Great post Prof G, I find MS Selfie a useful resource to understand living with my own MS.
I also get support from my MS service locally in NHS Forth Valley and from the MS Trust and MS Society and from Neurocentral.
I'm at a stage with my own MS and my growing understanding of what I'm dealing with that I'm relatively comfortable arranging my own appointments. I've had years of practice with my own MS now.
I think you’re correct in your assumption that ms selfie subscribers are more likely to agree to this as I absolutely do. I’d like to be consulted on how I want my care to be implemented and if I’m ever asked, my answer will be to ask for the chance to self assess in writing where I’d be happy for them to decide if I need an appointment or the other way round.
The ability to communicate desperately needs improving and dragging out of this archaic box ticking system consisting of; for example - randomised calls from my nurse but only during working hours, I’m full time and don’t know I need to be available. To call back means leaving an answerphone message, and so the game begins where we repeatedly miss each other.
Also, if patient’s have less appointments offered, it might mean experienced pwms can help push localised group meetings to include a more accessible time of day ie. outside of std working hours so everybody can attend if they need to, 11am on a Tuesday is no good for me. It could help alleviate loneliness for some but allow people to feel useful too as I’m unsure if the experienced pwms realise how invaluable they are to us newcomers.
How do I contact my MS team? They are the most elusive of human beings I have ever encountered. I email, I get a raft of out of office notifications, I phone, it goes through to voicemail, which then cuts the call because the voicemail box is full. My neurologist writes me a letter which takes six weeks to reach me (using modern day communication techniques like email would improve the situation, attach the letter and send it, two minutes at the most. The world has had email for 30 years now). I text, it take three days for anyone to get back to me. I haven't seen my neurologist, face to face, for over three years.
It would be useful if there was a basic standard of care across the country, that MSers could expect and that's not in place. Not everyone gets a regular MRI, not everyone gets put on a DMT, not everyone has a neurologist that keeps up to date with new information. I have never, in my normal check up with my MS team, been put through the MS Olympics (I know what they are because I've been on a clinical trial where I put through all the tests on a regular basis). No use asking my GP to take part, I have to contact them through their eConsult system and if I'm lucky enough to get to see someone in person, I never see the same person twice.
Yes, I know services are under-resourced, however all my MS nurses work part-time. Yes, I have mentioned this to the MS nurses, and once again I get the age old "excuse" of being busy. The whole world is busy, busy is good, it means we are getting back to some sort of normal, so when are these services going to pick up the pace. Are they busy doing their job or busy being busy? Yes, they have had staffing issues (haven't we all), not really my problem.
For the most part, I look after myself, because I have to. I do everything I am asked to do, I rarely contact my MS team, I rarely contact my doctor. Apart from having a rare, debilitating, incurable, invisible disease, I'm pretty healthy. I'm also lucky in that I don't have many symptoms and have what most would call a "normal" existence. However, on the rare occasion that I may need to speak to someone regarding a problem, I'm stuffed. Thank god for Dr Aaron Boster on YouTube and your blog.
The best thing I ever did with regards to my MS was say yes to going on a clinical trial (Radiance & Daybreak). Brilliant, I was closely monitored, put through the MS Olympics, everything checked and tested on a regular basis. It was also good for me because I could see if I was improving or declining based on the test results. I came off the clinical trial because the hospital closed the unit. I've just started another trial (Sizomus).
The best way to reduce NHS pressure as a result of MS would be to make GPs a key part of our team again and bring MS expertise back into GP surgeries.
As someone with several significant medical conditions (something that is going to get more common as DMTs mean an aging MS population) I find myself on a never ending merry go round (that is far from 'merry') of trying to get someone to diagnose and treat whatever new health concern I have.
Everyone wants to rule out MS first and the question "What does your neurologist say?" haunts my dreams because my neurologist says nothing, the only contact is half an hour on the phone every 18 months if I'm lucky.
