Just to add - I find the general medical/health information you share very helpful. It's never clutter and it helps me and the people around me. It's important for us and our carers and dependents to stay as well as we can to make life easier all round
I do but I do it because my BP is low and I feel faint a lot of the time. I don't know how to get it higher. I wonder whether it contributes to my fatigue or if it is actually a symptom of my MS fatigue as it gets very low when I am exhausted. I'd be interested to know if there is any evidence that MS can cause impaired regulation of autonomic functions.
And me! I bought a blood pressure monitor for this very reason, but doesn't seem to be much correlation with fatigue. My blood pressure normally drops due to dehydration, and this does cause tiredness, but not always correlated to MS fatigue.
Useful (as ever)! I finally accepted I couldn’t continue with my stressful management consultancy role last year and stopped work. This wasn’t a comfortable decision, accepting stress and it’s role in my cognitive decline were real and I couldn’t ignore them any longer. I had a relapse in March 24, first after lemtrada in 2017/18. But now I have time to think about being more healthy - addressing my weight by paying for Mounjaro (which also helps regulate blood sugar levels) and I’ve lost nearly 2 stone since November. I’m on Kesimpta now as the cervical spine MRI didn’t show lesions, but neuro and I are convinced it was a real relapse that still gives me weird sensations on my right foot and pain on right side. So sad my GP couldn’t prescribe mounjaro on the NHS given I don’t have full diabetes. He was sympathetic to my MS co morbities but had prescribing rules. I am able to go to the gym more and do what I can given my impossible coordination and I already feel better for reducing my stress and losing weight. I am on blood pressure reducing medication so this article has reminded me to check my blood pressure more regularly at home. I took a while to realise that excess weight was a co morbidity .
The NHS nurse suggested I monitor my blood pressure last July, because it was "always slightly high" in clinic. I blame the car park as I had struggled to find a parking space before both MS nurse appointments, but not before Cardiology the previous week when it was considered to be fine. The clinic is also upstairs, and they pounce on you as soon as you arrive. The MS nurse did not explain how to measure it. I read the leaflet that came with my machine, and also based it on what they do at the hospital and GP. I knew most of what is in the poster, but not to take 3 readings a minute apart or to measure it twice a day. I've been fitting it in at random times around eating and doing things. I also didn't know about palm up and am generally watching the telly. Clearly room for improvement! I had wondered how long to sit in the position before measuring.
My not so correct technique measurements last July to September suggested it was sometimes low with Systolic varying from 111 to 131 and diastolic varying from 68 to 87. The average readings being a near perfect 123 and 77. Since starting Siponimod it is higher with readings between 119 and 141 Systolic and 72 and 89 Diastolic. I've been recording the readings in a spreadsheet but only keeping the max, min and average readings for each month other than the current one.
Does it matter which arm? and is it better to take it for a week, not every day? If so, how often would you repeat the monitoring week? I do have hypercholesterolemia / hyperlipidemia (I don't understand the difference) but I have resisted a Statin and been able to reduce my cholesterol by dietary change. I also lost 4 stone, a quarter of my body weight. Is there a preferred statin for MS?
There isn't a preferred statin, and the ideal choice depends on individual factors like cholesterol levels, other health conditions, and tolerance to medications. However, atorvastatin and rosuvastatin are often considered the most potent statins and are frequently recommended for patients with high cardiovascular risk.
Pravastatin does not cross the blood-brain barrier so some people who develop cognitive symptoms on a statin are better off taking pravastatin. I think simvastatin is the cheapest and is often preferred for that reason.
Hyperlipidemia is a broad term referring to elevated levels of lipids (fats) in the blood, including cholesterol and triglycerides. Hypercholesterolemia focuses on high LDL (bad) cholesterol and/or total cholesterol levels.
I was a smoker who quit +8 yrs post dx, but I did not have any relation your list of comorbidities except for the smoking itself. Also, no high cholesterol or high levels of other fats, and no vascular damage or disease. I was always thin, and my bp has always been around 120/72 or lower. I have to monitor my blood pressure now because I take a beta blocker for an errant arrhythmia brought on by the MS nerve damage: it happens when my spine is inflamed from a systemic infection, or when I am constipated or can't urinate (autonomic dysreflexia). I still have arguments with my neurologist about this, even though I have found plenty of evidence to back it up, and my cardiologist can't point to any specific cause.
