If we break down everything we can think of that goes into improving MS outcomes and then improving it by 1%, we will get a significant improvement when we put them all together.
I understand the concept of marginal gains and i do what i can but it is also important not to stop living either. MS for me is like a bad dream that you're relieved to wake up from except it is real. I can be out with friends....everyone drinking merrily and having a great time and then suddenly you remember.....oh sh*t, i still have MS. My point is that i dont want to make every decision in the context of this blasted disease and sometimes its ok to just go out and live the life you would have if you didnt have it. Surely that has to have some benefit to the mental health of a patient?
I run 5km, three times per week and have a strict bed time routine. I don’t smoke or drink alcohol. I drink a lot of water and so far this year, I haven’t had a UTI. My main challenges are diet and stress which I find a constant challenge.
Hello Professor Giovannoni. Apologies for asking this question the is not linked to this, but I would like to ask what percentage of your patients have oligoclonal bands in csf and serum? After just receiving the results of my lumbar puncture, the consultant said it was quite rare. I am now awaiting the blood results for the myeloma tests, and all that entails, which I am sure you know. Do you know how many of your patients have MGUS or myeloma? I was convinced it was MS, from my symptoms, so this is somewhat a shock. Many thanks. Eve
Sadly not all neurologists consider things holistically. The chap who diagnosed me (who was not specialist in MS) never mentioned any such things. When I discovered the MS Physio Therapy Centres (where you can exersize and so much more) he actually said he didn't think it would be very helpful!
Thanks for this. I was curious that in this article you don’t go into detail on alcohol consumption. Recently, it seems that some medical authorities are taking the position that any alcohol consumption is bad for brain health. Where do you come out on this?
Fantastic topic! Yes, I follow Marginal Gains. I have come to believe our MS self care should begin with brain health, because of done prooerly, physical and social health follow.
Dr G, how important is brain volume loss? At my last MRI, no brain volume loss but one small enhancing lesson was detected. I celebrated no brain vol loss, but my neurologist focused on the lesion. No inquiry about my total wellness....ie I am working and very socially engaged in many aspects of my life. Do frustrating!
I exercise most days, I am fitter than 90% of my "normal" friends. I am 48 and still fit in the dress from my uni graduation ball!
I have been trying to discuss swapping out amitriptyline for a good few years with my neuro but I haven't actually seen him (even telephone consultation) in 3 years. My MS nurse just says it "works for you" even when I talk about difficulty passing urine first thing even if I wake up bursting and that I think my ability to make decisions is hampered by the fact I just can't keep to a single train of thought. I did try to discuss with the pharmacist at my GP surgery during med review and they just said speak to neuro. I have also discussed with GP as I think that sometimes my early morning passing urine issues results in uti.
Amitriptyline does cover lots of issues for me, TMJ syndrome (which I have had since I was a child and regularly makes my dentist pull a funny face), facial neuralgia (not TN because when it's there it's constant), painful legs and originally it did stop me needing to pee over night. But I don't think I get great quality sleep on it.
I practice this and believe in the concept but don’t feel it’s feasible in the covid era until some serious problems are solved.
Reduce infections? Well like many MSers I take a b cell depleter. Have no other comorbidities other than mild well controlled asthma, don’t smoke, walk 5 miles on the regular, excellent bloods and bmi. Yet despite all jabs, an n95 indoors and evusheld every 6 mos, have had covid twice in just a few months and both rounds were moderate/serious with very high fevers for a while. Both bouts resulted in weight loss and the second round came too soon to have gained back all the weight lost in round 1.
Increase Social health? It is hard to engage socially when you are either sick with covid or all social engagements are indoors unmasked and you cannot get adequate covid protection. I can report wearing an n95 at a cocktail party is more isolating than staying home.
Even if you took your mask off any social gains would be destroyed by the resulting repeat infections, constant quarantine, weight loss and inability to exercise.
Before asking pwMS to follow this advice health professionals must help us solve for a way out of this impossible sophie’s choice.
Thank you for this discussion. It covers quite a lot of ground. The most I can do is keep standing up as much as possible, and I believe I’ve mentioned this, forcing myself to continue reading and otherwise challenging my brain. I often do feel lonely from the standpoint that I’ve lived a long while with this disease, and I definitely know who my true friends are!
I love the idea of HITT. Walking/swimming in the pool and just walking get tedious. Re swimming, I find I can’t dunk my head without balance panic. Vertigo can be triggered fairly easily and quickly especially with head turning.
Unfortunately, we don’t have physiotherapists here in the states where I am. We have physical therapists who know nothing about p/MS. These people don’t understand that their usual protocols will exacerbate tremor so badly, it isn’t worth it. So I’m wondering if HITT can be modified, and has anyone undertaken that?
The other issue is sleep. Let’s just say it’s dreadful, which is why I try to stay as active as possible during the day and take a short nap after meditation in mid afternoon. Alas, the only thing available for sleeping is cannabis, which I personally hate. I feel like I have a hangover the next day. Yes, Prof G, I too would rather have good wine! But not a hangover. :) It’s amazing how differently our bodies process medications.
Many thanks for this Prof G. Do you think it is worthwhile taking alpha lipoic acid and/or propionic acid? Do you think there is any downsides to taking them?
For those of us on HRT, should we get ourselves onto a high dose of oestrogen even if the standard dose controls menopausal symptoms, just thinking about risk/potential benefit.
I understand the concept of marginal gains and i do what i can but it is also important not to stop living either. MS for me is like a bad dream that you're relieved to wake up from except it is real. I can be out with friends....everyone drinking merrily and having a great time and then suddenly you remember.....oh sh*t, i still have MS. My point is that i dont want to make every decision in the context of this blasted disease and sometimes its ok to just go out and live the life you would have if you didnt have it. Surely that has to have some benefit to the mental health of a patient?