So my care devolves to me going backwards and forwards carrying messages between my MS Nurse and my GP and trying to get someone to take responsibility for me. Neither has the skillset to determine what's happening and communication between them is time consuming for both and limited in scope. Meanwhile treatment for whatever it is is delayed by months or years.
Many years ago, my sister wMS used to see her GP first, and foremost who was very knowledgeable about MS, and who contacted the Neuro when necessary.
My situation s a clear example of the law of unintended consequences based on an assumption that patients who have MS only have MS. In my experience the MS Nurse system creates more appointments and worsens care because it builds in delays, unreal expectations and anxiety.
Oh and no one has ever done a peg test with me, not do I get an annual physical Neuro exam. Shouldn't Nurses at least be trained to do that? Might be more useful than the patronizing chat.
There is a big debate on what an annual neurological examination adds to the management of MS unless it is in the context of doing an EDSS, a relapse assessment or to assess worsening disability.
I mean in the context of relapse assessment and worsening disability. They are just not happening because we don't get to see our consultants even when we relapse. If the MS Nurse could do them as part of a relapse assessment it would be helpful. Then we might have proof that would get an MRI which would prove relapse which would enable access to more effective DMT
I have primary progressive MS. To be honest i dont see the point in my really even seeing the neurologist who are so over pressed right now with new patients. I am 71 years old. what is the point? I spoke to my MS nurse 2 weeks ago it works well. she rings me every 6 months. if i have an issue i tell her.
Maybe we should have a mentoring scheme within MSERS. The graduates who have had it years and still survving mentor the newer ones who are full of anxiety and think they will be in wheelchairs after only a few months after diagnsosis. I have actually kind of mentored a lady with MS we have been chatting for 3 years when i first met her she was ready to quit, now much more positive, keeps moving forward and is enjoying her life, and doesnt need the crutch of her neuro.(again he cant really do much for her anyway).
PIFU sounds like a hair dryer lol. Or is that PIFCO...same thing more hot air blowing around. But EDUCATION is the key to many things. Why do i need to drag my sorry backside to the hospital for an appointment with my lovely neurolgoist just to chat about our anniversary (16 years together), he cant do anything for me, we both know that. Yeh he can chuck new drugs at me, like recently HE let me try Sativex vile smelly and tasting stuff which just made me feel sick and dizzy. (No thanks).
Nah i would rather he spent his time working with new patients then myself. like i said he cant help me so why bother him. I am resigned now with my MS, scale is about 8 on the old chart but determined to keep moving forward. JUST ASK THE PATIENTS WHAT THEY WANT. Yeh its nice to know i can contact my MS nurse more of that i think would be the best way to go.
I think there is always something you can help a person with MS when you see them. Even pwMS who are 'well' and don't think they need to see an HCP, when you do a detailed and systematic assessment you always find an issue that needs addressing. It may even include something like advice regarding an advanced directive.
yes i agree but i dont have to go all the way to the hospital to do that. i have had face to face and to be honest the stress of finding someone to take me and get there and wait in a waiting room with my legs down is a nightmare, so for me i prefer to talk on phone. i have been with this for a long time, and i can now work out what is MS and what is something else. For example werid pain in rib/chest people saying it was MS hug i knew it wasnt and ended up in hospital with a heart attack. thankfully mild.
i think people who new to it etc thats important but i am 71 years old have had this since 1999 first symptoms, and only diangosed in 2016 february i just keep moving forward best i can. my neuro is great but i know he has so many other people to see. i just dont want to add to it.. i get to appoinment and what we talk about i could have done it over the phone.
yes i think thats a good idea. when i first saw my neuro privately i did a chart of a body indicating all the pain and numbness areas. he thought it was fab, and said straight away look see everything is all on the left side. as to what you had that can be down to extremem stress reaction, one thing can trigger another so in the end your body over reacts and realises too much adrenline (flight or fright). some people with MS i believe can also suffer with dysautomia.
