Sorry me again! Just wanted to elaborate on the cognitive bit;
I feel that MS cognitive issues are often referred only as 'cognitive fog', which is assumed a relatively mild deficit or as a mild impairment across one's normal abilities, much like having a hangover or a poor nights sleep. But cognitive problems in MS are much more specific and can be devastating and very frightening. It really is not often described how different MS cognitive problems manifest and affects people, nor what pwMS can do about it if anything.
I think 'cognitive fog', as I think I'm interpreting, is something that can sometimes be assisted through holistic approaches such as HRT, B12, sleep and exercise. But what about other cognitive problems caused by MS (sorry I don't know the medical terms for these things...) but stuff like loss or difficulty with speech, word recall, reading problems and language recognition issues, severe short-term memory loss, sequencing problems....stuff that patients with stroke may also experience. I might be wrong, but it appears to me that there is a lot of relevant information, support, assessments and therapies which are offered to stroke patients to manage their cognitive difficulties, which MS patients simply don't have. Why is that?
Yes loved this newsletter! However it doesn’t really cover the other specific cognitive issues that MS can create, which many of us experience without any insights. It’s a bit like using an umbrella term like ‘mobility issues’ rather than discussing all the specific symptoms that fit under the umbrella such as foot drop, paralysis, spasticity etc? So maybe under the umbrella of ‘cognitive issues’ there might be cognitive fog, but also specifically memory difficulties - things like all the executive function difficulties, spoken and written language difficulties, visual spacial problems, emotional lability, there must be many more I don’t have names for - such as a feeling that I was experiencing an entirely different speed to the world around me and my visual- spacial field felt warped - these are things that lasted for months and were debilitating….I shudder to think of these reoccurring or becoming more permanent
Karen, you put that extremely well. The cognitive issues are frightening. The aphasic episodes- word retrieval, knowing how you’re able to write or dictate, and it just doesn’t work is my greatest worry. Like UTIs, I don’t find anyone takes this very seriously, particularly when one reaches a certain age here…cheers!🌷
Amen! I was Dx’d due to severe cog problems-I thought it was dementia. The highly effective DMTs plus Alzheimer Meds (!) have made a huge difference. Along w/good sleep, exercise & avoiding processed foods. But my processing speed is slower & my memory is not good. Technology is my friend there-it IS a struggle and 0 support from MS Specialist & general nero beyond the alzheimer drugs. Sad
I would like to add one to the three core symptoms that tend to be poorly managed- UTIs. I have had 7 months of back to back UTIs and 15 lots of antibiotics - I'm currently failing miserably to manage the interface between my GP practice, my urologist, neurologist, 2 different microbiology departments in 3 different areas - and they all seem incapable of talking to one another. I'm a bioscientist - god knows how Joe Blogs manages!
I anticipate the sleep and fatigue flowcharts will have a branch to leads to infections including UTIs. But I agree self-management of bladder problems is a big must.
- I have always felt that people diagnosed with MS (and their carers/family) should have like an introductory education film on what MS really is and then provided with the information on MS selfie to drill down on areas of focus that might be relevant. Often pwMS are expected to educate themselves the minute they are diagnosed , they have tons of questions, a lot of wildly variable symptoms, choices they are expected to make on medication and it’s overwhelming. It’s also assumed that resources already out there can provide that education for MS patients - but they are often severely lacking and simply provide a stereotypical broad stroke without any of the practical detail of coping and managing with symptoms - which thankfully your MS Selfie really does extremely well. Thank you!
- it’s hard to articulate many of the weird symptoms of MS and these need to be described and detailed in one place (like MS Selfie) in order for pwMS to identify and recognise what these symptoms actually are and attribute them to MS in the first place. Without this, it’s incredibly easy to feel like your symptoms are imagined or a product of MH. It’s essential that pwMS have enough understanding of what can occur with MS in order to have the vocabulary and validation for seeking help - even self-help.
- yes agreed that cognitive fog is tied to sleep and fatigue. However cognitive problems can hit first and yet from most sources of information MS is still talked about as a mobility and physically disabling condition, even in yearly reviews. It’s assumed that dementia symptoms are more advanced MS rather than at onset and I personally found it therefore very hard to express how difficult I found my initial symptoms, as family and friends just didn’t recognise or anticipate my problems as MS!