I try to use my stupidity as an example to others how dangerous and damaging smoking is--and it's not just the risk of cancer, which is bad enough. Now there's vaping, which aerosolizes the chemicals into nanoparticles that travel even deeper into the lungs, and end up lingering longer and building up. I know that I would not be as disabled as I am, and mostly bed bound, if I had quit smoking earlier, or never had ever started at 18 yo. I also believe--albeit maybe somewhat mistakenly--that I never would have developed MS if I had never started smoking, period.
We think that if the population stopped smoking, i.e. no new adolescents or young adults started smoking it would reduce the incidence (new cases) of MS by 10-15%.
Maybe you wouldn't have, maybe you would have (developed MS). Everyone wants to know why THEY got MS? The majority of people with MS don't and didn't smoke (I think I can safely say that). Being a non-smoker did nothing for them, they may think. But if someone learns that a person with MS was a smoker, well, there's your cause. My female cousin has MS. Never smoked, never drank, unlike me. About the same MS outcome her and I. I'd say don't be too hard on yourself, the amount of variables contributing to this are indeed beyond our control. But do try to live healthy, why not? Best to you, Mr. Torri.
I appreciate what you're saying, but I was just putting forth something that I go round and round about. I am hard on myself because I am the one with the most influence on me, and I want the force of my having been purposely oblivious (stupidity as opposed to ignorance) to influence other people how detrimental and unnecessarily risky smoking is. Even though I'm far from perfect, I try not to fall victim to confirmation bias. And yes, healthy is the best policy.
This wasn't very useful to me personally, because my blood pressure has always been on the low side of normal and I don't have vascular issues, but I don't find them clutter.
But now I know another good reason to keep an eye on that.
Is the time to EDSS 6 graph based on no medication? It is dated 2010. Have outcomes improved for 2025? Do the medics now have sufficient data for a graph like this on, say, Ocrevus (because it’s been around quite a while I understand)?
When I asked my neurologist about average outcomes she said all such graphs were based on no medications so we really couldn’t say and the DMTs were really working well - burble burble.
Every email you send doctor is very very helpful. I look forward to them! Just to say I was worried about my vascular situation because I have low blood pressure. Im taking a low dose aspirin and that seems to be helping a lot.
Thanks for this information Professor. Is there a chance that MS symptoms can improve if these are addressed?
My cholesterol was 4.3 for years, then crept up to 4.9 and has been over 5 for a couple of years now. And that coincides with my deteriorating health. And balance. Both LDL and HDL are high.
My HbA1c is not in the prediabetic range but is on an upward trend. Of course the GP marks this as normal.
I don't eat much red meat - mostly cook from scratch. I have very little sugar, no white bread. Lots of legumes, veg, salads, nuts. No fizzy drinks or alcohol. I exercise - just getting back to swimming. BP is on the low side but also I am probably guilty of not drinking enough water (bladder issues - the vicious circle).
My step count has dropped since I have had mobility problems.
I am not overweight. I do have anxiety and depression. And trigeminal neuralgia.
Should I be taking metformin or a statin? Or both?
I am low on the Q-risk but I also think it a bit primitive - sorry!
I have toyed with the idea of metformin. The issue is how I can get it prescribed, if I can accept the potential side effects. I do need to research this a little more.
I applied to the Octopus trial but as I already take ALA I suspect I might not be a suitable candidate
Also the cholesterol levels the NHS would like us to achieve seem unattainable. Cholesterol less than 4, LDL less than 2 and HDL more than 1.3. My best since 2018, not simultaneously, is Cholesterol 5.8, LDL 3.6, HDL 1.3 Triglycerides 1.6. Much better than where I started with Cholesterol 9.1 and triglycerides of 6.2!
