has been highly effective for many lucky MSers I know making them walk and balance. It’s is a postcode lottery! Additionally for this clinic I was hoping for Botox in my leg. I returned home to Kent form London at 4pm after a start of 5am disillusioned upset and resigned to a crap lonely life in a wheelchair. I was told at the walking clinic that I did not have spasticity even though I had nearly all the symptoms as in its description despite being told for years that my spasticity was getting worse!! Everyone’s treatment is based on different opinions of different neuros and that is wrong!! If you have money though your MS will probably be not much of a problem and that is nothing short of disgraceful! I feel like giving up and existing the rest of my lonely “unimportant” life
I don’t even know how/where to pay for help. I don’t want hsct abroad so what neuro care is privately accessible? I’m willing to pay for more than 15 min a year :(
(1). I have a theory that the lesions we get while untreated or on copaxone are not "benign" when they don't cause immediate clinical symptoms. Rather, they lurk in the background and, as we get older and our neuronal reserve declines (even in our 30s) we start to get symptoms related to those lesions that were supposedly dormant. My MS has been pretty much in remission since 2012 but symptoms are worsening - that's just MS. They're probably worsening less since I switched to a stronger treatment and I believe further progression has been reduced at least.
(2). Zebras and horses. I think you brought up this analogy previously. Not everything is MS or exclusively MS (although many things can make MS worse). I'm coming up for a month 1 review on my CPAP machine - it turns out there are a LOT of things that contribute to MS symptoms. We need a lot more water than "normal" people. We need a lot more sleep than "normal" people. And if we have sleep apnoea it can make all the other symptoms a lot worse. In the month since I've had the CPAP I have slept less during the day, I haven't caught myself falling asleep while doing other stuff, my concentration span and attention span have shot up. If I nap it's 20 - 60 mins, not several hours, and I wake up actually feeling refreshed (it has been SO long since that happened).
(3). Neurophysio. I'm in the Canary Islands, not the UK, referrals to physio here can take years and aren't very good. HOWEVER - we have a local MS association with a team of neuro-physiotherapists at their HQ and they've changed my life. I've had physio 3x per week for 10 months now - I'm lucky I'm very mobile so it's basically workouts with no need for massage, just paced for someone in their late 40s who's had MS for 20+ years and isn't particularly fit. It's life-changing stuff if you can stick with it.
I'm also on mirabegron, it takes a month or two to kick in but is worth the wait. I take pads with me in case of minor drips but it's more as a comfort thing, mirabegron means that "empty means empty".
I also use a peristeen - I recommend using a water-based lubricant as well for insertion, it makes life much easier - the peristeen gives you back control. No need to wait 12 hours or 24 hours or 36 hours or if the laxatives even work at all - the peristeen you can set 90 minutes aside (including the shower afterwards) and you're done for 24 - 48 hours and then you do the same again, every day or every other day, when it's convenient for YOU, rather than when your guts remember to tell your brain to run to the loo. Regaining that control over your own body is mentally so strengthening.
ED - yeah me too - I have some cialis but it gives me stomach ache so I have to balance when I want to take it.
For the rest you need to tell patients to subscribe to MS Selfie and to check out videos from the likes of Dr. Aaron Boster - where they explain all the stuff around MS as well as going into the treatments themselves. We have to learn to be our own advocates and have to learn to access the resources that are out there. There are also a number of very useful facebook groups - the MS UK Facebook group is enormous and a veritable support network - plus the groups for whatever treatment they are on.
Unfortunately I think it's unrealistic to ask people to take on more on their own. These are not drs. Having all these things at once is stressful and overwhelming. And if you have cognitive impact that's not really fair either.
BEST CASE:
Someone treated with high efficacy DMT early with Low EDSS NEDA and no PIRA. This is your best case. Let's talk about what happens then:
1) You still have to manage your energy daily more than most. Overthinking leads to physical fatigue. If you're healthy you probably have work and/or childcare responsibilities and do not have energy left for all this management.
2) Even if you were unemployed with no kids, the minute any other doctor hears you have MS if any issue is remotely hard to figure out their visits are short too and they shrug and say "it must be neurological". Even if you KNOW it's not neurological, even if you're the most educated patient in the world, there's not much you can do when a doctor isn't motivated to find the answer for you, and because it's hard and they haven't been able to treat it it's easier for them to say "ask your neurologist, it's not me" and they send you on you way. It's not uncommon for an MS patient to have to go through four specialists (GI, physiatrist, endocrinology, literally any specialty) before they find one willing to investigate the cause. This shouldn't be the case but it is. While not recommended I can tel you I have gotten significantly better care and outcomes when I do not mention MS at all. This is pretty awful to say but it's true and I know too many patients with similar experiences.