- “my beautiful broken brain” was an amazing film I watched about a young woman who experienced a stroke. https://m.imdb.com/title/tt3815136/
It was the only thing I’ve found since having MS that resonated and described my cognitive problems. It was so powerful to have found it and I recommend watching!
Sleep would be a great starting point. I know that without effective treatment for nerve pain, my sleep is greatly diminished. Even when I am just uncomfortable and can ignore it in the day, it effects my sleep quality. That and a relaxation app to help with brain whirr. Night is when I am still and quiet enough to think.
As PJ said, UTI info would help too. Just had delivery of Cranberry extract to give that a try. Waiting for antibiotics as I write. Was in hospital with sepsis last year so I now know how important it is.
I got a stand-by antibiotic prescription from urology due to suffering repeat UTIs on Natalizumab. It seems to annoy the GP’s office but I manage to get it filled.
Foreigner, good for you. I just had a kidney infection that didn’t seem to start in my bladder. That was the fourth UTI this year. I do not find these are taken seriously enough.🌷
Good sleep is critical to functioning & maintaining a sensible weight. I suspect my sleep (insomnia) issues are more to do with peri menopause (lovely can of worms) than MS, (although the MS affected bowel and bladder play their part too). Looking forward to anything you can do to help here.
Cognition - I am still struggling to learn to pace my brain, and when I get it wrong, it basically shuts now all cognitive functions and I just need to lie down & rest with my eyes closed. This does not usually mean sleep, it’s just my brain needing to stop being stimulated.
Would love not to have to pace my brain, or have tools & tips for identifying when I need to.
Chris, is it possible to get a referral to a good NHS gyno for HRT advice etc, I requested one and made it clear how important it was for MS management and found it extremely helpful. I had several gyno appts for HRT and some physio appts for pelvic floor.
Things like 'Vagifem' (small dose of oestrogen in a pessary) can really help if you feel urgency to pee at night but don't have a full bladder, for example, as having less moisture due to less oestrogen can make those nerves more sensitive. Getting HRT can help with sleep and cognition, but I was also recommended B6 with Magnesium glycinate, Maca and Taurine to relieve anxiety, energy and sleep. Peri-menopause also affects the bowel and HRT can help with this too. I really recommend pushing for those appointments alongside your MS management xx
I’d like more help with pain management- how many of us have heard “MS doesn’t cause pain” ... well mine does, so I wish it was better understood so I don’t risk being labelled a drug-seeker in my attempts to get help.
Foreigner- absolutely painful. My neurologist told me not to stop pain medication at night. I don’t understand why pain isn’t relieved, I’m in the states and I have my theories.. I hope you get some help. 🌷
I’m glad it’s working out for you. Excellent! I have appointment with neuro in a few days. I am in dire of need coordination of care, particularly for vertigo and eye issues, which seem to be lasting far too long, and R back pain with this kidney adventure. The difficulty with a bit of pain control is perplexing. I understand. Be well!🌷
If there were treatments (treatments to address smouldering MS + the underlying EBV infection) which stopped the unrelenting worsening (not just stopping relapses), then most MS issues would improve eg better sleep, more incentive to exercise, better chance of staying in employment (good for cognitive function / self esteem etc). Much more difficult to “self-manage” when faced with a future of ever increasing disability. My friend in her late 50s operates her electric wheelchair with the one finger which still works. Her husband is drained from 30 years of MS. Self management shouldn’t be the way for them. They need proactive support from the health care system. I can understand the concept of self management with T2D, but advanced MS is a totally different ball game. Patients don’t need fancy graphics or route maps. They need one phone number (or an Amazon type page) so they can request anti-biotics for a UTI, a physio appointment or visit, CBT, appointment with a continence adviser….
It is horses for courses; self-management is not for everyone, but it does allow pwMS to tackle some of their own problems. The issue with MS treatments and using them early and effectively is the slow adoption of innovations. That battle is ongoing and the science as well.
Hello, the path of care has been very difficult and now I’m living in a care home with people with dementia etc. The transition has been heartbreaking but necessary.
I am sorry to hear this. In the current era of early MS diagnosis and early MS treatment, particularly with highly effective DMTs, we hope the need for care homes will be rare.