from a professional web site: Multiple sclerosis (MS), affects both somatic and autonomic nervous system with a wide range of symptoms and signs. Less attention is paying to autonomic dysfunction, although they produce a serious impact on the patient management. Autonomic dysfunctions in MS patients are the result of multiple factors, such as demyelination of particular structures, imbalance due to the interaction of a dysregulated immune system and specific lymphocyte receptors, vitamin D deficiency and Epstein-Barr virus infection (1). Autonomic dysfunctions may be encountered in different stages of MS patients, diagnosis, and treatment being fundamental. This review aims to present the most common autonomic dysfunctions in patients with multiple sclerosis, providing a much wider view of this particular problem, and highlighting the importance of diagnosis and treatment.
so perhaps your not such a strange lady after all. xxxxxx I have the link saved. x
Hi Zenda! No, none of us are strange! No matter who says what! Thank you for your input. I’m an oldie also. It’s always something. And not aways MS at that! 🌷
Its amazing how one disease like M.S. can have many relatives which are all linked together. my brother has dysautomia. i do think too our family history can play a part too. My father had Lupus, my grandfather parkinsons, and both my grandfather and grandmother had R.A. all auto immune issues. I dont have regular MS. I have Primary Progressive MS which is totally different to RRMS. We all however, get treated the same by the neurolgoist but our needs are not the same.
I dont suffer RELAPSES per se, i have never had a break from the get go. From the day i walked into my neuro office too today i have left sided weakness, 3 bouts of optical neuritis (proven by VEP tests), and ongoing slow deterioration of my mobility. Pain is gettinig worse and worse. from the beginning i just had mild odd things, stinging bees, crawly spiders and dead patches on my back etc, but always with the left foot not working properly as it should. you could stick a pin in it and i wouldnt flinch do the same to the right and i would kick someone lol. Over time now i can barely get out of bed, and my walking is virtually just a small hop and rest. bit by bit. the neurogoloist knows there is nothing he can do for me. Yeh i see him at least every six months, but i would rather he concentrated on newbies who need him more then i do.
PIFU or not, i feel i am well cared for. I recently spoke to my MS nurse its again regular. my other main issue with my PPMS, is my bowel and bladder are which are really bad at the moment. I have however, found something which is helping me with both of them. with research i am now taking everyday A TABLESPOON OF GROUND FLAXSEED. boy i feel so much better, my bowel is kind of working a bit, and my bladder although still overactive, etc is actually kiind of working, i can pee a tad quicker lol. also my fatigue is slightly better.
ah the joys of MS. you have love and hate it lol. if i hadnt got MS i would probably have had a stroke as back then i was working 50 hours a week and rushing around like a looney tune, until I was hit with it, oh i also found out i had EPSTEIN BARR 2 years before onset.
PIFU or not, i am happy. I have great medical care. after my heart issue in march i feel that i am privilidged with the care i have. i dont really have any complaints. I had a wonderful husband in 2017 who looked after me, and we had 30 years of a great life, and he died suddenly so i treat everyday i have on this earth as being a privilidge as he never got to retire with me or have a life. I lost mum my 2016 suddenly 93 from italy. married my dad in the war. so have had heartache to deal with, i am still here soldiering on, and yes i am happy. GO FIGURE lol. xxxxxx
Dear Nellie, I was thinking, ohhh noo, the NHS sounds like it’s going the way of the states. We’ve been on our own, it feels like, for years now. And getting old with MS is a complete “get over it and live with it” now. I do like my neuro very much, however, there is no coordination between any physicians or specialists. Speaking of politics, I don’t know if anyone watched “Roadkill”. That was about the US getting its foot in the NHS door. It’s a goldmine here…🙁
hi it made me feel weird after a month i tried to keep it going. but to be honest it didnt do anything for the spasms in my legs at night. i find 2mg diazepam was just as affective. i was misled about sativax as i was told it was TCH free with all that stuff taken out. It isnt, has equal amounts of TCH AND CBD in it and you might as well just smoke weed lol which i have never done and neither will i ever do. Yes i deal with my own stuff myself. MS well it is what it is, we have and just need to get on with it. I find overall i know as much about it as my neuro does. he told me everytime he meets me, he learns something new lol. it took ages for diagnsosis as he told me i didnt run like a normal MS patient then obvoiusly did homework and realised there was such a beast as PPMS, never seen a case before. that was back in 2007. 16 years later i get official diagnosis. i could write a book on my experiences i did write a blog lol.