In my case, the discussion goes your Q risk is 11 to 15%, or whatever, have a Statin. At this point I recalculate it using the NHS online calculator and remove type 2 diabetes because the diabetic nurse told me I had resolved my diabetes by dietary change so I didn't need all the diabetes tests like retinopathy etc and just need to have my HbA1C measured annually. It's been below 41 since August 2020. This reduces my Q risk to around 8% because I take Quetiapine and 6% without Quetiapine. The Quetiapine is not for Psychosis it was prescribed to enhance / increase the effect of my antidepressants Mirtazapine and Venlafaxine. I was on 200mg when I was very poorly but am now on 75mg with a view to discontinue it. Let's celebrate my success not prescribe a Statin to counteract Quetiapine and now non existent diabetes!
A wrist blood pressure monitor is okay as a screen. HCPs usually recommend upper arm monitors because they’re more reliable. However, wrist monitors are appropriate alternatives when upper arm monitors don’t fit well or cause pain.
Thank you for the feedback. We will start doing it once a week. We are both doing okay with our blood pressure but I know it’s important to keep on top of it. Thanks again!
I always find these posts interesting and helpful. Please don't stop posting, I don't find it clogging up my email at all!
Just to add - I find the general medical/health information you share very helpful. It's never clutter and it helps me and the people around me. It's important for us and our carers and dependents to stay as well as we can to make life easier all round
I do but I do it because my BP is low and I feel faint a lot of the time. I don't know how to get it higher. I wonder whether it contributes to my fatigue or if it is actually a symptom of my MS fatigue as it gets very low when I am exhausted. I'd be interested to know if there is any evidence that MS can cause impaired regulation of autonomic functions.
MS can affect autonomic function, but it tends to be in people with advanced MS.
How can one determine if MS is affecting autonomic function? without being considered "advanced".
Same issue for me, but no dr is interested in exploring low blood pressure…
Me too. And my resting pulse is generally 52. Sometimes a little lower.
Here same
Frustrating isn't it. I'd like to know why in case there's something underlying that needs addressing.
And me! I bought a blood pressure monitor for this very reason, but doesn't seem to be much correlation with fatigue. My blood pressure normally drops due to dehydration, and this does cause tiredness, but not always correlated to MS fatigue.
In fact sometimes I feel fine despite low blood pressure. It does mean I feel happy to put lots of salt on my food though!
Useful (as ever)! I finally accepted I couldn’t continue with my stressful management consultancy role last year and stopped work. This wasn’t a comfortable decision, accepting stress and it’s role in my cognitive decline were real and I couldn’t ignore them any longer. I had a relapse in March 24, first after lemtrada in 2017/18. But now I have time to think about being more healthy - addressing my weight by paying for Mounjaro (which also helps regulate blood sugar levels) and I’ve lost nearly 2 stone since November. I’m on Kesimpta now as the cervical spine MRI didn’t show lesions, but neuro and I are convinced it was a real relapse that still gives me weird sensations on my right foot and pain on right side. So sad my GP couldn’t prescribe mounjaro on the NHS given I don’t have full diabetes. He was sympathetic to my MS co morbities but had prescribing rules. I am able to go to the gym more and do what I can given my impossible coordination and I already feel better for reducing my stress and losing weight. I am on blood pressure reducing medication so this article has reminded me to check my blood pressure more regularly at home. I took a while to realise that excess weight was a co morbidity .
The NHS nurse suggested I monitor my blood pressure last July, because it was "always slightly high" in clinic. I blame the car park as I had struggled to find a parking space before both MS nurse appointments, but not before Cardiology the previous week when it was considered to be fine. The clinic is also upstairs, and they pounce on you as soon as you arrive. The MS nurse did not explain how to measure it. I read the leaflet that came with my machine, and also based it on what they do at the hospital and GP. I knew most of what is in the poster, but not to take 3 readings a minute apart or to measure it twice a day. I've been fitting it in at random times around eating and doing things. I also didn't know about palm up and am generally watching the telly. Clearly room for improvement! I had wondered how long to sit in the position before measuring.
My not so correct technique measurements last July to September suggested it was sometimes low with Systolic varying from 111 to 131 and diastolic varying from 68 to 87. The average readings being a near perfect 123 and 77. Since starting Siponimod it is higher with readings between 119 and 141 Systolic and 72 and 89 Diastolic. I've been recording the readings in a spreadsheet but only keeping the max, min and average readings for each month other than the current one.
