Barts-MS rose-tinted-odometer: ★★★★ (black&white)
I once proposed the question, “ask not what your healthcare professional (HCP) or MS research community can do for you, but what you can do for yourself?” and had quite a lot of pushback from some readers. Why?
I started developing this diagram more than a decade ago summarising the holistic management of MS. What I mean by this is that if we, or more importantly you in partnership with your HCP, address every item on this diagram you should be able to optimise the management of your MS and maximise your brain health.
Surely the therapeutic aim in MS must be to get every person with MS to old age with as healthy a central nervous system as possible so that you can age normally. I find it difficult to communicate such a long term target to my patients and their families because most people, including the healthcare community, have relatively short or intermediate-term goals.
Please note the diagram on the holistic management of MS is not all black-and-white but has some shades of grey. The reason for the grey boxes is that we are not there yet in terms of having licensed treatments, but we are working on them. You may realise that this diagram covers the management of not only active MS, but smouldering disease as well.
Please note there is some overlap between MS-specific targets and non-MS or brain health targets, for example, exercise is neuroprotective and promotes remyelination and recovery. Every item on the diagram above has been covered before on this blog so nothing should come as a surprise to you unless you are new to the blog.
Are you up for taking on the ‘Holistic Management Challenge’ yourself? Do you have enough information? Do you have enough support from your HCP to do so?
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.
by way of a reminder, can you kindly tell us more about the following please 1) Neuticeuticals, 2) anticholinergics and 3) anti-aging medication?
Nutriceuticals are food supplements, i.e. they are not controlled by drug regulators but food regulators. Examples include vitamin D and alpha-lipoic acid.
Anticholinergics are drugs that block cholinergic receptors and cause cognitive impairment, examples include anti-bladder drugs. The caveat here is some of these drugs may promote remyelination and hence there is a double-edged sword to their use. But in the context of remyelination, you may only need to use them in a short window.
Anti-ageing drugs are those that have been shown to reverse biological senescence. In the MS context, the most well studied is metformin. Ketogenic diets, at least in animals, are also antiageing. There is a big industry push to find antiaging drugs with a lot of venture capital investment in start-ups in the area.
Prof G, what do you mean by ‘wellness’?
Please read the following post: https://multiple-sclerosis-research.org/2016/04/clinicspeak-brainhealth-wellness/
The Global Wellness Institute defines wellness as the active pursuit of activities, choices and lifestyles that lead to a state of holistic health.
There are many domains to wellness which include intellectual, emotional, physical, social, spiritual, occupational and environmental. In other words, wellness goes way beyond just being physically healthy. This is why I am planning to become a medical philosopher to tackle subjects like wellness 😉
Isn’t this pyramid just another way of repackaging the advice of Prof. Jelinek?
https://overcomingms.org/recovery-program
Or where do you see the distinctions? Do you think e.g. that OMS puts sufficient focus on anti-inflammatory treatments?
Sort of but with a different emphasis. I am promoting biohacking and ketosis OMS doesn’t.
In my opinion, although many of the OMS lifestyle recommendations are sensible, the writer has dubious nutritional knowledge (definitely not evidence based) and is obsessed with avoiding milk. Based on the idea that a peptide sequence in cow’s milk closely resembles one found in myelin basic protein (sound like glatiramer?) oh and MS is common in countries where cow’s milk is drunk. Like sub-Saharan Africa?
And I dislike the way OMS has become a cult. Still, as cults go, this one’s harmless enough. Unless you love butter and cheese! 🙂😉
Absolutely in favour of this but the elephant in the room is access to HCPs. I have no MS nurse and no easy access to my neurologist ( who for much of this year has had no regular admin support) and who at the moment I have one 10 min phone conversation with a year. Getting hold of a clinician about an acute problem is hard enough let alone having the time and opportunity to discuss holistic management.
Health systems differ as well. I’m in Spain and the expectation is that patients (in general) are passive and treated by doctors who make decisions on behalf of the patients. Yes – you are asked if you want the treatment but it’s not a particularly interactive process and the idea that we would exercise agency and choice (and responsibility) over our treatment doesn’t seem to be front and centre of their thinking.