For me, I think better than flowcharts would just be education "campaigns" for pwMS that insomnia/fatigue/cognition are worth trying to treat. If you're trying to do your own research on say, fatigue, what you tend to learn is "80% of pwMS have it, we don't know what causes it, the medications are very hit or miss" whereas the reality is that there are a lot of NPIs that can help, and there are other causes to rule out! I spent a year going "well it sucks that I have fatigue forever now" and it turned out it was a B12 deficiency that could have been addressed much earlier if I had proactively sought to "treat" my fatigue. I get a newsletter from the Accelerated Cure Project (https://www.acceleratedcure.org/pastnewsletters) that has a great (not being facetious) format of "this is a bad thing that can happen to you with MS" followed by "it has been quite successfully treated with X/Y/Z for most people".
YES! So frustrating as a lot of MS information sites out there focus on stats and generalised views, there's a lot of gloss and not tangible help. I find most information sites are more geared towards the general public getting a quick overview of what MS is in order to support the 'charity'. Using stats creates an incomplete picture of MS to those that don't have it, and that stereotyped idea of what MS is then invalidates pwMS real lived experiences, it makes it extremely difficult to advocate for oneself with friends, family and even GPs!
Gavin I think the idea of a self management flowchart is a really good idea. However, I wonder whether the cognitive issues might be addressed as a priority? It seems there is no advice offered in this subject and I tell people that I am 50% of the wife I want to be. It is because I can no longer multi-task, a one word interruption to a task renders me having to start from the beginning, an inability to recall movies/books/conversations leaves me like appearing ignorant and dumb. But there is no MS assessment around the severity and because my ‘old’ (natural/pre cognitive decline) levels were rather high achieving ... or so I am told ... apparently nobody would notice my difficulties and nothing is being offered.
Yet as I read the comments from others it seems there are treatments out there.
The impact on life of cognitive challenges is so wide ranging - from relationships to employment possibilities to self esteem issues. I really hope it might be possible for cognitive issues and treatments to become priorities within your flowchart work.
Thankyou for your ongoing writing, research and help with our MS lives.
Absolutely Bron 🙏 nothing MS has to offer is a preference, but my biggest fear with MS is dementia and cognitive losses in language, memory and processing. There seem to be drugs and medications for other symptoms and maybe this is the reason that some serious symptoms are overlooked? I really hope this isn’t the case as there must be insights that explain the distinct cognitive issues we experience and an understanding of therapies that might help us regain or retrain or compensate for what we have lost.
As a marketer I agree you should focus one one thing for patients but I disagree with sleep. Awith the point that it’s important but to a patient already overwhelmed with a diagnosis telling them to improve sleep when they probably are already trying is demoralizing and will create a feeling of futility vs empowerment.
In talking to patients the number one keeping me up at night is dmd choice. All the sleep in the world doesn’t matter if you have highly active ms but are treating it with glatimer because “it’s safe”.
I want to stop hearing things like
“I prefer a pill” (in WHAT other category is it acceptable to prioritize form over efficacy when there is a meaningful difference “
“I don’t know how to choose between 10 options “ (no one needs that many options- amongst the highest efficacy there are less)
Or
“I don’t want side effects “ (ok does anyone talk about the long term side effect of NOT treating? Like you know blindness incontinence cognitive changes, anything impacted by undertreated ms)?
I think the idea of self management options like sleep and exercise (could argue exercise should be first) should be reserved only for those already on a high efficacy treatment but first we have much communications work to do so patient peer advisors no longer hear these most frequent comments at diagnosis.
Once a patient is on am effective treatment they willl also naturally educate them on other optimizations it’s a snowball effect.
First everyone has to feel urgency and take it more seriously.
Sleep was, and still is to some extent, a major issue for me over the past year. I found some excellent information from the podcast The Huberman Lab with Dr. Andrew Huberman. He has a few episodes dedicated specifically to optimizing sleep. The episode from August 8, 2022 was most helpful for me.
Thank you for addressing this. I find your work and information so helpful.
Can only agree with the self management approach. I’ve long had the view that you need to be your own doctor. It really is a team effort though, working with your GP to Neurologist etc when they hold the keys to vital medications. However time is where you have the big advantage. Reading, learning etc. For me the Mind, Exercise, Diet, Sleep or MEDS approach has been particularly beneficial overall but it did take me a long time to get there. The use of Cladribine was certainly the game changer for me though. Just a pity it took so long to get it.
Yes, and I have researched the area myself. However at my last consultant appt I was told "I'd have to just put up with it"! Where are these specialist neuro-urology units you refer to in your newsletter? Do they exist in the UK?