Here is my wellness protocol:
- daily exercise (swim, weights, stationary bike)
- plant based diet
- 60 Fl oz water daily
- 7 to 10 thousand steps daily - everyone should use pedometer app free
- Wi m H off breathing and cold showers
- lots of so ill engagement
- daily chess....I am a beginner
- occasional 24 hour fast. I did IF for 4 years.
Daily prayer (I am a Christian) - plus weekly memorization
Fire and wire!!!
I practice brain health … making myself remember … walking talking etc! Thinking positively also helps! Drugs do not help… remember how it used to be!
I run 5km, three times per week and have a strict bed time routine. I don’t smoke or drink alcohol. I drink a lot of water and so far this year, I haven’t had a UTI. My main challenges are diet and stress which I find a constant challenge.
Hello Professor Giovannoni. Apologies for asking this question the is not linked to this, but I would like to ask what percentage of your patients have oligoclonal bands in csf and serum? After just receiving the results of my lumbar puncture, the consultant said it was quite rare. I am now awaiting the blood results for the myeloma tests, and all that entails, which I am sure you know. Do you know how many of your patients have MGUS or myeloma? I was convinced it was MS, from my symptoms, so this is somewhat a shock. Many thanks. Eve
Sadly not all neurologists consider things holistically. The chap who diagnosed me (who was not specialist in MS) never mentioned any such things. When I discovered the MS Physio Therapy Centres (where you can exersize and so much more) he actually said he didn't think it would be very helpful!
Thanks for this. I was curious that in this article you don’t go into detail on alcohol consumption. Recently, it seems that some medical authorities are taking the position that any alcohol consumption is bad for brain health. Where do you come out on this?
Fantastic topic! Yes, I follow Marginal Gains. I have come to believe our MS self care should begin with brain health, because of done prooerly, physical and social health follow.
Dr G, how important is brain volume loss? At my last MRI, no brain volume loss but one small enhancing lesson was detected. I celebrated no brain vol loss, but my neurologist focused on the lesion. No inquiry about my total wellness....ie I am working and very socially engaged in many aspects of my life. Do frustrating!
Thank you Dr. G!
I exercise most days, I am fitter than 90% of my "normal" friends. I am 48 and still fit in the dress from my uni graduation ball!
I have been trying to discuss swapping out amitriptyline for a good few years with my neuro but I haven't actually seen him (even telephone consultation) in 3 years. My MS nurse just says it "works for you" even when I talk about difficulty passing urine first thing even if I wake up bursting and that I think my ability to make decisions is hampered by the fact I just can't keep to a single train of thought. I did try to discuss with the pharmacist at my GP surgery during med review and they just said speak to neuro. I have also discussed with GP as I think that sometimes my early morning passing urine issues results in uti.
Amitriptyline does cover lots of issues for me, TMJ syndrome (which I have had since I was a child and regularly makes my dentist pull a funny face), facial neuralgia (not TN because when it's there it's constant), painful legs and originally it did stop me needing to pee over night. But I don't think I get great quality sleep on it.
I practice this and believe in the concept but don’t feel it’s feasible in the covid era until some serious problems are solved.
Reduce infections? Well like many MSers I take a b cell depleter. Have no other comorbidities other than mild well controlled asthma, don’t smoke, walk 5 miles on the regular, excellent bloods and bmi. Yet despite all jabs, an n95 indoors and evusheld every 6 mos, have had covid twice in just a few months and both rounds were moderate/serious with very high fevers for a while. Both bouts resulted in weight loss and the second round came too soon to have gained back all the weight lost in round 1.
Increase Social health? It is hard to engage socially when you are either sick with covid or all social engagements are indoors unmasked and you cannot get adequate covid protection. I can report wearing an n95 at a cocktail party is more isolating than staying home.
Even if you took your mask off any social gains would be destroyed by the resulting repeat infections, constant quarantine, weight loss and inability to exercise.
Before asking pwMS to follow this advice health professionals must help us solve for a way out of this impossible sophie’s choice.
Thank you for this discussion. It covers quite a lot of ground. The most I can do is keep standing up as much as possible, and I believe I’ve mentioned this, forcing myself to continue reading and otherwise challenging my brain. I often do feel lonely from the standpoint that I’ve lived a long while with this disease, and I definitely know who my true friends are!
I love the idea of HITT. Walking/swimming in the pool and just walking get tedious. Re swimming, I find I can’t dunk my head without balance panic. Vertigo can be triggered fairly easily and quickly especially with head turning.
Unfortunately, we don’t have physiotherapists here in the states where I am. We have physical therapists who know nothing about p/MS. These people don’t understand that their usual protocols will exacerbate tremor so badly, it isn’t worth it. So I’m wondering if HITT can be modified, and has anyone undertaken that?
The other issue is sleep. Let’s just say it’s dreadful, which is why I try to stay as active as possible during the day and take a short nap after meditation in mid afternoon. Alas, the only thing available for sleeping is cannabis, which I personally hate. I feel like I have a hangover the next day. Yes, Prof G, I too would rather have good wine! But not a hangover. :) It’s amazing how differently our bodies process medications.
Many thanks for this Prof G. Do you think it is worthwhile taking alpha lipoic acid and/or propionic acid? Do you think there is any downsides to taking them?
For those of us on HRT, should we get ourselves onto a high dose of oestrogen even if the standard dose controls menopausal symptoms, just thinking about risk/potential benefit.