On top of that, MS patients are expected to be, by and large, fairly passive and experiencing serious and fundamental problems with the condition. This isn’t helped by the HCPs themselves erring towards the “we don’t know what to do about smouldering MS so we’ll pretend it doesn’t exist and hopefully it will go away”. Coincidentally I meet a lot more MS patients in wheelchairs than I saw in the UK when I was at The Royal London. There, the focus was more on managing side effects and having us all live lives as normal as possible.
The solution is probably that we have to take the bull by the horns and force the situation.
If you’re in the UK and can contact the MS Trust they might be able to help with locating an MS nurse specialist. I don’t know what else to suggest? Are there organisations / charities for those of us looking to tackle MS head-on?
^^^^ ^ ^ This! Also, I wonder if it is appropriate to expect neurologists to be advising on all these “add-ons”. When I speak to mine he just wants to talk about MRIs etc and when I asked about diet once he just laughed and said to eat healthily. I’m not sure he thinks it is in his remit to advise on supplements etc. Is it? He has a million things to do, numerous appointments to get through. Also, a lot of the add-ons don’t get a ringing endorsement from the medics when you can and do bring them up. No evidence or not enough.
It is about taking responsibility for actioning the list. Take sleep hygiene, for example, 6 to 7 out of 10 of my patients with MS when asked about sleep have a problem. Most commonly is relates to bladder problems. which they just learn to live with. Who should take responsibility for looking after your bladder?
“It is about taking responsibility for actioning the list.”
Totally agree. I think attending to this list is really our responsibility as people with MS. For that, though, the patient has to know where to get information and maybe some people might need support and encouragement to change their diet, for example. But that could come from lots of channels – GPs, education, friends/family.
I agree entirely Prof G.
I was diagnosed RRMS sensory spinal presentation with lab support incl MRI in 1994 at age 17 when there were no DMDs.
I quickly realised that this was mine to manage, and in my hands to make best of so became a voracious reader & researcher. I quickly worked out the latitude differences in MS prevalence & began taking Vit D in 1995. Also started B12 shots, fasting, high veg, low sat fat, no processed, no sugar, gentle exercise, stretching, other supplements etc. I’ve done many many things over the years to proactively manage my MS – some false starts like having all my fillings removed and replaced with white amalgam – still, my teeth look gorgeous:)
I’m 30 years from 1st attack, 27 from dx and still only EDSS 3.5-4 and not SP.
I follow your program with interest and have added all your recs to my management with great benefit to my fatigue levels.
I was taken off meds as my Lymphocytes/wbc /neutrophils bombed on every single one even Avonex. I’m living proof that your MS is in your hands. I have had some input from my MS Neuro & nurses but I generally just tell them what I need and take their suggestions too. I’m off DMDs for 5 yrs now and 5 stable scans.
I’m living proof that your MS is in your hands. Listen to the Prof 🙂
you’re reminded me – when I was diagnosed I was prescribed 5000 units of vitamin D daily. But there was no follow up. I’ve continued taking it (buying OTC as cheaper than prescription) then recently asked my GP to get it tested along with a blood film the hospital had requested (I have high MCV with B12 etc all fine so that was the next step in investigating).
My vitamin D level came back looking good (and no alarming results from the other tests so I’m just an outlier when it comes to MCV apparently).
But I had to chase all this. I don’t know if others are as a) educated (I have degrees in law, science and politics so I’m good at processing information) or b) proactive as me. It would be nice to see our GPs taking more responsibility. Presumably they get more funding for patients with long-term health conditions.
“I’m 30 years from 1st attack, 27 from dx and still only EDSS 3.5-4 and not SP.”
You are definitely early spms at edss 4…and if you notice stiff spasticity…you soon will.
You need hsct now as majority have it stop their progression.
Otherwise you will hobble in a year or two….and get more progression in 6 months than you did in 30 years. You stopped dmt and have no lesion on scans…it’s sure sign of spms.
“The CD8+ T-cell response to EBV lytic phase antigens is reduced at the onset of MS and throughout its course” Meaning over time your t cells response to EBV is reduced…and why ms progresses over time. Nothing to do
with your supplements..given more time everyone progresses. These articles explain why you’ve done well so far.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5292561/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3270541/
Please don’t let your ego think you’ve done things that have changed your disease course..