Does it matter which arm? and is it better to take it for a week, not every day? If so, how often would you repeat the monitoring week? I do have hypercholesterolemia / hyperlipidemia (I don't understand the difference) but I have resisted a Statin and been able to reduce my cholesterol by dietary change. I also lost 4 stone, a quarter of my body weight. Is there a preferred statin for MS?
Re: "Is there a preferred statin for MS?"
There isn't a preferred statin, and the ideal choice depends on individual factors like cholesterol levels, other health conditions, and tolerance to medications. However, atorvastatin and rosuvastatin are often considered the most potent statins and are frequently recommended for patients with high cardiovascular risk.
Pravastatin does not cross the blood-brain barrier so some people who develop cognitive symptoms on a statin are better off taking pravastatin. I think simvastatin is the cheapest and is often preferred for that reason.
Hyperlipidemia is a broad term referring to elevated levels of lipids (fats) in the blood, including cholesterol and triglycerides. Hypercholesterolemia focuses on high LDL (bad) cholesterol and/or total cholesterol levels.
I was a smoker who quit +8 yrs post dx, but I did not have any relation your list of comorbidities except for the smoking itself. Also, no high cholesterol or high levels of other fats, and no vascular damage or disease. I was always thin, and my bp has always been around 120/72 or lower. I have to monitor my blood pressure now because I take a beta blocker for an errant arrhythmia brought on by the MS nerve damage: it happens when my spine is inflamed from a systemic infection, or when I am constipated or can't urinate (autonomic dysreflexia). I still have arguments with my neurologist about this, even though I have found plenty of evidence to back it up, and my cardiologist can't point to any specific cause.
I try to use my stupidity as an example to others how dangerous and damaging smoking is--and it's not just the risk of cancer, which is bad enough. Now there's vaping, which aerosolizes the chemicals into nanoparticles that travel even deeper into the lungs, and end up lingering longer and building up. I know that I would not be as disabled as I am, and mostly bed bound, if I had quit smoking earlier, or never had ever started at 18 yo. I also believe--albeit maybe somewhat mistakenly--that I never would have developed MS if I had never started smoking, period.
We think that if the population stopped smoking, i.e. no new adolescents or young adults started smoking it would reduce the incidence (new cases) of MS by 10-15%.
Maybe you wouldn't have, maybe you would have (developed MS). Everyone wants to know why THEY got MS? The majority of people with MS don't and didn't smoke (I think I can safely say that). Being a non-smoker did nothing for them, they may think. But if someone learns that a person with MS was a smoker, well, there's your cause. My female cousin has MS. Never smoked, never drank, unlike me. About the same MS outcome her and I. I'd say don't be too hard on yourself, the amount of variables contributing to this are indeed beyond our control. But do try to live healthy, why not? Best to you, Mr. Torri.
I appreciate what you're saying, but I was just putting forth something that I go round and round about. I am hard on myself because I am the one with the most influence on me, and I want the force of my having been purposely oblivious (stupidity as opposed to ignorance) to influence other people how detrimental and unnecessarily risky smoking is. Even though I'm far from perfect, I try not to fall victim to confirmation bias. And yes, healthy is the best policy.
Thank you! A reminder for us to self monitor in-addition to doctor visits.
Always welcome your posts!
This wasn't very useful to me personally, because my blood pressure has always been on the low side of normal and I don't have vascular issues, but I don't find them clutter.
But now I know another good reason to keep an eye on that.
Does a low resting pulse mean lower BP. ? Even when I do seated yoga raising my arms, my pulse only gets to about 64. Usually resting around 52.
No the heart rate and blood pressure are very different metrics.
Thank you
Is the time to EDSS 6 graph based on no medication? It is dated 2010. Have outcomes improved for 2025? Do the medics now have sufficient data for a graph like this on, say, Ocrevus (because it’s been around quite a while I understand)?
When I asked my neurologist about average outcomes she said all such graphs were based on no medications so we really couldn’t say and the DMTs were really working well - burble burble.