I just wish the neuros would get on the same page.
I think there is a big danger of implementing PIFUs. Right now in the UK, patients have a once a year neurology appointment which is on par or a bit less than other countries which range from once a year to once every 6 months. Usage of MS nurses is great, but it is also not a replacement for a neurologist. If the UK wants to save money, then they are hoping for people to see a neurologist less than once a year which is unconscionable. Once a year is a bare minimum for such a complex disease. Patients often ignore relapses, or are unable to tell the difference between a pseudo relapse and a real relapse. I'd imagine many patients will either request more follow-up or less follow-up. Those that need more follow-up for active disease and frequent relapses should of course be given that, but this doesn't seem to be the point of PIFUs. I'd imagine this policy will have implications based on socio-economic and educational factors rather than on health and disease severity factors. In short, MSers need at least once a year a check-in. If the PIFUs are hoping for less, then we will have lower quality of care. If they are allowing for once a year or more, then it isn't helping the NHS crisis, so I doubt that's the goal of this proposal. I think some centres offer Q&A sessions for MSers which may help and also could go virtual to help intermediate care between neurology visits.
Yes, I agree with you the PIFUs are not a solution for low investment and poor resources in MS services. However, they do offer some flexibility for some pwMS and so having the option of PIFUs will help. I think the real revolution will come with self-referral to specialist services, for example, neuropsychology, continence, physiotherapy, speech and language, etc.
This is a difficult one, and I'm not immediately convinced that PIFUs would result in a 'productive' use of clinicians' time. But I guess these things have to be considered. I reckon (without much info to back me up) that in about 10 years' time AI will have reached a level of sophistication where something like a robot GP could do a very good job, in concert with human doctors. But these kind of programs remain very primitive, and the UX today would make the ill just a little more sick.
Speaking personally, living inside a slow disease process, I feel very reassured that (sometimes) the same team checks in on me on an annual basis, as it is more than possible they will be able to identify changes I haven't clocked.
I would like to thank you. As a result of this website, which fostered confidence in us to ask for the highest efficacy DMT possible last week, we have now managed to get our child reassessed and she is now going to have her treatment scaled up. This would not have happened had we not read your work. We are in the ‘well-educated, knowledgeable, and empowered to self-manage their MS‘ category, what happens to those that are not? Keep going, ignore any critics.
As a retired NHS psychiatrist looking after people with chronic major mental illness where resources were very stretched I remember some colleagues being shocked at my tendency to suggest to my patients and their families that they phone for an appointment if there was a problem before their next appointment with me. I think my peers felt I was not "training" my patients properly. Unfortunately I did not formally assess the effectiveness of this approach but I felt that people tended not to misuse this offer and that in fact there was perhaps a paradoxical effect of the patients were less demanding because they knew they could see me if they need to. They were certainly more satisfied with the arrangement.
Thanks, very interesting. I manage my own care and right now can keep up and take myself to the necessary appointments. I do feel it will be a burden to to as my disability progresses.
Great post Prof G, I find MS Selfie a useful resource to understand living with my own MS.
I also get support from my MS service locally in NHS Forth Valley and from the MS Trust and MS Society and from Neurocentral.
I'm at a stage with my own MS and my growing understanding of what I'm dealing with that I'm relatively comfortable arranging my own appointments. I've had years of practice with my own MS now.
Keep up your good work Prof G it's appreciated.
Karen
I think you’re correct in your assumption that ms selfie subscribers are more likely to agree to this as I absolutely do. I’d like to be consulted on how I want my care to be implemented and if I’m ever asked, my answer will be to ask for the chance to self assess in writing where I’d be happy for them to decide if I need an appointment or the other way round.