The system is failing MS patients when the answer is to have them take on more of a burden than they already do. Agree there are many patients who could do more, which is where the MS Selfie is fabulous, and the concept of marginal gains, but it is unrealistic to expect more self management from most.
Yes to annual MOTs combined with self management, not everyone can self manage and they need help. The ones that are self managing sometimes just need a brief check to ensure they are on the right path. The NHS needs to be more flexible on appointment times, some people only need 5 mins others need an hour. Restricting appointment times, means patients health issues are not fully addressed, they deteriorate or are left to suffer, which is against the basic principle of "do no harm". It also requires more appointments, with a person that is less well, and takes longer to get them healthier again. Or it leaves that person with greater disability, earlier than they should have had, so requiring more input and more treatment or support, which is more expensive to the NHS in the long term. The current NHS model is short termist and fire fighting rather than proactive and helps no one, but its the end user, the patient, that comes of worst in all of this
The impression I have is that the MS disease process does not directly cause osteopenia/porosis, but that it results in things (vitamin D deficiencies, treatments, disability) that cause it. Is that accurate?
It doesn't matter much why it's an issue, but it does help point to the right responses. Even though my EDSS is very low, I saw a neurorehabilitative PT early on to talk about preventing progression and things like bone/muscle loss. I had to push for that myself; since I wasn't having mobility issues, my doctor didn't suggest it.
Self management may be unrealistic for many people - MS isn't the most pressing issue in my life. Kids (now teens) with additional needs, aging parents, other health issues and life events, work, family life etc etc have all got in the way of being able to prioritise managing my MS. Besides that the impact of my MS on cognitive function means I struggle to get my head round the info provided by you and others. I'm fortunate that so far I seem to be doing ok on Ocrevus which I've been on for nearly 5 years.
I think the main issue here is the difference in perspective.
It's not about the number of minutes. As a professional, I think 35 min is a really good effort - given time restrictions, other patients, other tasks, etc.
But as a patient, the fact that there is a timeframe can feel very restrictive.
MS affects your life in so many ways. And it change so much. What you told your neuro the previous time, may not be true any more. Before I see my neuro, I always make a list of things I want to discuss. But given the limited amount of time, I end up deleting most of the items (not urgent enough/ possibly something the neuro cannot help me with, so why waste time on that/hasn't happened for a few months, so let's just hope it's ok/etc.). I also read a lot about new therapies, supplements, diet, life style,... and I like to see what my neuro thinks before trying it (or after I've started them).
My neuro really takes her time for me (flipside: she always has a backlog), but we only discuss a few things at a time, and most things, I have to find out on my own, or from other patients.
And sometimes she only has 15min, or a bad day. That happens.
And sometimes I don't feel like talking much, and then I feel like I've wasted an appointment. That happens too.
As MS is so complex and individual and NHS resources so limited, would it make sense for other people in the team (MS nurses or junior neurologists) to screen patients several months before their yearly appointments - like a triage-type thing? It seems to me that things just need much better communication, coordination and cohesion. I haven't seen the neurologist for two years and it will be nearly 3 years by the time my appointment comes, as i'm mostly well and NEDA according to my MRI's, however there is so much scope for people to fall through the net. 1)MRI's must be coordinated so that reports are in good time to discuss in the yearly appointment - these are often not in sync and then you don't receive any confirmation on your MRI results and this causes so much anxiety. If something needs discussing then it has to be possible to have the MRI before the appointment otherwise you could be waiting 11 months plus to find out/discuss!!! 2)Patients reminded to do their online EDSS before the meeting 3)MS nurse/neurology team to call patients to discuss previous 12 months, encourage patients to keep a diary of issues, point patients to other services and self help before the appointment and in good time to discuss whether it has been resolved or needs escalation 4)Availability of the neurology team to assess and refer to specialist services as needed, rather than storing up for one meeting a year? 5) phone call can support those with cognitive challenges to prepare for the appointment and help them to articulate/make notes for the neurologist which they may otherwise forget or struggle to communicate 6) at a triage phone call, the team could assess how long the appointment will need to be, 10 minutes or 1 hour, so that the right patients are seen for longer. It's very hard for MS patients to completely self-manage, as even with MS selfie which is fabulous, we can't know which symptoms are MS and which may not be and these appointments need to allow time for reassurance from a trusted expert.
perhaps the solution shouldn't be to add more burden to patients but to get patients and healthcare providers the resources they deserve. I'm sure this is something patients would gladly support. No one wants their wonderful euros to burn out either. I realize I'm talking about the NHS so probably a pipe dream but let's call out the real problem at least.
