A core strategy is adopting a brain-healthy lifestyle to prevent or aggressively treat comorbidities that affect brain health. What surprises me is how few MS (pwMS) people take this on board.
This is a very good and important concept you present here, for those of us with MS and literally everyone whose hearts and brains are still working. Maximizing one's health can only be good. Well, with the caveat that regardless of our efforts, accumulation of disability with progressive MS (and age in general) is inevitable, and therefore the desire to live with that degree of disability. I have a low bmi, good BP etc, but frankly, I often wish that I didn't.
As Hamlet said "...there's the respect that makes calamity of so long life".
I agree with your position. I’ve never smoked, never drunk alcohol, never taken a recreational drug and I ran 10km twice a week. In 2002 (age 37) the doctor at my annual office health check told me I was in excellent health (excellent BP, low cholesterol….) - 2 years later I’m diagnosed with RRMS. I’ve kept up my healthy lifestyle and my blood tests / BP are all good, but my 87 year old father can walk faster and for longer than me. My healthy life style doesn’t do anything for the smouldering MS. I’d rather depart this world with a fatal heart attack than end up in an electric wheelchair in a nappy / a care home - a reward for keeping up a healthy lifestyle. If the medics could keep their side of the bargain (stop smouldering MS) then MSers would have an incentive to strive for a healthy lifestyle. Best of luck.
A family member of mine died of a stroke. Never knew what hit him. And he was active until the day he died. I wish I died like that, and I don't really care if it's 'too soon'. But brain healthy lifestyle not only prolongs life, it should also prolong QoL/slow down deterioration. So, what's preferable...?
I'm not surprised if few PwMS take brain-healthy lifestyle into account, especially once deterioration has set in. At that point, what is your motivation? In my view, there's a huge difference between working hard to get better, and working hard to get worse a little slower.
“In my view, there's a huge difference between working hard to get better, and working hard to get worse a little slower.” Totally agree. A friend had a pretty bad stroke which affected his right side. His neuro was excellent - got him on meds to prevent another stroke, told him to lose weight, stop drinking so much and referred him to a specialist physical therapist. Also told him that the first six months were crucial to get as much back as possible. My friend took all the advice and support and reaped the rewards. He’s c.80-90% back to pre stroke. MS research seems happy with a goal of slowing down increasing disability! Just prolongs the nightmare.
I was much like you. Diagnosed 2001. Extremely fit. Still have excellent BP etc but compared to my 89 year old mother who has always drunk a fair amount of booze and smoked a lot until her 40s and has arthritic knees, she is still faster and more energetic. I agree, about longevity, who wants that if your relationship is damaged from MS and you are dependent on others for basic care. I’d rather die. I always said when incontinence hits I’m done. It has to some degree but I’m managing it not other people.
I find it embarrassing when I visit my parents (85 and 88 this year) and my mum calls out ‘watch the step’ as she knows my balance is iffy. She works at a charity shop one day a week - standing for seven hours. My father in law smoked for 40 years (until his late 50s). Took up golf at 70 and died (short illness) at 87. I take a lot on the healthy living stuff with a pinch of salt. Don’t get a neurological disease is the best advice. Best wishes.
Exactly. I wanted to die like my Dad even before MS came along. Go to bed New Year's eve and don't get up on New Year's day. He had seen all of his family over Christmas. I definitely don't want to die like my ex father in law, on morphine for the pain, in a hospice after a battle with bladder cancer , radiotherapy etc. The issue is, that the heart attack or stroke may not kill you, it might just make your quality of life even worse. Then there is dementia like my Mum. Watching her from the outside it was not what I want, but she never seemed unhappy. I know that is not always the case but she could laugh right to the end.
I really appreciate the holistic approach that you are offering. While I don’t live in the UK, anything that provides an objective value to brain heath is of interest to me. My hope is that I can minimise further deterioration until the next treatment is available. Additionally, those that I care about benefit from this approach. Thank you for your work!
I like the information on holistic MS management; it's more directly valuable to me than a lot of the more specific MS stuff, because I'm really lucky.