The ability to communicate desperately needs improving and dragging out of this archaic box ticking system consisting of; for example - randomised calls from my nurse but only during working hours, I’m full time and don’t know I need to be available. To call back means leaving an answerphone message, and so the game begins where we repeatedly miss each other.
Also, if patient’s have less appointments offered, it might mean experienced pwms can help push localised group meetings to include a more accessible time of day ie. outside of std working hours so everybody can attend if they need to, 11am on a Tuesday is no good for me. It could help alleviate loneliness for some but allow people to feel useful too as I’m unsure if the experienced pwms realise how invaluable they are to us newcomers.
Just my thoughts though.
Brilliant Gavin,
This is why I love your opinions , You say things so clearly
Keep em coming!
Another thank you
John from JEMS
How do I contact my MS team? They are the most elusive of human beings I have ever encountered. I email, I get a raft of out of office notifications, I phone, it goes through to voicemail, which then cuts the call because the voicemail box is full. My neurologist writes me a letter which takes six weeks to reach me (using modern day communication techniques like email would improve the situation, attach the letter and send it, two minutes at the most. The world has had email for 30 years now). I text, it take three days for anyone to get back to me. I haven't seen my neurologist, face to face, for over three years.
It would be useful if there was a basic standard of care across the country, that MSers could expect and that's not in place. Not everyone gets a regular MRI, not everyone gets put on a DMT, not everyone has a neurologist that keeps up to date with new information. I have never, in my normal check up with my MS team, been put through the MS Olympics (I know what they are because I've been on a clinical trial where I put through all the tests on a regular basis). No use asking my GP to take part, I have to contact them through their eConsult system and if I'm lucky enough to get to see someone in person, I never see the same person twice.
This may also be a symptom of an under-resourced service rather than they don't care. They may be too busy to cope with the workload.
Yes, I know services are under-resourced, however all my MS nurses work part-time. Yes, I have mentioned this to the MS nurses, and once again I get the age old "excuse" of being busy. The whole world is busy, busy is good, it means we are getting back to some sort of normal, so when are these services going to pick up the pace. Are they busy doing their job or busy being busy? Yes, they have had staffing issues (haven't we all), not really my problem.
For the most part, I look after myself, because I have to. I do everything I am asked to do, I rarely contact my MS team, I rarely contact my doctor. Apart from having a rare, debilitating, incurable, invisible disease, I'm pretty healthy. I'm also lucky in that I don't have many symptoms and have what most would call a "normal" existence. However, on the rare occasion that I may need to speak to someone regarding a problem, I'm stuffed. Thank god for Dr Aaron Boster on YouTube and your blog.
The best thing I ever did with regards to my MS was say yes to going on a clinical trial (Radiance & Daybreak). Brilliant, I was closely monitored, put through the MS Olympics, everything checked and tested on a regular basis. It was also good for me because I could see if I was improving or declining based on the test results. I came off the clinical trial because the hospital closed the unit. I've just started another trial (Sizomus).
The best way to reduce NHS pressure as a result of MS would be to make GPs a key part of our team again and bring MS expertise back into GP surgeries.
As someone with several significant medical conditions (something that is going to get more common as DMTs mean an aging MS population) I find myself on a never ending merry go round (that is far from 'merry') of trying to get someone to diagnose and treat whatever new health concern I have.
Everyone wants to rule out MS first and the question "What does your neurologist say?" haunts my dreams because my neurologist says nothing, the only contact is half an hour on the phone every 18 months if I'm lucky.
So my care devolves to me going backwards and forwards carrying messages between my MS Nurse and my GP and trying to get someone to take responsibility for me. Neither has the skillset to determine what's happening and communication between them is time consuming for both and limited in scope. Meanwhile treatment for whatever it is is delayed by months or years.
Many years ago, my sister wMS used to see her GP first, and foremost who was very knowledgeable about MS, and who contacted the Neuro when necessary.