Or after the appointment the patients is referred immediately to supporting team for mop up questions and referrals and information etc. Which would require a mop up team in stand by.
Like others, my GP doesn’t understand the mechanics of Ocrevus so anything that might be linked to that gets referred back to the MS team. However they have been good at managing my sleep & bowels via diet currently. I do ‘save up’ things to talk to my neurologist about in my annual review as it just seems easier to do it all in one go. The kind of questions I have aren’t answered via the CNS route so consultant it is. Is the solution to employ/train more neurologists do there is increased capacity? Does providing telehealth appointments allow increased appointment time so maybe offering these first before F2F or alternating the two? Just reading your reply to this pt shows me the value of a neurologist managing symptoms of MS over a GP because most of those in my experience would be almost fobbed off with “it’s your MS” 🤷♀️. Could each GP practise have a MS specialist or neurology specialist that has additional training in the way they have respiratory specialists? Sorry that’s rambling. Heat brain
What about clemestine? Thats used in ms trials in the uk, but america found it accelerated ms progression and I myself with no walking issues felt like jelly when tried (being an OTC medication). Iv tried it twice and said never again that scared me.
No. Without phase 3 trial data we have no idea if it works or not. As a potential remyelinating agent is may only be needed for a short period of time, i.e. weeks to months, and not long-term.
But could that also do manage to the brain? I didn’t read the two articles you attached but I am guessing they are highlighting the negative impact of antihistamines on brain health?
"As a second-generation antihistamine, fexofenadine exhibits reduced affinity for cholinergic and α-adrenergic receptors, which results in minimal anticholinergic effects. This drug also demonstrates high specificity for H1 receptors and lacks anticholinergic activity."
If you take too much of the 2nd gen antihistamines they can cause anticholinergic effects but as long as you stick to the doses they don't cross the blood-brain barrier as much as the 1st generation antihistamines did.
The second and third generation antihistamines that are designed not to cross the blood-brain-barrier. Unfortunately the G-protein coupled receptors, of which the muscarinic acetyl cholinergic receptors and histamine receptors are members, are quite similar to each other hence the cross-reactivity and overlaps of side effects.
Thank you for all your help. It’s really hard to try and do everything that’s best for your body/help prevent progression of MS. If I don’t take the certirizine I end up with watery itchy eyes and sometimes itchy skin (unrelated to the hay fever)
Your patient should thank his lucky stars he has you as his Neurologist! At my last consultation, my Neurologist hardly looked at me, while sat on the other side of a large room with a mask on. Although he didn't have much conversation, I could hardly hear what he was saying. It was a disaster, and I have asked to be referred to somewhere else. On the point regarding Burn Out MS, this was mentioned to me by a previous Neurologist about 10 years ago. She said she strongly believed that MS 'flat-lines' after a period. It gave me real hope. And there hasn't been too much of that!
Gavin, trying to bring your attention to a comment on the previous post re HSCT for PPMS. I posted the question that you kindly took the time to answer. I’m still awaiting the radiographers report on a recent MRI. If there is any active inflammation and/or new lesions since earlier MRI is there hope then?
I appreciate the true definition of PPMS would mean there is no activity, but I just want to be clear on how to proceed if there is something active/new on MRI, even if symptoms appear to be progressive.
The data on AHSCT in PPMS is just not there. Most trials have excluded PPMS. And many centre will not transplant patients with PPMS or SPMS because the results are inconsistent.
The NHS does not cover AHSCT for PPMS regardless of activity. However, many private centres will offer AHSCT for PPMS with active disease. However, if you have activity you would eligible for ocrelizumab under NHSE guidelines.