Yes, the specialist units exist (we refer to the one at UCLH, which is based at the National Hospital for Neurology and Neurosurgery, Queen Square). However, neurogenic bladder problems are so common most general urology units are able to provide a decent service. Have you seen a urologist?
I was “on the list” for urology for over 2 years and got no-where. During covid symptoms that could have related to bladder cancer got me on a 2 week track (thankfully all clear), the urologist asked lots of wider questions about my bladder at the scan and within a month I had been assessed & was on mirabegron (pushed to avoid the anticholinergenics) for overactive bladder. It has been life changing! (If I’d known that would be the case, I’d have pushed harder to find out what was happening with my referral- which I suspect hadn’t been properly made). It’s too easy to muddle along and try & cope as little by little things get harder, without realising there are solutions.
Yes, have tried nurse administered cystistat, discontinued as resulted in UTIs, now on Hiprex. A catalogue of unsatisfactory consultations - perhaps not for a public forum.......
Chris I have a similar Mirabegron success story via UCLH. My local continence service tried all the conventional stuff, and the pelvic floor stimulation machines, try self catheterisation, try Tolterodine, cut out caffeine. I knew it wasn’t due to my pelvic muscles and was at my whits end. I eventually agreed to try Mirabegron and stopped needing to wear continence pads.
And after spending YEARS being told to try all the different ineffective treatments.
Why did it take a self referral to UCLH to get this?
Sorry me again! Just wanted to elaborate on the cognitive bit;
I feel that MS cognitive issues are often referred only as 'cognitive fog', which is assumed a relatively mild deficit or as a mild impairment across one's normal abilities, much like having a hangover or a poor nights sleep. But cognitive problems in MS are much more specific and can be devastating and very frightening. It really is not often described how different MS cognitive problems manifest and affects people, nor what pwMS can do about it if anything.
I think 'cognitive fog', as I think I'm interpreting, is something that can sometimes be assisted through holistic approaches such as HRT, B12, sleep and exercise. But what about other cognitive problems caused by MS (sorry I don't know the medical terms for these things...) but stuff like loss or difficulty with speech, word recall, reading problems and language recognition issues, severe short-term memory loss, sequencing problems....stuff that patients with stroke may also experience. I might be wrong, but it appears to me that there is a lot of relevant information, support, assessments and therapies which are offered to stroke patients to manage their cognitive difficulties, which MS patients simply don't have. Why is that?
A previous newsletter on cog-fog may answer your question.
https://gavingiovannoni.substack.com/p/cog-fog-and-fatigue#details
Yes loved this newsletter! However it doesn’t really cover the other specific cognitive issues that MS can create, which many of us experience without any insights. It’s a bit like using an umbrella term like ‘mobility issues’ rather than discussing all the specific symptoms that fit under the umbrella such as foot drop, paralysis, spasticity etc? So maybe under the umbrella of ‘cognitive issues’ there might be cognitive fog, but also specifically memory difficulties - things like all the executive function difficulties, spoken and written language difficulties, visual spacial problems, emotional lability, there must be many more I don’t have names for - such as a feeling that I was experiencing an entirely different speed to the world around me and my visual- spacial field felt warped - these are things that lasted for months and were debilitating….I shudder to think of these reoccurring or becoming more permanent
Karen, you put that extremely well. The cognitive issues are frightening. The aphasic episodes- word retrieval, knowing how you’re able to write or dictate, and it just doesn’t work is my greatest worry. Like UTIs, I don’t find anyone takes this very seriously, particularly when one reaches a certain age here…cheers!🌷
Yes, barely discussed and certainly not explained or therapy offered. I wonder why?
Amen! I was Dx’d due to severe cog problems-I thought it was dementia. The highly effective DMTs plus Alzheimer Meds (!) have made a huge difference. Along w/good sleep, exercise & avoiding processed foods. But my processing speed is slower & my memory is not good. Technology is my friend there-it IS a struggle and 0 support from MS Specialist & general nero beyond the alzheimer drugs. Sad
I would like to add one to the three core symptoms that tend to be poorly managed- UTIs. I have had 7 months of back to back UTIs and 15 lots of antibiotics - I'm currently failing miserably to manage the interface between my GP practice, my urologist, neurologist, 2 different microbiology departments in 3 different areas - and they all seem incapable of talking to one another. I'm a bioscientist - god knows how Joe Blogs manages!