It’s only your genetics and level of cd8+ cells that have done this…others w/low levels
of cd8+ progress in their first 10 years through
no fault of their own.
This diagram is excellent and is exactly what I’ve been trying to track down/piece together.
Taking your comments about prehabilitation, I adopted IF/Keto over the summer and have started various other lifestyle changes (AF, for example)
Like another commenter the term neutraceuticals is new to me (and is probably where I will now spend my evening).
In response to your specific questions, I am absolutely up for the Holistic challenge. I don’t particularly have the information I would want – my adoption of IF/keto was based on a chance reading of your comment (and that sent me down a rabbit hole of wider reading). I suspect I will find a similar rabbit hole re neutraceuticals. Arguably with this post I now _do_ have the information I would want. I am obviously proactive here and there must be loads of people who won’t see this post. How do we make this easier? My neuro team’s response to my diary changes are probably best described as indifferent, so more support there would be appreciated though I can understand why that might be difficult.
I will be trawling through old blog posts to find the details on each topic and no doubt will be adding to my holistic strategy.
In short, this is hugely useful to me (and I would hope others). Thank you.
Prof G,
Thanks for this. Thanks to your advice I’m a poster child for the brain health interventions (with the exception of metformin).
“I started developing this diagram more than a decade ago summarising the holistic management of MS.”
Anti-inflammatory, neuroprotection, remyelination, neurorestoration.
In reality, we only have approved therapies to address one half of one of these four therapeutic interventions. We have anti-inflammatories for focal inflammation / relapses, but none for the slow burn smouldering inflammation. Therapies to tackle smouldering MS will have the greatest impact on Brain Health as smouldering MS is the main driver of brain cell destruction. I’m not sure if any of the brain health interventions directly impact smouldering MS.
“ask not what your healthcare professional (HCP) or MS research community can do for you, but what you can do for yourself?” I’m more than happy to follow this mantra, but I still ask the HCP to help with smouldering MS. How hopefull are you that we might see therapies to help address smouldering MS in the not too distant future?
I am in New Zealand & diagnosed with PPMS. My diagnosis consult ended with there’s no treatment, good luck, you’ll be in a wheelchair within 5 years.
My own research has led me to develop my own treatment plan which is very similar to the holistic model published here.
Your post is great validation. Each year I feel better & at 62 years of age I have to be satisfied with that.
I know you
🙂
Stay strong
Good to read this, but absolutely shocking that these things need to be said, particularly to HCPs.
Again agree – but trying to get ( in my case) women’s physio appt for bladder issues took months. I do not expect neuro to take on all the add ons but we do need support when we are also managing the day to day condition itself . In my case ( and many others I speak to) the support is just not there which is as frustrating for the clinicians as it is for patients.
This is fantastic, exactly what I came here today to find! Excellent timing. Thank you, Prof G.
I live in Somerset, officially diagnosed in 1999 with RRMS & started DMT Rebif. I had a 6-monthly appointment with neuro consultant or MS nurse…until July 2012. At that appointment the neurologist told me that I was now SPMS & little has been changing in my condition, so there is no point in continuing with these appointments, because “as you can see, we’re really busy, so better to try & help more people”! And that was it, I have never seen anyone since, & never received any letter, phone call or email from anyone! I have been completely wiped out it seems.
I read with envy when people report abut how wonderful their MS nurse/consultant is. It was always difficult getting hold of mine even when they existed. I have sourced my own physio etc.
On the Neuticeuticals front, I’m pretty sure I’m overdosing on vitamin d at this point but my levels are still always low. What could be the reason?
Appropriate dosages vary from individual to individual. The RDAs that are published are just averages. If your levels are low I don’t think you can be overdosing–just keep increasing the dose by, say, 1000 IU a month until your levels go up.
I’m actively looking for an neurologist/MS-specialist with a holistic approach (and have been asking around for this).
I live in Belgium, where most neurologist are happy to prescribe you a DMT. That’s about it.