I really do believe that it is the neurologists job to spend the appropriate time with the patient- if anyone thinks having a scary disease like ms and only seeing a neuro for 15 mins twice a year is enough then they clearly don’t understand the impact of this disease on a persons whole life. My cancer (oncology) nursing friends often say to me that a cancer diagnosis and treatment is better than a lifetime of MS hanging over you and deterioration. A cancer patient wouldn’t be told 15 mins is all we are giving you, off you go for 6 months and suck it up.
That’s just the way it feels as a patient
Twice a year? im sure its not only me just has an annal review.
but you point comparng cancer with ms is so well made - there's no bell to ring when we get told no activity on mri - simply because we know its not the end of the story
Me too. Ends up nearer 18 months. What irritates me is being sent for things like nerve conduction tests and then having to chase results.
I’m annual too.. I think in the UK that’s pretty common. ☹️
My oncology appointments are actually the shortest of all the appointments I have, much to my relief. Getting the diagnosis of cancer took years (NHS negligence), where my MS diagnosis was done in a month. The cancer support appears more joined up, and treatment followed better however I personally have no faith in the NHS due to repeated failures on their part to do basic cancer investigations for me.
And sorry, yes I would rather have a long life time of MS hanging over me than that of an aggressive late diagnosed cancer with a potential poor outcome, with a very low 5 year survival rate, not to mention the long term health problems I have due to the aggressive cancer treatment, something that shouldn't have been need.
What a horrid double whammy you’ve been dealt.
I think we’re in dangerous territory comparing what’s worse. Personally, my MS has been long and slow burn in some ways. I’d take it over a later cancer diagnosis. Where my sisters MS, diagnosis, to death under 5 years. Aggressive as was side effects of Meds. So some similarities for her to cancer. You are right, it’s about speedy diagnosis to get help, neither myself or sister got this.
I am sorry you lost your sister so quickly to MS. As you demonstrate we are all different and comparisons are dangerous.
An appointment needs to be long enough to get the information required for either investigations and diagnosis or to treat the person to give them the best quality of life ( and that can be referring on to a different consultant, or pointing the GP on the correct course for that patient).
HCPs need flexibility in so much of the health care of patients, and not restricted by time or ridged pathway.
But how long is long enough? The ABN (Association of British Neurologists) recommends 30 minutes for a new patient consultation and 15 minutes for a follow-up consultation. This has been adopted by the NHS so a typical 4 hour clinic may have 4 new patient slots and 8 follow-up patients. Giving someone an hour annual follow-up consultation will clogs up the system and deprive other patients of their time.
Please see: https://cdn.ymaws.com/www.theabn.org/resource/collection/DFE4DB8D-9E8C-4F56-A829-608374E2CA45/ABN_2019_Job_Planning_Document.pdf
You know what- it’s the same as teaching, I can churn students out through their year 12 assignments and completely miss that they are in struggle town, but they scrape through. Or I can take a little more time and recognise where they need help and that what they really need may be different to another student in the class. That extra 5-10 mins of one on one in a class can impact that students whole life. You can select and read when patients need more, just as we can students. Teachers can’t say sorry I have 28 students in a 60 min lesson, I can only help you for 2 mins today and the rest will have to wait until our next lesson. If they need extra help I don’t turn my back, I follow up with them before our next lesson, I don’t knowingly ever let a student struggle, in both their emotional and academic life. This is why I can’t get my head around the 15 mins and that’s it once or twice a year and no further help.
Today: palliative care Prof for chemo induced peripheral neuropathy pain : he had a young anesthestist sitting in, we covered my cancer history/treatment (kitchen sink thrown at me), my general health, joked about insulting the room for the difference between a curtosy title of doctor and those entitled to use Dr (PhD) and where an MD stood, plus a surgeon saying my collapse bowel obstruction was "Impressive" on X-Ray, never a word you want to hear from a surgeon. I was given advice on managing the peripheral neuropathy pain, affecting my scalp, an issue since my hair started to grow back, and timings for a return visit.
So consultation for me, plus a teaching session all done in 10 mins, and I left happy and supported. Not everyone needs much time just but others appointments need more. It can't be prescriptive.
The bottom line is that medics and HCP need to have more control over their appointments and patients need to be more flexible over the exact timing of the appointment, they need to be ready to wait in case the person in front needs longer.
Give that a lot of us are slow to walk to waiting room to clinical room, and then potentially cognitively slow to communicate, plus if we need to remove any clothing, this all adds to consulting time. I think 20 mins on a follow up. Or the option of a Zoom type meeting or call.