My situation s a clear example of the law of unintended consequences based on an assumption that patients who have MS only have MS. In my experience the MS Nurse system creates more appointments and worsens care because it builds in delays, unreal expectations and anxiety.
Oh and no one has ever done a peg test with me, not do I get an annual physical Neuro exam. Shouldn't Nurses at least be trained to do that? Might be more useful than the patronizing chat.
There is a big debate on what an annual neurological examination adds to the management of MS unless it is in the context of doing an EDSS, a relapse assessment or to assess worsening disability.
I mean in the context of relapse assessment and worsening disability. They are just not happening because we don't get to see our consultants even when we relapse. If the MS Nurse could do them as part of a relapse assessment it would be helpful. Then we might have proof that would get an MRI which would prove relapse which would enable access to more effective DMT
I have primary progressive MS. To be honest i dont see the point in my really even seeing the neurologist who are so over pressed right now with new patients. I am 71 years old. what is the point? I spoke to my MS nurse 2 weeks ago it works well. she rings me every 6 months. if i have an issue i tell her.
Maybe we should have a mentoring scheme within MSERS. The graduates who have had it years and still survving mentor the newer ones who are full of anxiety and think they will be in wheelchairs after only a few months after diagnsosis. I have actually kind of mentored a lady with MS we have been chatting for 3 years when i first met her she was ready to quit, now much more positive, keeps moving forward and is enjoying her life, and doesnt need the crutch of her neuro.(again he cant really do much for her anyway).
PIFU sounds like a hair dryer lol. Or is that PIFCO...same thing more hot air blowing around. But EDUCATION is the key to many things. Why do i need to drag my sorry backside to the hospital for an appointment with my lovely neurolgoist just to chat about our anniversary (16 years together), he cant do anything for me, we both know that. Yeh he can chuck new drugs at me, like recently HE let me try Sativex vile smelly and tasting stuff which just made me feel sick and dizzy. (No thanks).
Nah i would rather he spent his time working with new patients then myself. like i said he cant help me so why bother him. I am resigned now with my MS, scale is about 8 on the old chart but determined to keep moving forward. JUST ASK THE PATIENTS WHAT THEY WANT. Yeh its nice to know i can contact my MS nurse more of that i think would be the best way to go.
I think there is always something you can help a person with MS when you see them. Even pwMS who are 'well' and don't think they need to see an HCP, when you do a detailed and systematic assessment you always find an issue that needs addressing. It may even include something like advice regarding an advanced directive.
yes i agree but i dont have to go all the way to the hospital to do that. i have had face to face and to be honest the stress of finding someone to take me and get there and wait in a waiting room with my legs down is a nightmare, so for me i prefer to talk on phone. i have been with this for a long time, and i can now work out what is MS and what is something else. For example werid pain in rib/chest people saying it was MS hug i knew it wasnt and ended up in hospital with a heart attack. thankfully mild.
i think people who new to it etc thats important but i am 71 years old have had this since 1999 first symptoms, and only diangosed in 2016 february i just keep moving forward best i can. my neuro is great but i know he has so many other people to see. i just dont want to add to it.. i get to appoinment and what we talk about i could have done it over the phone.
yes i think thats a good idea. when i first saw my neuro privately i did a chart of a body indicating all the pain and numbness areas. he thought it was fab, and said straight away look see everything is all on the left side. as to what you had that can be down to extremem stress reaction, one thing can trigger another so in the end your body over reacts and realises too much adrenline (flight or fright). some people with MS i believe can also suffer with dysautomia.
from a professional web site: Multiple sclerosis (MS), affects both somatic and autonomic nervous system with a wide range of symptoms and signs. Less attention is paying to autonomic dysfunction, although they produce a serious impact on the patient management. Autonomic dysfunctions in MS patients are the result of multiple factors, such as demyelination of particular structures, imbalance due to the interaction of a dysregulated immune system and specific lymphocyte receptors, vitamin D deficiency and Epstein-Barr virus infection (1). Autonomic dysfunctions may be encountered in different stages of MS patients, diagnosis, and treatment being fundamental. This review aims to present the most common autonomic dysfunctions in patients with multiple sclerosis, providing a much wider view of this particular problem, and highlighting the importance of diagnosis and treatment.