I’m reading a lot about MS, supplements, fatigue-management, sleep-management, DMTs,… but I never get any feedback on this by my neurologists. I don’t mind doing a lot of research myself, or being the one who ultimately makes decisions, but I would expect my treating neurologist to be open to questions I have in order to optimize my quality of life.
I know this is evidently not your fault prof G, but sometimes I get frustrated by some of your posts;)
Healthcare systems were generally designed around acute one-off problems and this is why they battle to manage chronic diseases holistically. The exceptions being mental health, obstetrics and some of the big oncology communities. For mental health it is because of necessity; if you don’t manage it holistically you fail. For obstetrics, it is because it is not really but normal physiology and there are a lot of metrics around outcomes that show why the holistic management of pregnancy, childbirth and postpartum is important. In cancer, it is because of big investment in certain areas that make a real difference; a good example is breast cancer diagnosis and treatment.
Quite true.
But setting apart the design of health care systems in general, it sometimes feels even more basic on a person-to-person level: how can your treating neurologist not show interest in helping you improve your quality of life, if he sees you every 3 months, for the rest of your life?
This is not (simply) a matter of how your health care system is organised.
I work as a public prosecutor, and a lot can be said about the faulty organisation of our legal system. But I never forget that every victim and every perpetrator is a person, and deserves to be treated like one.
Please don’t shoot the messenger.
quite the contrary – happy to see pleas for a holistic approach. Just still looking for one in my country;)
This is where I think the Overcoming MS programme is valuable as it advocates taking prescribed medication along with lifestyle measures.
Doctors are starting to refer people for social prescribing and I’d like to see more of this. Parkrun is an obvious example but I think one of the things I do (besides eating well and exercise) that has the greatest effect on my wellbeing is volunteering. I volunteer at parkrun, with Goodgym (a group where members get exercise while helping out in their local community), at a local fruit and veg co op set up as a pandemic response, and at a vaccination centre near me. It’s quite a lot on top of a full time job and marathon training (my alarm goes off at 6am 7 days a week), but I think it’s great for my mental health and sense of self-worth and definitely hits the social targets above.
I really don’t like OMS. From what I have seen of their forums, people following the OMS plan tend to leave DMTs as a last resort (only starting to use them after years of trying the diet and seeing no improvements). And if they see improvements after starting the diet, they avoid DMTs altogether because they think they have the MS under control now. Even Jelinek himself is apparently still using Copaxone instead of a more effective DMT. I don’t see how this can be anything but harmful.
There seems to be a virtuous circle here: the things that we can do for ourselves that are good for general health/long health-span etc are also the things that help us to deal as well as we can with MS.
Yes, I attempt most of the things in that right hand column that are within my power to do. HCPs are necessary for prescription meds – and I might bite the first one who tries to take me off HRT – but I don’t really look to HCPs for lifestyle ladvice because I doubt whether they know much more about it than I do as a civilian. In terms of nutrition – particularly the benefits of low-carb nutrition – they probably know less and are as likely to be UNhelpful as otherwise.
Are you on testosterone replacement? How does that work for you.
Pre diagnosis, for years I was convinced my T was lowish but nobody ever wanted to do anything about it….
This list is pretty representative of the things in my life that I KNOW I could do better at.
I know I’m overweight, inactive a smoker and I like a drink. Dealing with these things is something which is within my gift……I can chose to to better and I’m really trying to do that. I’m working on my weight – it’s a challenge with the funky thyroid thanks to Lemtrada but I’m doing an IF / Keto combo which in itself reduces drink because of the reduced carbs.
I don’t need my neurologist to tell me that I need to do this – it’s in front of me every time I look in a mirror or just look down at myself. Medically there are things that could be done to me to help but those aren’t for my Neuro to arrange or manage. Nor have I asked my GP to assist with it – but if I needed help that’s where I would expect to go to ask for such things.
Smoking is an addiction and therefore should be managed as such. There is a lot your GP can do to help you. It has been shown that people who enrol in formal programmes with NRT (nicotine replacement therapy) are much more likely to stop smoking. All you need to do is ask or you may even be able to self-refer. The latter depends on the service.