I would say "so what?" to the recommendation of 15 min follow up appointments recommended by the ABN. What does that mean in the real world?
If the Neurologist is slick at eliciting history and symptoms from patients with very varied degrees of understanding of their illness, or if the clinician is burnt out and wanting to avoid challenging questions, if the neurologist is backed by a team nurses, psychologists and OT's etc then maybe 15 mins would about do it. If the ABN sets the bar low then pressured clinicians will more happily slide underneath it and not fight for more resources.
It is really about job planning and costs. The NHS does it budgets and workforce planning based on these sorts of estimates. So it actually means a lot from the business and management side of the NHS.
Yes, but some other medical specialties have managed to carve out relatively bigger slices of the budget cake. This may be historical from when much of neurology seemed to be diagnose, label and leave. If persons with MS (and other neurological conditions) have ALL to benefit from the research and progress in diagnosis, treatment and management then this has to be delivered appropriately to ALL. 15 minutes once a year seems extremely unlikely to deliver optimum outcomes.
So much of MS research appears to be pharmaceutically driven (and funded). I wonder if many studies have looked prospectively at different levels of clinical input. The current medication costs are such that they must surely be very significant compared with clinician time?
I do agree with your post. I feel that MS is viewed with indifference with money and lack of understanding being the shocking reasons. When was the last time that a cancer patient was told to wait and see before treatment was given. That is what happened to me and probably many others leaving me with a lonely existence in a wheelchair barely worth it. My wife sort of summed it up in her own way and just walked out on me
I wish there was also a MOT for those on (long-term) immunosuppressive DMTs. I think perhaps patients leave it until their follow-up with their neuro to discuss these issues because GPs are sometimes unsure/reluctant to treat MS-releated problems or we are told to discuss them with our neuro team.
Does anyone know of any (brief, easily absorbed) material about immunosuppressive DMTs that my GP & MS nurses might actually get some info from? Not sure anyone at my surgery or MS nursing team understands and/or cares…
https://msselfie.co.uk/wp-content/uploads/2024/09/Vol-1_Deciding-on-your-treatment-strategy_Final.pdf
Thank you!
The management of multiple sclerosis symptoms is often compartmentalized, and patients are referred to specialists other than neurologists: for urinary problems, a urologist; for foot drop, a rehabilitation doctor, etc. The consultation you describe is the ideal consultation with a neurologist who is very involved and very up to date with all the latest research. I think that the length of the consultation is not everything: the quality of the therapeutic relationship must be good enough for the patient to dare to talk about his or her intimate problems, and the neurologist must be very involved. These conditions are not always met.
The patient in my opinion has every right to expect more. So much confusion tears and disillusionment prevails in my journey with MS. I find it astonishing that patients are expected to almost self diagnose their symptoms of a disease that even experts do not understand. Yesterday I had a walking clinic appointment which I had great hope for. The hope of getting Famprya which has been highly effective for many lucky MSers I know making them walk and balance. It’s is a postcode lottery! Additionally for this clinic I was hoping for Botox in my leg. I returned home to Kent form London at 4pm after a start of 5am disillusioned upset and resigned to a crap lonely life in a wheelchair. I was told at the walking clinic that I did not have spasticity even though I had nearly all the symptoms as in its description despite being told for years that my spasticity was getting worse!! Everyone’s treatment is based on different opinions of different neuros and that is wrong!! If you have money though your MS will probably be not much of a problem and that is nothing short of disgraceful! I feel like giving up and existing the rest of my lonely “unimportant” life
I don’t even know how/where to pay for help. I don’t want hsct abroad so what neuro care is privately accessible? I’m willing to pay for more than 15 min a year :(
A few things.
(1). I have a theory that the lesions we get while untreated or on copaxone are not "benign" when they don't cause immediate clinical symptoms. Rather, they lurk in the background and, as we get older and our neuronal reserve declines (even in our 30s) we start to get symptoms related to those lesions that were supposedly dormant. My MS has been pretty much in remission since 2012 but symptoms are worsening - that's just MS. They're probably worsening less since I switched to a stronger treatment and I believe further progression has been reduced at least.
