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?
"sometimes its ok to just go out and live the life you would have if you didnt have it". Most of us would agree; I succeeded most of time myself for the first 10 or 20 years. However, some will think, "I no longer can". I think that's the gist- extending the "no longer can" point outwards with some adaptations that you may get used to and not think about. Later, you may not know which adaptation worked, but you'll swear something did.
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.
My last relapse was in 2019 and I practised mindfulness, meditation and mindful eating at that time. I have significantly improved (Cladribine) and life has got very busy now (so much for my progressive neurological condition diagnosis). Good reminder for me to get back into it….
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
Eve, in woman who are 60-62 years the prevalence of an MGUS (monoclonal gammopathy of undetermined significance) is ~2%. This is not due to MS and is a separate problem. It can be a marker of having what is called a plasma cell dyscrasia which is why you have to be investigated for myeloma. I have had several patients with MS over the years with MGUS.
You may find the following article in the New England Journal of Medicine helpful.
Many thanks for your time in replying to me, and for the reference. I have been reading many papers over the last few days, but there are few with the information I am looking for. Take care of yourself. 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?
I enjoy fine wine too much. These studies also ignore the social reasons why people drink and how alcohol has helped create our institutions. I will do a detailed post on this later.
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!
Hello Pat- Here in The US and with the clinicians I've seen, brain volume loss was never assessed other than general observation by the MRI tech. who is not using any special procedure. (That's like 25 yrs of MRIs) Is that regularly being assessed with a standardized method where you are?
Hi Tom, that’s the states’ protocol! I wish I wouldn’t have stopped my DMT when I was told I had NEID and had “plateaued”. Where I am, nothing in the way of care is coordinated either, nor are alternative treatments covered. I don’t think anyone ever spoke of brain volume loss. Ever. Best to you.
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 took nortrityline (similar to amitriptyline) for 3 years and really struggled with urinary retention and then UTIs. Last November I changed to gabapentine and since then I’ve had no urinary retention and no UTI. I think it is worth trying something different to amitriptyline - it was life changing for me! I live in Australia and a pain specialist recommended gabapentine.
Hated gabapentin. I lost all short term memory and gained so much weight which then made everything harder. Pregabelin made me "drunk" I actually got pulled aside picking up my son from nursery.
I’m so sorry to hear this. Finding the right medication can be so difficult. I know about the first thing in the morning feeling of urinary retention and it used to drive me crazy. Could you work with a pain specialist to find an alternative? Don’t give up!
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.
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.
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?
AGREE. I say these things are good for the soul. Sometimes you need to eat the proverbial cake.
"sometimes its ok to just go out and live the life you would have if you didnt have it". Most of us would agree; I succeeded most of time myself for the first 10 or 20 years. However, some will think, "I no longer can". I think that's the gist- extending the "no longer can" point outwards with some adaptations that you may get used to and not think about. Later, you may not know which adaptation worked, but you'll swear something did.
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.
Sounds like you are trying to walk my talk; well done and keep going. Have you tried mindfulness?
My last relapse was in 2019 and I practised mindfulness, meditation and mindful eating at that time. I have significantly improved (Cladribine) and life has got very busy now (so much for my progressive neurological condition diagnosis). Good reminder for me to get back into it….
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
Dare I ask how old you are?
Of course, I am a very young 62. Never had other illnesses, but POTS since covid vaccine.
Eve, in woman who are 60-62 years the prevalence of an MGUS (monoclonal gammopathy of undetermined significance) is ~2%. This is not due to MS and is a separate problem. It can be a marker of having what is called a plasma cell dyscrasia which is why you have to be investigated for myeloma. I have had several patients with MS over the years with MGUS.
You may find the following article in the New England Journal of Medicine helpful.
https://www.nejm.org/doi/full/10.1056/NEJMoa054494
Many thanks for your time in replying to me, and for the reference. I have been reading many papers over the last few days, but there are few with the information I am looking for. Take care of yourself. 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?
I enjoy fine wine too much. These studies also ignore the social reasons why people drink and how alcohol has helped create our institutions. I will do a detailed post on this later.
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!
Hello Pat- Here in The US and with the clinicians I've seen, brain volume loss was never assessed other than general observation by the MRI tech. who is not using any special procedure. (That's like 25 yrs of MRIs) Is that regularly being assessed with a standardized method where you are?
Hi Tom, that’s the states’ protocol! I wish I wouldn’t have stopped my DMT when I was told I had NEID and had “plateaued”. Where I am, nothing in the way of care is coordinated either, nor are alternative treatments covered. I don’t think anyone ever spoke of brain volume loss. Ever. Best to you.
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 took nortrityline (similar to amitriptyline) for 3 years and really struggled with urinary retention and then UTIs. Last November I changed to gabapentine and since then I’ve had no urinary retention and no UTI. I think it is worth trying something different to amitriptyline - it was life changing for me! I live in Australia and a pain specialist recommended gabapentine.
Hated gabapentin. I lost all short term memory and gained so much weight which then made everything harder. Pregabelin made me "drunk" I actually got pulled aside picking up my son from nursery.
I’m so sorry to hear this. Finding the right medication can be so difficult. I know about the first thing in the morning feeling of urinary retention and it used to drive me crazy. Could you work with a pain specialist to find an alternative? Don’t give up!
Hi Karen, Hear hear! I felt like I was wrapped in cotton trying to get out. The stuff gave me screaming migraines to boot.
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.
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.
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.