Smoking is clearly harmful, but what’s your opinion on the neuroprotective action of nicotine? If a smoker quits by taking up a NRT/vaping is sticking with that potentially beneficial?
Now nicotine is a medicinal product and not a nutriceutical. This would require a randomised controlled trial. But as you are likely to ask who will do such a study?
I suspect given the link to tobacco it’s not top of the list of potential studies. Interesting area though based on work already done suggesting positive effects re inflammation and auto-immune responses.
Maybe a future observational study as more people switch to smoking alternatives?
https://www.nature.com/articles/aps200967
You could try just improving one thing, instead of focusing on everything at once.
I smoked 50 cigarettes a day for 17 years, and quit cold turkey 10 years ago, using nicotine patches, and not telling anyone, in order not to raise expectations. I found it quite liberating to do that on my own.
Totally agree with you Prof G. I was diagnosed with PPMS 9 years ago and am now EDSS 6.5. But I still exercise as the psychological benefits are as important as the physical. Diet could be better as I love good food but I do intermittent fasting to help weight control. Access to HCPs is better than some. For me, educating myself on MS from the start has helped and following this blog has been invaluable. So I’d add MS education (from trusted sources) to your list.
Thank you for putting this post up – it is very helpful! I have a few thoughts:
As you write ‘most people, including the healthcare community, have relatively short or intermediate-term goals.’ The mentality has to change, and I realise that it cannot be an overnight thing. Possibly, could it be helpful at the point of diagnosis for people to be given this information? We are given lots of booklets at diagnosis about DMDs and MS charities for example – why not a booklet setting out lifestyle changes that are known to be helpful for symptoms and potentially also have the effect of improving disease outcomes (does something like this happen when people are diagnosed with Type 2 diabetes – how symptoms can be delayed or even reversed through lifestyle interventions as you could follow a similar format?)
Also, some of these suggestions could be difficult for people on lower incomes to implement – I am thinking in particular changes to diet, supplements and initially some exercise equipment/classes. Could someone influential advocate for more financial help from government to be given to people in these circumstances – off the top of my head possibly in the form of grants, supplements being given under prescription and vouchers for healthier food options? I think it is important for people to see that the Government have the view that ‘Holistic Management’ is a long term approach too and are invested in it.
Brilliant post!!
This is the part where people with MS have to take responsibility.
Some do, some don’t. We’ve got to look after our brains more than most.
Science can only do so much at this point. So give it your best go people. Don’t make it a chore 💪
Re HRT as an anti ageing ..are you inferring that could be useful .
I always thought I began to deteriorate post menopause .
I assume a sympathetic GP would be necessary though
There is a lot of anecdotal evidence, at the very least, to suggest there is a link between menopause and MS onset or worsening. And there is the fact that women do not get relapses (often anyway) while pregnant.
I would like to discuss some of these interventions with my neurologists at my next appointment later this summer. What dosage of metformin is appropriate for neuroprotection in some one who does not have metabolic syndrome or obesity?
What is HRT for men?
Testosterone
Ask a HCP what holistic actually means, and wait for the blah blah blah. We cannot get the basics and you more than most surely know this.
Try and get a neuro-urology referral, appointment and advice, that’s almost a year I can report; this for someone who has research and clinical education, and connections within the in the London Healthcare system. What are the socially disadvantaged supposed to do and to make of this post?
As for self care ..,people don’t know what they don’t know.
In medical literature you will find up to 300 citations and differing descriptions of ‘self-care’. I would argue, like holistic care, it is the emperor’s new clothes. Not that new actually.
I for one Prof G would urge you to use your knowledge of MS, and your voice to lobby for various aspects of care for PwMS to be properly resourced. What about physio?
The wonderful Professor Havi Carel, who I came across via this blog, I don’t think can be bettered for her work on Medical Philosophy. Her work is outstanding; her strength is that she absolutely gets it because she has a serious illness herself. You have to have it to get it. Sad but true.
Any suggestions then for the community? Rant and do nothing? Or do you frame the debate? The question is how small is your canvas or how big? Please tell us what are you doing to manage your MS?
“The question is how small is your canvas or how big? Please tell us what are you doing to manage your MS?”