I do know my Q risk score. In my case the conversation goes something like this. The GP tells me my Q risk score is 11% I let them take blood just after Christmas and it was 15% but I'm sure it wil return to around 11% now I am back on my normal diet. Then I remove Type 2 diabetes from the calculation because I've had normal HbA1c for 5 years. The diabetic nurse was very excited by this and told me I had resolved my diabetes by totally revamping my diet and exercise regimes. They decided I no longer needed any specialist diabetes tests and would simply monitor my HbA1c annually. This reduces my Qrisk score dramatically, to much less than 10% I also remove the atypical psychotic, Quetiapine. It was prescribed to augment the effects of the antidepressants Mirtazapine and Venlafaxine. It's great for anxiety. I consider it to be as good as Diazepam but without the issues of tolerance and addiction. I've been well for a couple of years and have reduced the Quetiapine from 200mg a day to 75mg and intend to stop it completely.
My most recent calculations are as follows:
The GP 15.14%
Online calculator:
With Quietiapine: 16.7%
Then I consider what a Statin might achieve:
75% of my cholesterol level: 12.1%
50% of my cholesterol level: 9.7%
Then I reset everything else.
No diabetes: 8%
Without the Quetiapine: 9.5%
75% of my cholesterol level: 9.5%
50% of my cholesterol level: 7.7%
Then I reset everything else.
No diabetes: 6.3%
Sometimes I refuse a Statin or Ezetimibe several times in 3 weeks due to other appointments like a meds review. I don't want to be medicated with another drug when the biggest improvement is gained by stopping my Quetiapine and continuing to control my diabetes by diet.
Thanks for this. Well-people clinics are not cost-effective, which may explain why Wales has not adopted them. In England, they tend to be done by nursing assistants and not nurses or doctors, and I think they are useful in identifying problems early.
I had one by an assistant who measured me at 5 ft 10. That was 3 years ago. I was 5,8 at my tallest. Never 5.10. I’m now 5.7 just. Shrinking slowly. There must be accuracy to get advice right.
you can do what I do: 1) Assume that you are at risk 2) don't get overly stressed by this assumption 3) take necessary lifestyle (non-pharmaceutical) measures to improve your score:
1) If you are wrong (you were low risk) => that's OK, you win twice.
2) If you are right (you are border line) => your GP will likely start with lowering blood pressure with diet and exercise before starting you on statins so same-same.
3) If you are wrong (you were high risk): Measuring blood pressure at home and buying a cholesterol prick test from amazon for 5 quid can reduce this risk.
To summarise, testing is ex post. Lifestyle changes are ex ante.
Ah is it 50 now? A boyfriend had his at 40 and I've been waiting to be called for mine ever since I turned 40 (so a few years now!). The NHS website says they start at 40 too but I'm sure you're right about it being 50 now.
I have taken part in the Our Future Health study so I already know my numbers are all good.
I’m surprised the risk criteria, at least for males, doesn’t include waist measurement as this I understand is now considered to be a better indicator than BMI.
I was smoking and had a poor convenience style diet when I was diagnosed 1.5years ago. My neurologist said my MS would progress 50% faster if I didn’t change. I gave the smokes up using Quitline and switched to her recommended Mediterranean diet. I lost 10kg I didn’t need. It wasn’t hard as not ending up in a more disabled is good motivation! My Q score is now 1.4%
I have a 2.1 % risk of a heart attack in the next 10 years. I don't need anyone to nudge me on healthy living. I enjoy life and say everything in moderation. Happy Easter. Xx
Thanks for this, but I could not total it. My BMI is 14.8 post Covid. Why I am unable to gain weight is a frightening mystery at present and will require a real diagnostician. (Good luck to me here in my little area in the states.) This appears to be a blood issue, although I suspect that my smouldering MS isn’t helping me any!
This is a very good and important concept you present here, for those of us with MS and literally everyone whose hearts and brains are still working. Maximizing one's health can only be good. Well, with the caveat that regardless of our efforts, accumulation of disability with progressive MS (and age in general) is inevitable, and therefore the desire to live with that degree of disability. I have a low bmi, good BP etc, but frankly, I often wish that I didn't.
As Hamlet said "...there's the respect that makes calamity of so long life".