I assume you have read these two newsletters?
https://gavingiovannoni.substack.com/p/infection
https://gavingiovannoni.substack.com/p/how-to-interpret-a-urine-dipstick#details
I anticipate the sleep and fatigue flowcharts will have a branch to leads to infections including UTIs. But I agree self-management of bladder problems is a big must.
Thank you prof G!
- I have always felt that people diagnosed with MS (and their carers/family) should have like an introductory education film on what MS really is and then provided with the information on MS selfie to drill down on areas of focus that might be relevant. Often pwMS are expected to educate themselves the minute they are diagnosed , they have tons of questions, a lot of wildly variable symptoms, choices they are expected to make on medication and it’s overwhelming. It’s also assumed that resources already out there can provide that education for MS patients - but they are often severely lacking and simply provide a stereotypical broad stroke without any of the practical detail of coping and managing with symptoms - which thankfully your MS Selfie really does extremely well. Thank you!
- it’s hard to articulate many of the weird symptoms of MS and these need to be described and detailed in one place (like MS Selfie) in order for pwMS to identify and recognise what these symptoms actually are and attribute them to MS in the first place. Without this, it’s incredibly easy to feel like your symptoms are imagined or a product of MH. It’s essential that pwMS have enough understanding of what can occur with MS in order to have the vocabulary and validation for seeking help - even self-help.
- yes agreed that cognitive fog is tied to sleep and fatigue. However cognitive problems can hit first and yet from most sources of information MS is still talked about as a mobility and physically disabling condition, even in yearly reviews. It’s assumed that dementia symptoms are more advanced MS rather than at onset and I personally found it therefore very hard to express how difficult I found my initial symptoms, as family and friends just didn’t recognise or anticipate my problems as MS!
- “my beautiful broken brain” was an amazing film I watched about a young woman who experienced a stroke. https://m.imdb.com/title/tt3815136/
It was the only thing I’ve found since having MS that resonated and described my cognitive problems. It was so powerful to have found it and I recommend watching!
Hi Karen
Thanks for the movie recommendation. I’m actually watching it now! Here is a clip from a movie on my list. It is regarding MS.
https://www.imdb.com/video/imdb/vi2236661785?ref_=ext_shr_lnk
Take care🌝
Thanks for this.🌷
Sleep would be a great starting point. I know that without effective treatment for nerve pain, my sleep is greatly diminished. Even when I am just uncomfortable and can ignore it in the day, it effects my sleep quality. That and a relaxation app to help with brain whirr. Night is when I am still and quiet enough to think.
As PJ said, UTI info would help too. Just had delivery of Cranberry extract to give that a try. Waiting for antibiotics as I write. Was in hospital with sepsis last year so I now know how important it is.
I got a stand-by antibiotic prescription from urology due to suffering repeat UTIs on Natalizumab. It seems to annoy the GP’s office but I manage to get it filled.
Foreigner, good for you. I just had a kidney infection that didn’t seem to start in my bladder. That was the fourth UTI this year. I do not find these are taken seriously enough.🌷
That’s really scary. I hope they are taking you seriously now.
I 💗the holiday photo. You really must switch off more and take some lighter reading on holiday.
Self care first for all of us . Great News letter all the same. 😁
Good sleep is critical to functioning & maintaining a sensible weight. I suspect my sleep (insomnia) issues are more to do with peri menopause (lovely can of worms) than MS, (although the MS affected bowel and bladder play their part too). Looking forward to anything you can do to help here.
Cognition - I am still struggling to learn to pace my brain, and when I get it wrong, it basically shuts now all cognitive functions and I just need to lie down & rest with my eyes closed. This does not usually mean sleep, it’s just my brain needing to stop being stimulated.
Would love not to have to pace my brain, or have tools & tips for identifying when I need to.
Chris, is it possible to get a referral to a good NHS gyno for HRT advice etc, I requested one and made it clear how important it was for MS management and found it extremely helpful. I had several gyno appts for HRT and some physio appts for pelvic floor.
Things like 'Vagifem' (small dose of oestrogen in a pessary) can really help if you feel urgency to pee at night but don't have a full bladder, for example, as having less moisture due to less oestrogen can make those nerves more sensitive. Getting HRT can help with sleep and cognition, but I was also recommended B6 with Magnesium glycinate, Maca and Taurine to relieve anxiety, energy and sleep. Peri-menopause also affects the bowel and HRT can help with this too. I really recommend pushing for those appointments alongside your MS management xx
I’m on hrt. It has made a significant improvement, but it is not perfect. I may look into the b6 stuff too. Thanks
ChrisB Same dilemma. I need to rest my eyes, but if I close them, I’m asleep! Gah!