Are you blind?…..people w/edss 4 are posting they aren’t sp and have treated
their ms w/vitamins and diet..and proof it worked cause they aren’t sp.
Fine line between encouraging hsct and alemtuz..and having people
burn their neurological reserve while thinking their vitamins and diets
are working great..Does this make you proud…? Does this make you an
accessory to their decline..?
“I’m off DMDs for 5 yrs now and 5 stable scans.
I’m living proof that your MS is in your hands. Listen to the Prof 🙂”
Scary..how much damage you encourage with these alternative therapy
to manage your ms. These people suffer accelerated brain atrophy that
will kill/disable them their problem is not diet/weight.
Bravo Bernadette! You hit the nail on the head, and finding out about Havi Carel is worth at least as much as this entire blog, so thank you for that! You’re right, she definitely gets it.
Do really expect all MSologists to have MS as well. It is fine discussing the lived experience, but it is simply not feasible to expect neurologists to have a lived experience. All Prof G is asking for is for pwMS to be involved with their care and to take some responsibility.
No, of course not. But since we’ve been discussing “fine lines” of late, it’s a very short distance from ascribing responsibility to ascribing blame. So when you don’t DO all the things you “should”, then the condition of your condition is easier to blame on you. Being dismissed by society and yes, by doctors, as “giving up” or not caring about your own condition enough, is a very real danger here. Blame is baked into this whole thing. So much so in fact, that people are often prone to point the finger at themselves.
Have you ever had cancer? I have, and I can assure you that in Cancer Land a significant proportion of patients blame themselves for their cancers. The first thing that flashes through the mind (it certainly did for me) is what did I DO wrong? People often go down a path of reasoning along the lines of, if only I hadn’t done x and y, and had done z, I’d not have this. We have been so indoctrinated in the idea that our own agency is the primary determing factor in our successes and failures, that when our health “fails” we can only assume it was because of some failure on our part. We have subltly been taught to assume that if we can control all the variables all the time, we won’t get sick. Except we can’t control all the variables all the time and we do get sick, and sometimes we do even when we have supposedly perfect habits.
So the idea that if we “address every item on this diagram you should be able to optimise the management of your MS and maximise your brain health.” has a whole lot of potential to be just one more “should” list that requires all of one’s attention all the time for the rest of one’s life. This is unrealistic. Heck, I get exhausted just reading that list. And so many of the things on that list are not ones that a person can reasonbly be thought to have much power over, like social isolation. Many of them require a doctor, and more specifically a doctor with a certain mindset. Those hardly grow on trees, as the daily rants about the MS “community” around here highlight. And I can’t really see my neuro prescribing metformin. And HRT as anti-aging? Seriously? Didn’t we get past this with the breast cancer kerfuffle a few years back?
Basically, do the best you can with your situation. Clearly, this post was never directed at the progressive contingent, and that’s fair I suppose. But it’s irritating to those of us who are beyond HIIT and hours of aerobic exercise per week. This is not some “challenge” to be taken, it’s about finding the best ways for YOU to address your long-term health without having it consume every thought and every hour. And doing that without everyone around you parsing your virtuousness (or lack of) down to a gnat’s ass all the time.
That is a good point.
I have had a similar experience with a longlasting viral infection, and postviral asthenia:
‘This is the list of things to do, and if you don’t get better (or don’t do everything on the list), well, then you are doing something wrong, and you can’t expect to get better, can you?’.
Same with DMT-management: it is ‘outsourced’ to a DMT-management company that gives patients a program to follow, and there you go, just follow the rules and you should be fine.
I didn’t read prof G’s post this way, but of course the neurologist should participate also in the holistisch approach, and not leave everything to the patient.
[MacBeth]
“Eye of newt, and toe of frog,
Wool of bat, and tongue of dog,
Adder’s fork, and blind-worm’s sting,
Lizard’s leg, and howlet’s wing,–
For a charm of powerful trouble,
Like a hell-broth boil and bubble.”