Zev,
I agree with your position. I’ve never smoked, never drunk alcohol, never taken a recreational drug and I ran 10km twice a week. In 2002 (age 37) the doctor at my annual office health check told me I was in excellent health (excellent BP, low cholesterol….) - 2 years later I’m diagnosed with RRMS. I’ve kept up my healthy lifestyle and my blood tests / BP are all good, but my 87 year old father can walk faster and for longer than me. My healthy life style doesn’t do anything for the smouldering MS. I’d rather depart this world with a fatal heart attack than end up in an electric wheelchair in a nappy / a care home - a reward for keeping up a healthy lifestyle. If the medics could keep their side of the bargain (stop smouldering MS) then MSers would have an incentive to strive for a healthy lifestyle. Best of luck.
A family member of mine died of a stroke. Never knew what hit him. And he was active until the day he died. I wish I died like that, and I don't really care if it's 'too soon'. But brain healthy lifestyle not only prolongs life, it should also prolong QoL/slow down deterioration. So, what's preferable...?
I'm not surprised if few PwMS take brain-healthy lifestyle into account, especially once deterioration has set in. At that point, what is your motivation? In my view, there's a huge difference between working hard to get better, and working hard to get worse a little slower.
“In my view, there's a huge difference between working hard to get better, and working hard to get worse a little slower.” Totally agree. A friend had a pretty bad stroke which affected his right side. His neuro was excellent - got him on meds to prevent another stroke, told him to lose weight, stop drinking so much and referred him to a specialist physical therapist. Also told him that the first six months were crucial to get as much back as possible. My friend took all the advice and support and reaped the rewards. He’s c.80-90% back to pre stroke. MS research seems happy with a goal of slowing down increasing disability! Just prolongs the nightmare.
I was much like you. Diagnosed 2001. Extremely fit. Still have excellent BP etc but compared to my 89 year old mother who has always drunk a fair amount of booze and smoked a lot until her 40s and has arthritic knees, she is still faster and more energetic. I agree, about longevity, who wants that if your relationship is damaged from MS and you are dependent on others for basic care. I’d rather die. I always said when incontinence hits I’m done. It has to some degree but I’m managing it not other people.
I find it embarrassing when I visit my parents (85 and 88 this year) and my mum calls out ‘watch the step’ as she knows my balance is iffy. She works at a charity shop one day a week - standing for seven hours. My father in law smoked for 40 years (until his late 50s). Took up golf at 70 and died (short illness) at 87. I take a lot on the healthy living stuff with a pinch of salt. Don’t get a neurological disease is the best advice. Best wishes.
Frustrating hey. 😕
Yes, the smoldering MS…
EXACTLY
Exactly. I wanted to die like my Dad even before MS came along. Go to bed New Year's eve and don't get up on New Year's day. He had seen all of his family over Christmas. I definitely don't want to die like my ex father in law, on morphine for the pain, in a hospice after a battle with bladder cancer , radiotherapy etc. The issue is, that the heart attack or stroke may not kill you, it might just make your quality of life even worse. Then there is dementia like my Mum. Watching her from the outside it was not what I want, but she never seemed unhappy. I know that is not always the case but she could laugh right to the end.
I really appreciate the holistic approach that you are offering. While I don’t live in the UK, anything that provides an objective value to brain heath is of interest to me. My hope is that I can minimise further deterioration until the next treatment is available. Additionally, those that I care about benefit from this approach. Thank you for your work!
I like the information on holistic MS management; it's more directly valuable to me than a lot of the more specific MS stuff, because I'm really lucky.
I do know my Q risk score. In my case the conversation goes something like this. The GP tells me my Q risk score is 11% I let them take blood just after Christmas and it was 15% but I'm sure it wil return to around 11% now I am back on my normal diet. Then I remove Type 2 diabetes from the calculation because I've had normal HbA1c for 5 years. The diabetic nurse was very excited by this and told me I had resolved my diabetes by totally revamping my diet and exercise regimes. They decided I no longer needed any specialist diabetes tests and would simply monitor my HbA1c annually. This reduces my Qrisk score dramatically, to much less than 10% I also remove the atypical psychotic, Quetiapine. It was prescribed to augment the effects of the antidepressants Mirtazapine and Venlafaxine. It's great for anxiety. I consider it to be as good as Diazepam but without the issues of tolerance and addiction. I've been well for a couple of years and have reduced the Quetiapine from 200mg a day to 75mg and intend to stop it completely.