so perhaps your not such a strange lady after all. xxxxxx I have the link saved. x
Hi Zenda! No, none of us are strange! No matter who says what! Thank you for your input. I’m an oldie also. It’s always something. And not aways MS at that! 🌷
https://www.spandidos-publications.com/10.3892/etm.2020.9326#:~:text=Autonomic%20dysfunctions%20in%20MS%20patients,Barr%20virus%20infection%20(1).
Its amazing how one disease like M.S. can have many relatives which are all linked together. my brother has dysautomia. i do think too our family history can play a part too. My father had Lupus, my grandfather parkinsons, and both my grandfather and grandmother had R.A. all auto immune issues. I dont have regular MS. I have Primary Progressive MS which is totally different to RRMS. We all however, get treated the same by the neurolgoist but our needs are not the same.
I dont suffer RELAPSES per se, i have never had a break from the get go. From the day i walked into my neuro office too today i have left sided weakness, 3 bouts of optical neuritis (proven by VEP tests), and ongoing slow deterioration of my mobility. Pain is gettinig worse and worse. from the beginning i just had mild odd things, stinging bees, crawly spiders and dead patches on my back etc, but always with the left foot not working properly as it should. you could stick a pin in it and i wouldnt flinch do the same to the right and i would kick someone lol. Over time now i can barely get out of bed, and my walking is virtually just a small hop and rest. bit by bit. the neurogoloist knows there is nothing he can do for me. Yeh i see him at least every six months, but i would rather he concentrated on newbies who need him more then i do.
PIFU or not, i feel i am well cared for. I recently spoke to my MS nurse its again regular. my other main issue with my PPMS, is my bowel and bladder are which are really bad at the moment. I have however, found something which is helping me with both of them. with research i am now taking everyday A TABLESPOON OF GROUND FLAXSEED. boy i feel so much better, my bowel is kind of working a bit, and my bladder although still overactive, etc is actually kiind of working, i can pee a tad quicker lol. also my fatigue is slightly better.
ah the joys of MS. you have love and hate it lol. if i hadnt got MS i would probably have had a stroke as back then i was working 50 hours a week and rushing around like a looney tune, until I was hit with it, oh i also found out i had EPSTEIN BARR 2 years before onset.
PIFU or not, i am happy. I have great medical care. after my heart issue in march i feel that i am privilidged with the care i have. i dont really have any complaints. I had a wonderful husband in 2017 who looked after me, and we had 30 years of a great life, and he died suddenly so i treat everyday i have on this earth as being a privilidge as he never got to retire with me or have a life. I lost mum my 2016 suddenly 93 from italy. married my dad in the war. so have had heartache to deal with, i am still here soldiering on, and yes i am happy. GO FIGURE lol. xxxxxx
Dear Nellie, I was thinking, ohhh noo, the NHS sounds like it’s going the way of the states. We’ve been on our own, it feels like, for years now. And getting old with MS is a complete “get over it and live with it” now. I do like my neuro very much, however, there is no coordination between any physicians or specialists. Speaking of politics, I don’t know if anyone watched “Roadkill”. That was about the US getting its foot in the NHS door. It’s a goldmine here…🙁
Take care!💕
hi it made me feel weird after a month i tried to keep it going. but to be honest it didnt do anything for the spasms in my legs at night. i find 2mg diazepam was just as affective. i was misled about sativax as i was told it was TCH free with all that stuff taken out. It isnt, has equal amounts of TCH AND CBD in it and you might as well just smoke weed lol which i have never done and neither will i ever do. Yes i deal with my own stuff myself. MS well it is what it is, we have and just need to get on with it. I find overall i know as much about it as my neuro does. he told me everytime he meets me, he learns something new lol. it took ages for diagnsosis as he told me i didnt run like a normal MS patient then obvoiusly did homework and realised there was such a beast as PPMS, never seen a case before. that was back in 2007. 16 years later i get official diagnosis. i could write a book on my experiences i did write a blog lol.