Yes, we have new graphs that have shown major improvements over time linked to early treatment and high efficacy DMTs.
Could you share some of those more up to date graphs?
Every email you send doctor is very very helpful. I look forward to them! Just to say I was worried about my vascular situation because I have low blood pressure. Im taking a low dose aspirin and that seems to be helping a lot.
definitely helpful! always so happy to see a Dr G email in my inbox - this one in particular is very important new knowledge for me
Thanks for this information Professor. Is there a chance that MS symptoms can improve if these are addressed?
My cholesterol was 4.3 for years, then crept up to 4.9 and has been over 5 for a couple of years now. And that coincides with my deteriorating health. And balance. Both LDL and HDL are high.
My HbA1c is not in the prediabetic range but is on an upward trend. Of course the GP marks this as normal.
I don't eat much red meat - mostly cook from scratch. I have very little sugar, no white bread. Lots of legumes, veg, salads, nuts. No fizzy drinks or alcohol. I exercise - just getting back to swimming. BP is on the low side but also I am probably guilty of not drinking enough water (bladder issues - the vicious circle).
My step count has dropped since I have had mobility problems.
I am not overweight. I do have anxiety and depression. And trigeminal neuralgia.
Should I be taking metformin or a statin? Or both?
GPs use the Q-risk calculator, and if your Q-risk of a stroke or myocardial infarction is greater than 10%, they start a statin.
https://qrisk.org/index.php
Since you don't have diabetes, there is no indication for metformin. However, many biohackers take metformin as part of their anti-ageing protocols.
See: https://gavingiovannoni.substack.com/p/q-and-a-35-metformin?utm_source=publication-search
Thank you for your reply Professor.
I am low on the Q-risk but I also think it a bit primitive - sorry!
I have toyed with the idea of metformin. The issue is how I can get it prescribed, if I can accept the potential side effects. I do need to research this a little more.
I applied to the Octopus trial but as I already take ALA I suspect I might not be a suitable candidate
Also the cholesterol levels the NHS would like us to achieve seem unattainable. Cholesterol less than 4, LDL less than 2 and HDL more than 1.3. My best since 2018, not simultaneously, is Cholesterol 5.8, LDL 3.6, HDL 1.3 Triglycerides 1.6. Much better than where I started with Cholesterol 9.1 and triglycerides of 6.2!
GPs use the Q-risk calculator, and if your Q-risk of a stroke or myocardial infarction is greater than 10%, they start a statin.
https://qrisk.org/index.php
Since you don't have diabetes, there is no indication for metformin. However, many biohackers take metformin as part of their anti-ageing protocols.
See: https://gavingiovannoni.substack.com/p/q-and-a-35-metformin?utm_source=publication-search
In my case, the discussion goes your Q risk is 11 to 15%, or whatever, have a Statin. At this point I recalculate it using the NHS online calculator and remove type 2 diabetes because the diabetic nurse told me I had resolved my diabetes by dietary change so I didn't need all the diabetes tests like retinopathy etc and just need to have my HbA1C measured annually. It's been below 41 since August 2020. This reduces my Q risk to around 8% because I take Quetiapine and 6% without Quetiapine. The Quetiapine is not for Psychosis it was prescribed to enhance / increase the effect of my antidepressants Mirtazapine and Venlafaxine. I was on 200mg when I was very poorly but am now on 75mg with a view to discontinue it. Let's celebrate my success not prescribe a Statin to counteract Quetiapine and now non existent diabetes!
I tried it at 8.30pm GMT.
3 very repeatable and acceptable readings:
Systolic Diastolic Pulse
124 79 71
122 81 71
123 82 72
The 5 minute wait seems a long time!
We do monitor blood pressure at home, although not regularly. Our monitor fits onto the wrist. Can this style be used effectively?
A wrist blood pressure monitor is okay as a screen. HCPs usually recommend upper arm monitors because they’re more reliable. However, wrist monitors are appropriate alternatives when upper arm monitors don’t fit well or cause pain.
Thank you for the feedback. We will start doing it once a week. We are both doing okay with our blood pressure but I know it’s important to keep on top of it. Thanks again!