My most recent calculations are as follows:
The GP 15.14%
Online calculator:
With Quietiapine: 16.7%
Then I consider what a Statin might achieve:
75% of my cholesterol level: 12.1%
50% of my cholesterol level: 9.7%
Then I reset everything else.
No diabetes: 8%
Without the Quetiapine: 9.5%
75% of my cholesterol level: 9.5%
50% of my cholesterol level: 7.7%
Then I reset everything else.
No diabetes: 6.3%
Sometimes I refuse a Statin or Ezetimibe several times in 3 weeks due to other appointments like a meds review. I don't want to be medicated with another drug when the biggest improvement is gained by stopping my Quetiapine and continuing to control my diabetes by diet.
https://www.sciencealert.com/researchers-identify-new-blood-group-after-50-year-mystery?fbclid=IwY2xjawJsOidleHRuA2FlbQIxMQABHms1jzQBvufvqhFkh3izTWHp1n8BQcGp-IQFj2OER3EvtYfHExBpmzhlAPkX_aem_lel0YeGCapF8kUKEv1jpNA
...myelin ?
How does migraine increase cardiac risk?
Please see the following report from Gemini Advanced Deep Research Pro 2.5
https://docs.google.com/document/d/1lf8evz4rgjJDnd0Ba5RY3MiJk6HaAVCR_FUwnNB8xDo/edit?usp=sharing
Unbelievable.
You may not know, but this only happens in England. Does not happen in Wales. Not sure about real if UK.
Thanks for this. Well-people clinics are not cost-effective, which may explain why Wales has not adopted them. In England, they tend to be done by nursing assistants and not nurses or doctors, and I think they are useful in identifying problems early.
I had one by an assistant who measured me at 5 ft 10. That was 3 years ago. I was 5,8 at my tallest. Never 5.10. I’m now 5.7 just. Shrinking slowly. There must be accuracy to get advice right.
you can do what I do: 1) Assume that you are at risk 2) don't get overly stressed by this assumption 3) take necessary lifestyle (non-pharmaceutical) measures to improve your score:
1) If you are wrong (you were low risk) => that's OK, you win twice.
2) If you are right (you are border line) => your GP will likely start with lowering blood pressure with diet and exercise before starting you on statins so same-same.
3) If you are wrong (you were high risk): Measuring blood pressure at home and buying a cholesterol prick test from amazon for 5 quid can reduce this risk.
To summarise, testing is ex post. Lifestyle changes are ex ante.
Ah is it 50 now? A boyfriend had his at 40 and I've been waiting to be called for mine ever since I turned 40 (so a few years now!). The NHS website says they start at 40 too but I'm sure you're right about it being 50 now.
I have taken part in the Our Future Health study so I already know my numbers are all good.
No, you are right. It was 50 and was reduced to 40. I had my first visit at age 50 and was found to have a raised cholesterol.
In practice it may still be 50 in most places!
Your 10-year QRISK®3 score 0.3%
The score of a healthy person with the same age, sex, and ethnicity* 0.3%
Relative risk 0.9
Your QRISK®3 Healthy Heart Age 32
Wow, it's not that bad. Although my cholesterol level was higher than recomended (5.46) according to my latest blood test.
31 yrs old, male
I’m surprised the risk criteria, at least for males, doesn’t include waist measurement as this I understand is now considered to be a better indicator than BMI.
It is based on data collected many years ago. I suspect it will be changed to include the waist-to-hip ratio sometime in the future.
I was smoking and had a poor convenience style diet when I was diagnosed 1.5years ago. My neurologist said my MS would progress 50% faster if I didn’t change. I gave the smokes up using Quitline and switched to her recommended Mediterranean diet. I lost 10kg I didn’t need. It wasn’t hard as not ending up in a more disabled is good motivation! My Q score is now 1.4%
I have a 2.1 % risk of a heart attack in the next 10 years. I don't need anyone to nudge me on healthy living. I enjoy life and say everything in moderation. Happy Easter. Xx
Thanks for this, but I could not total it. My BMI is 14.8 post Covid. Why I am unable to gain weight is a frightening mystery at present and will require a real diagnostician. (Good luck to me here in my little area in the states.) This appears to be a blood issue, although I suspect that my smouldering MS isn’t helping me any!