I’m all for MSers taking responsibility for helping manage their disease. But I also paid a stack of taxes and expect my publicly funded healthcare system (NHS) to do its bit. MS should be “treated like cancer”. No oncologist would wait for a second tumour to develop before commencing treatment. No oncologist would present a cancer patient with a list of 20+ cancer therapies and say “it’s your decision”. A number of my family members have had cancer treatment and the aim of all the therapies used was to stop the cancer in its tracks. The oncologist was treating the “real cancer”. My family members with cancer received limited advice about how they could manage their cancer “holistically”. Why – because the treatment approach was to kill the cancer not let it fester away. I suspect that pushing the responsibility on MS patients to manage their disease holistically is a recognition that the current therapies aren’t killing off the real MS disease processes. I’m in the ideal weight range, ideal BP, exercise very regularly, Vit D replete, never smoked, never drunk alcohol, intermittent fasting, 7 hours sleep a night…. I had an induction therapy shortly after diagnosis. I can do no more to manage my MS holistically (I suspect I’m doing way more that most cancer patients). I’m just waiting for the MS professionals to play their part ie to deliver on the treatments to stop progression, protect nerves and encourage repair.
“I suspect that pushing the responsibility on MS patients to manage their disease holistically is a recognition that the current therapies aren’t killing off the real MS disease processes. ”
But of course…if it’s all one disease…why no ppms therapy..?
https://pubmed.ncbi.nlm.nih.gov/22084124/
Every “RRMS” therapy is also a “PPMS” therapy, just less effective. Every subtype of MS is inflammatory from beginning to end and neurodegenerative from beginning to end. Unfortunately the world is full of backwards neurologists who refuse to recognize the obvious.
“In conclusion, our results showed a modest but beneficial effect of interferon beta-1b on clinical variables and on the MRI measures reflecting nonlesional damage 5 years after trial termination.”
Seems like most governments have decided the results are
too modest to pay for.
“Every subtype of MS is inflammatory from beginning to end and neurodegenerative from beginning to end.”
Yes..of course but it’s a matter of how much inflammation and
neurodegeneration is there.
For those of us with PPMS and do not qualify for any DMT, self holistic management is all that we have to give us hope to slow down the progression and the sense of being proactive with this disease.
If I were you I would go into debt so I could get HSCT in Russia. Anti-inflammatory therapies still impact PPMS. Debt is a small price to pay for less brain damage. Also it’s not true that people with PPMS don’t qualify for any DMTs, ocrelizumab is approved for PPMS. If you’re not at least on ocrelizumab you need to fire your neurologist asap.
“If I were you I would go into debt so I could get HSCT in Russia.”
Yes..many are able to stop progression..but it seems only about
50% effective..if that..as usual works better in cases w/lesions.
Unfortunately in the UK NHS if you have PPMS and do not show any lession progression on your MRI scan then you do not qualify for ocrelizumab. You only qualify if your MRI shows extra activity as well.
What am I doing? I stumbled onto the @OvercomingMS program and @GeorgeJelinek book a year after diagnosis & following the program as a comprehensive approach (lifestyle + meds ) has been game changing, for me. My neuro is also very much in board with lifestyle + meds.
Add to that education – the OMS podcasts led to me even knowing of this blog and that Dr G was a neuro sharing education and research constantly . I’ve learned more and become increasingly curious & motivated.
That’s how I’m handling things at the moment…grateful I found something that works, for me.
I do not think jt is fair or reasonable to expect patients to be able to take full responsibility for this without proper support. For example:
1) regular exercise requires time. If you’re lucky to still be working you may not have sufficient energy to exercise after you’ve used up all your energy for work. Accommodations may be needed
2) therapies like metformin HRT and treatments for comorbidities require persistence luck getting appointments and effort to convince professionals to get this. Support is definitely needed here it’s too much for a patient who already has to work twice as hard to get through a day
3) cost. Supplements gyms etc are expensive. And ms is the most expensive disease you can get. If these are medically necessary prescriptions and programs could help offset the cost. For example many cancer centers offer free nutritionists and also ways to get local exercise programs for free. Every ms center should have a dedicated nutritionist and physio who are actually accessible. Social workers too. This is needed for success
I think it’s great to empower patients and know they can do more to slow the shredding but without social and structural support youre setting people up for failure and then they’ll just hate themselves for it.