I just wish the neuros would get on the same page.
Hi Prof G,
I think there is a big danger of implementing PIFUs. Right now in the UK, patients have a once a year neurology appointment which is on par or a bit less than other countries which range from once a year to once every 6 months. Usage of MS nurses is great, but it is also not a replacement for a neurologist. If the UK wants to save money, then they are hoping for people to see a neurologist less than once a year which is unconscionable. Once a year is a bare minimum for such a complex disease. Patients often ignore relapses, or are unable to tell the difference between a pseudo relapse and a real relapse. I'd imagine many patients will either request more follow-up or less follow-up. Those that need more follow-up for active disease and frequent relapses should of course be given that, but this doesn't seem to be the point of PIFUs. I'd imagine this policy will have implications based on socio-economic and educational factors rather than on health and disease severity factors. In short, MSers need at least once a year a check-in. If the PIFUs are hoping for less, then we will have lower quality of care. If they are allowing for once a year or more, then it isn't helping the NHS crisis, so I doubt that's the goal of this proposal. I think some centres offer Q&A sessions for MSers which may help and also could go virtual to help intermediate care between neurology visits.
Yes, I agree with you the PIFUs are not a solution for low investment and poor resources in MS services. However, they do offer some flexibility for some pwMS and so having the option of PIFUs will help. I think the real revolution will come with self-referral to specialist services, for example, neuropsychology, continence, physiotherapy, speech and language, etc.
This is a difficult one, and I'm not immediately convinced that PIFUs would result in a 'productive' use of clinicians' time. But I guess these things have to be considered. I reckon (without much info to back me up) that in about 10 years' time AI will have reached a level of sophistication where something like a robot GP could do a very good job, in concert with human doctors. But these kind of programs remain very primitive, and the UX today would make the ill just a little more sick.
Speaking personally, living inside a slow disease process, I feel very reassured that (sometimes) the same team checks in on me on an annual basis, as it is more than possible they will be able to identify changes I haven't clocked.
I would like to thank you. As a result of this website, which fostered confidence in us to ask for the highest efficacy DMT possible last week, we have now managed to get our child reassessed and she is now going to have her treatment scaled up. This would not have happened had we not read your work. We are in the ‘well-educated, knowledgeable, and empowered to self-manage their MS‘ category, what happens to those that are not? Keep going, ignore any critics.
Is this kind of language REALLY necessary - I don't give a F... - but many people will and would find this quite insulting.
I was looking for the reactions. I think it's great! :-) Apparently very appropriate from what I am reading. (I'm in the US).
I’m with you, Tom.
Thanks Prof G. I laughed for a good long while at the title, but then that’s just me! (And I needed it.)
One imagines the Hyacinth Buckets amongst us will be too preoccupied to care about the F word at this point.
I have edited the title. Apologies.
Please, please find a way to create MS-Connect. It's an idea that has found it's time.
I don't have the necessary bandwidth for this. I am trying to focus my attention on EBV.
It potentially could make a fabulous student(s) project. Grant funding?
There's always so much to do and I'm very grateful for all that you do. Thank you
As a retired NHS psychiatrist looking after people with chronic major mental illness where resources were very stretched I remember some colleagues being shocked at my tendency to suggest to my patients and their families that they phone for an appointment if there was a problem before their next appointment with me. I think my peers felt I was not "training" my patients properly. Unfortunately I did not formally assess the effectiveness of this approach but I felt that people tended not to misuse this offer and that in fact there was perhaps a paradoxical effect of the patients were less demanding because they knew they could see me if they need to. They were certainly more satisfied with the arrangement.
Thanks, very interesting. I manage my own care and right now can keep up and take myself to the necessary appointments. I do feel it will be a burden to to as my disability progresses.