(2). Zebras and horses. I think you brought up this analogy previously. Not everything is MS or exclusively MS (although many things can make MS worse). I'm coming up for a month 1 review on my CPAP machine - it turns out there are a LOT of things that contribute to MS symptoms. We need a lot more water than "normal" people. We need a lot more sleep than "normal" people. And if we have sleep apnoea it can make all the other symptoms a lot worse. In the month since I've had the CPAP I have slept less during the day, I haven't caught myself falling asleep while doing other stuff, my concentration span and attention span have shot up. If I nap it's 20 - 60 mins, not several hours, and I wake up actually feeling refreshed (it has been SO long since that happened).
(3). Neurophysio. I'm in the Canary Islands, not the UK, referrals to physio here can take years and aren't very good. HOWEVER - we have a local MS association with a team of neuro-physiotherapists at their HQ and they've changed my life. I've had physio 3x per week for 10 months now - I'm lucky I'm very mobile so it's basically workouts with no need for massage, just paced for someone in their late 40s who's had MS for 20+ years and isn't particularly fit. It's life-changing stuff if you can stick with it.
I'm also on mirabegron, it takes a month or two to kick in but is worth the wait. I take pads with me in case of minor drips but it's more as a comfort thing, mirabegron means that "empty means empty".
I also use a peristeen - I recommend using a water-based lubricant as well for insertion, it makes life much easier - the peristeen gives you back control. No need to wait 12 hours or 24 hours or 36 hours or if the laxatives even work at all - the peristeen you can set 90 minutes aside (including the shower afterwards) and you're done for 24 - 48 hours and then you do the same again, every day or every other day, when it's convenient for YOU, rather than when your guts remember to tell your brain to run to the loo. Regaining that control over your own body is mentally so strengthening.
ED - yeah me too - I have some cialis but it gives me stomach ache so I have to balance when I want to take it.
For the rest you need to tell patients to subscribe to MS Selfie and to check out videos from the likes of Dr. Aaron Boster - where they explain all the stuff around MS as well as going into the treatments themselves. We have to learn to be our own advocates and have to learn to access the resources that are out there. There are also a number of very useful facebook groups - the MS UK Facebook group is enormous and a veritable support network - plus the groups for whatever treatment they are on.
Unfortunately I think it's unrealistic to ask people to take on more on their own. These are not drs. Having all these things at once is stressful and overwhelming. And if you have cognitive impact that's not really fair either.
BEST CASE:
Someone treated with high efficacy DMT early with Low EDSS NEDA and no PIRA. This is your best case. Let's talk about what happens then:
1) You still have to manage your energy daily more than most. Overthinking leads to physical fatigue. If you're healthy you probably have work and/or childcare responsibilities and do not have energy left for all this management.
2) Even if you were unemployed with no kids, the minute any other doctor hears you have MS if any issue is remotely hard to figure out their visits are short too and they shrug and say "it must be neurological". Even if you KNOW it's not neurological, even if you're the most educated patient in the world, there's not much you can do when a doctor isn't motivated to find the answer for you, and because it's hard and they haven't been able to treat it it's easier for them to say "ask your neurologist, it's not me" and they send you on you way. It's not uncommon for an MS patient to have to go through four specialists (GI, physiatrist, endocrinology, literally any specialty) before they find one willing to investigate the cause. This shouldn't be the case but it is. While not recommended I can tel you I have gotten significantly better care and outcomes when I do not mention MS at all. This is pretty awful to say but it's true and I know too many patients with similar experiences.
The system is failing MS patients when the answer is to have them take on more of a burden than they already do. Agree there are many patients who could do more, which is where the MS Selfie is fabulous, and the concept of marginal gains, but it is unrealistic to expect more self management from most.
Thank you for listening to my TED talk.
Yes to annual MOTs combined with self management, not everyone can self manage and they need help. The ones that are self managing sometimes just need a brief check to ensure they are on the right path. The NHS needs to be more flexible on appointment times, some people only need 5 mins others need an hour. Restricting appointment times, means patients health issues are not fully addressed, they deteriorate or are left to suffer, which is against the basic principle of "do no harm". It also requires more appointments, with a person that is less well, and takes longer to get them healthier again. Or it leaves that person with greater disability, earlier than they should have had, so requiring more input and more treatment or support, which is more expensive to the NHS in the long term. The current NHS model is short termist and fire fighting rather than proactive and helps no one, but its the end user, the patient, that comes of worst in all of this
What do you mean by MS-related osteoprosis?