I’d like more help with pain management- how many of us have heard “MS doesn’t cause pain” ... well mine does, so I wish it was better understood so I don’t risk being labelled a drug-seeker in my attempts to get help.
Foreigner- absolutely painful. My neurologist told me not to stop pain medication at night. I don’t understand why pain isn’t relieved, I’m in the states and I have my theories.. I hope you get some help. 🌷
Thank you. I had some changes in my care team which meant a reassessment of meds but so far so good!
ETA: it was not at ALL easy to advocate for my needs in pain management
I’m glad it’s working out for you. Excellent! I have appointment with neuro in a few days. I am in dire of need coordination of care, particularly for vertigo and eye issues, which seem to be lasting far too long, and R back pain with this kidney adventure. The difficulty with a bit of pain control is perplexing. I understand. Be well!🌷
If there were treatments (treatments to address smouldering MS + the underlying EBV infection) which stopped the unrelenting worsening (not just stopping relapses), then most MS issues would improve eg better sleep, more incentive to exercise, better chance of staying in employment (good for cognitive function / self esteem etc). Much more difficult to “self-manage” when faced with a future of ever increasing disability. My friend in her late 50s operates her electric wheelchair with the one finger which still works. Her husband is drained from 30 years of MS. Self management shouldn’t be the way for them. They need proactive support from the health care system. I can understand the concept of self management with T2D, but advanced MS is a totally different ball game. Patients don’t need fancy graphics or route maps. They need one phone number (or an Amazon type page) so they can request anti-biotics for a UTI, a physio appointment or visit, CBT, appointment with a continence adviser….
It is horses for courses; self-management is not for everyone, but it does allow pwMS to tackle some of their own problems. The issue with MS treatments and using them early and effectively is the slow adoption of innovations. That battle is ongoing and the science as well.
Hello, the path of care has been very difficult and now I’m living in a care home with people with dementia etc. The transition has been heartbreaking but necessary.
I am sorry to hear this. In the current era of early MS diagnosis and early MS treatment, particularly with highly effective DMTs, we hope the need for care homes will be rare.
🌸
For me, I think better than flowcharts would just be education "campaigns" for pwMS that insomnia/fatigue/cognition are worth trying to treat. If you're trying to do your own research on say, fatigue, what you tend to learn is "80% of pwMS have it, we don't know what causes it, the medications are very hit or miss" whereas the reality is that there are a lot of NPIs that can help, and there are other causes to rule out! I spent a year going "well it sucks that I have fatigue forever now" and it turned out it was a B12 deficiency that could have been addressed much earlier if I had proactively sought to "treat" my fatigue. I get a newsletter from the Accelerated Cure Project (https://www.acceleratedcure.org/pastnewsletters) that has a great (not being facetious) format of "this is a bad thing that can happen to you with MS" followed by "it has been quite successfully treated with X/Y/Z for most people".
YES! So frustrating as a lot of MS information sites out there focus on stats and generalised views, there's a lot of gloss and not tangible help. I find most information sites are more geared towards the general public getting a quick overview of what MS is in order to support the 'charity'. Using stats creates an incomplete picture of MS to those that don't have it, and that stereotyped idea of what MS is then invalidates pwMS real lived experiences, it makes it extremely difficult to advocate for oneself with friends, family and even GPs!
Gavin I think the idea of a self management flowchart is a really good idea. However, I wonder whether the cognitive issues might be addressed as a priority? It seems there is no advice offered in this subject and I tell people that I am 50% of the wife I want to be. It is because I can no longer multi-task, a one word interruption to a task renders me having to start from the beginning, an inability to recall movies/books/conversations leaves me like appearing ignorant and dumb. But there is no MS assessment around the severity and because my ‘old’ (natural/pre cognitive decline) levels were rather high achieving ... or so I am told ... apparently nobody would notice my difficulties and nothing is being offered.
Yet as I read the comments from others it seems there are treatments out there.
The impact on life of cognitive challenges is so wide ranging - from relationships to employment possibilities to self esteem issues. I really hope it might be possible for cognitive issues and treatments to become priorities within your flowchart work.