People with MS are much more likely to have osteopaenia and osteoporosis. Please see:
https://journals.sagepub.com/doi/10.1177/1352458512453362
The impression I have is that the MS disease process does not directly cause osteopenia/porosis, but that it results in things (vitamin D deficiencies, treatments, disability) that cause it. Is that accurate?
It doesn't matter much why it's an issue, but it does help point to the right responses. Even though my EDSS is very low, I saw a neurorehabilitative PT early on to talk about preventing progression and things like bone/muscle loss. I had to push for that myself; since I wasn't having mobility issues, my doctor didn't suggest it.
Self management may be unrealistic for many people - MS isn't the most pressing issue in my life. Kids (now teens) with additional needs, aging parents, other health issues and life events, work, family life etc etc have all got in the way of being able to prioritise managing my MS. Besides that the impact of my MS on cognitive function means I struggle to get my head round the info provided by you and others. I'm fortunate that so far I seem to be doing ok on Ocrevus which I've been on for nearly 5 years.
How long is enough?
I think the main issue here is the difference in perspective.
It's not about the number of minutes. As a professional, I think 35 min is a really good effort - given time restrictions, other patients, other tasks, etc.
But as a patient, the fact that there is a timeframe can feel very restrictive.
MS affects your life in so many ways. And it change so much. What you told your neuro the previous time, may not be true any more. Before I see my neuro, I always make a list of things I want to discuss. But given the limited amount of time, I end up deleting most of the items (not urgent enough/ possibly something the neuro cannot help me with, so why waste time on that/hasn't happened for a few months, so let's just hope it's ok/etc.). I also read a lot about new therapies, supplements, diet, life style,... and I like to see what my neuro thinks before trying it (or after I've started them).
My neuro really takes her time for me (flipside: she always has a backlog), but we only discuss a few things at a time, and most things, I have to find out on my own, or from other patients.
And sometimes she only has 15min, or a bad day. That happens.
And sometimes I don't feel like talking much, and then I feel like I've wasted an appointment. That happens too.
You are lucky to see your Neuro so often. Once a year for me if I’m lucky. I know others who haven’t seen a Neuro in over 4 years
As MS is so complex and individual and NHS resources so limited, would it make sense for other people in the team (MS nurses or junior neurologists) to screen patients several months before their yearly appointments - like a triage-type thing? It seems to me that things just need much better communication, coordination and cohesion. I haven't seen the neurologist for two years and it will be nearly 3 years by the time my appointment comes, as i'm mostly well and NEDA according to my MRI's, however there is so much scope for people to fall through the net. 1)MRI's must be coordinated so that reports are in good time to discuss in the yearly appointment - these are often not in sync and then you don't receive any confirmation on your MRI results and this causes so much anxiety. If something needs discussing then it has to be possible to have the MRI before the appointment otherwise you could be waiting 11 months plus to find out/discuss!!! 2)Patients reminded to do their online EDSS before the meeting 3)MS nurse/neurology team to call patients to discuss previous 12 months, encourage patients to keep a diary of issues, point patients to other services and self help before the appointment and in good time to discuss whether it has been resolved or needs escalation 4)Availability of the neurology team to assess and refer to specialist services as needed, rather than storing up for one meeting a year? 5) phone call can support those with cognitive challenges to prepare for the appointment and help them to articulate/make notes for the neurologist which they may otherwise forget or struggle to communicate 6) at a triage phone call, the team could assess how long the appointment will need to be, 10 minutes or 1 hour, so that the right patients are seen for longer. It's very hard for MS patients to completely self-manage, as even with MS selfie which is fabulous, we can't know which symptoms are MS and which may not be and these appointments need to allow time for reassurance from a trusted expert.
perhaps the solution shouldn't be to add more burden to patients but to get patients and healthcare providers the resources they deserve. I'm sure this is something patients would gladly support. No one wants their wonderful euros to burn out either. I realize I'm talking about the NHS so probably a pipe dream but let's call out the real problem at least.
Or after the appointment the patients is referred immediately to supporting team for mop up questions and referrals and information etc. Which would require a mop up team in stand by.
I like this idea though
Like others, my GP doesn’t understand the mechanics of Ocrevus so anything that might be linked to that gets referred back to the MS team. However they have been good at managing my sleep & bowels via diet currently. I do ‘save up’ things to talk to my neurologist about in my annual review as it just seems easier to do it all in one go. The kind of questions I have aren’t answered via the CNS route so consultant it is. Is the solution to employ/train more neurologists do there is increased capacity? Does providing telehealth appointments allow increased appointment time so maybe offering these first before F2F or alternating the two? Just reading your reply to this pt shows me the value of a neurologist managing symptoms of MS over a GP because most of those in my experience would be almost fobbed off with “it’s your MS” 🤷♀️. Could each GP practise have a MS specialist or neurology specialist that has additional training in the way they have respiratory specialists? Sorry that’s rambling. Heat brain
Can I ask what the negative impacts of taking antihistamines are? I take certirizine for hay fever. Thanks
https://gavingiovannoni.substack.com/p/your-anticholinergic-burden
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1118461/
What about clemestine? Thats used in ms trials in the uk, but america found it accelerated ms progression and I myself with no walking issues felt like jelly when tried (being an OTC medication). Iv tried it twice and said never again that scared me.
Clemastine is a potent anticholinergic and is how it works to promote remyelination.
If you had ms would you take clemastine to see if it helps ?
No. Without phase 3 trial data we have no idea if it works or not. As a potential remyelinating agent is may only be needed for a short period of time, i.e. weeks to months, and not long-term.
That is interesting.
But could that also do manage to the brain? I didn’t read the two articles you attached but I am guessing they are highlighting the negative impact of antihistamines on brain health?
Thank you- am I right in thinking that fexofenadine, certirizine and loratadine have low or no anticholingeric affects?
Not correct. They all have anticholinergic effects including fexofenadine.
with respect:
"As a second-generation antihistamine, fexofenadine exhibits reduced affinity for cholinergic and α-adrenergic receptors, which results in minimal anticholinergic effects. This drug also demonstrates high specificity for H1 receptors and lacks anticholinergic activity."
https://www.ncbi.nlm.nih.gov/books/NBK556104/#:~:text=As%20a%20second%2Dgeneration%20antihistamine,receptors%20and%20lacks%20anticholinergic%20activity.
Also see https://pubmed.ncbi.nlm.nih.gov/15627436/
If you take too much of the 2nd gen antihistamines they can cause anticholinergic effects but as long as you stick to the doses they don't cross the blood-brain barrier as much as the 1st generation antihistamines did.
Yes, you are correct.
Which would be preferred for someone with ms who suffers with hay fever? I had read some of what Simon cited below
The second and third generation antihistamines that are designed not to cross the blood-brain-barrier. Unfortunately the G-protein coupled receptors, of which the muscarinic acetyl cholinergic receptors and histamine receptors are members, are quite similar to each other hence the cross-reactivity and overlaps of side effects.
Thank you for all your help. It’s really hard to try and do everything that’s best for your body/help prevent progression of MS. If I don’t take the certirizine I end up with watery itchy eyes and sometimes itchy skin (unrelated to the hay fever)
Your patient should thank his lucky stars he has you as his Neurologist! At my last consultation, my Neurologist hardly looked at me, while sat on the other side of a large room with a mask on. Although he didn't have much conversation, I could hardly hear what he was saying. It was a disaster, and I have asked to be referred to somewhere else. On the point regarding Burn Out MS, this was mentioned to me by a previous Neurologist about 10 years ago. She said she strongly believed that MS 'flat-lines' after a period. It gave me real hope. And there hasn't been too much of that!
Gavin, trying to bring your attention to a comment on the previous post re HSCT for PPMS. I posted the question that you kindly took the time to answer. I’m still awaiting the radiographers report on a recent MRI. If there is any active inflammation and/or new lesions since earlier MRI is there hope then?
I appreciate the true definition of PPMS would mean there is no activity, but I just want to be clear on how to proceed if there is something active/new on MRI, even if symptoms appear to be progressive.
The data on AHSCT in PPMS is just not there. Most trials have excluded PPMS. And many centre will not transplant patients with PPMS or SPMS because the results are inconsistent.
The NHS does not cover AHSCT for PPMS regardless of activity. However, many private centres will offer AHSCT for PPMS with active disease. However, if you have activity you would eligible for ocrelizumab under NHSE guidelines.
Why were you concerned about his hayfever related anti histamine use?
They can have central and peripheral anticholinergic effects which affect cognition and can make constipation worse.
Oh yes I get that sorry I thought you were inferring some fixed impact on progression?