Thankyou for your ongoing writing, research and help with our MS lives.
Absolutely Bron 🙏 nothing MS has to offer is a preference, but my biggest fear with MS is dementia and cognitive losses in language, memory and processing. There seem to be drugs and medications for other symptoms and maybe this is the reason that some serious symptoms are overlooked? I really hope this isn’t the case as there must be insights that explain the distinct cognitive issues we experience and an understanding of therapies that might help us regain or retrain or compensate for what we have lost.
As a marketer I agree you should focus one one thing for patients but I disagree with sleep. Awith the point that it’s important but to a patient already overwhelmed with a diagnosis telling them to improve sleep when they probably are already trying is demoralizing and will create a feeling of futility vs empowerment.
In talking to patients the number one keeping me up at night is dmd choice. All the sleep in the world doesn’t matter if you have highly active ms but are treating it with glatimer because “it’s safe”.
I want to stop hearing things like
“I prefer a pill” (in WHAT other category is it acceptable to prioritize form over efficacy when there is a meaningful difference “
“I don’t know how to choose between 10 options “ (no one needs that many options- amongst the highest efficacy there are less)
Or
“I don’t want side effects “ (ok does anyone talk about the long term side effect of NOT treating? Like you know blindness incontinence cognitive changes, anything impacted by undertreated ms)?
I think the idea of self management options like sleep and exercise (could argue exercise should be first) should be reserved only for those already on a high efficacy treatment but first we have much communications work to do so patient peer advisors no longer hear these most frequent comments at diagnosis.
Once a patient is on am effective treatment they willl also naturally educate them on other optimizations it’s a snowball effect.
First everyone has to feel urgency and take it more seriously.
Thanks for reading my sopabox :)
Yes, there is a large number of newsletters and the MS-Selfie infocards tackling these issues.
Sleep was, and still is to some extent, a major issue for me over the past year. I found some excellent information from the podcast The Huberman Lab with Dr. Andrew Huberman. He has a few episodes dedicated specifically to optimizing sleep. The episode from August 8, 2022 was most helpful for me.
Thank you for addressing this. I find your work and information so helpful.
Can only agree with the self management approach. I’ve long had the view that you need to be your own doctor. It really is a team effort though, working with your GP to Neurologist etc when they hold the keys to vital medications. However time is where you have the big advantage. Reading, learning etc. For me the Mind, Exercise, Diet, Sleep or MEDS approach has been particularly beneficial overall but it did take me a long time to get there. The use of Cladribine was certainly the game changer for me though. Just a pity it took so long to get it.
Yes, and I have researched the area myself. However at my last consultant appt I was told "I'd have to just put up with it"! Where are these specialist neuro-urology units you refer to in your newsletter? Do they exist in the UK?
Yes, the specialist units exist (we refer to the one at UCLH, which is based at the National Hospital for Neurology and Neurosurgery, Queen Square). However, neurogenic bladder problems are so common most general urology units are able to provide a decent service. Have you seen a urologist?
I was “on the list” for urology for over 2 years and got no-where. During covid symptoms that could have related to bladder cancer got me on a 2 week track (thankfully all clear), the urologist asked lots of wider questions about my bladder at the scan and within a month I had been assessed & was on mirabegron (pushed to avoid the anticholinergenics) for overactive bladder. It has been life changing! (If I’d known that would be the case, I’d have pushed harder to find out what was happening with my referral- which I suspect hadn’t been properly made). It’s too easy to muddle along and try & cope as little by little things get harder, without realising there are solutions.
Yes, have tried nurse administered cystistat, discontinued as resulted in UTIs, now on Hiprex. A catalogue of unsatisfactory consultations - perhaps not for a public forum.......
PJ’s - I get it. After a year of Hiprex with Vit C, I’m taking a breather. Had 4 UTIs by August. I may resume. Don’t know. Best of luck.🌷
Chris I have a similar Mirabegron success story via UCLH. My local continence service tried all the conventional stuff, and the pelvic floor stimulation machines, try self catheterisation, try Tolterodine, cut out caffeine. I knew it wasn’t due to my pelvic muscles and was at my whits end. I eventually agreed to try Mirabegron and stopped needing to wear continence pads.
And after spending YEARS being told to try all the different ineffective treatments.
Why did it take a self referral to UCLH to get this?
...gastro-enterologist 🤩. Missed the wrong text correction.