The diagnosis of SPMS is a moving target and depends on what system, or systems, MS has affected, how you use that system and how much reserve is left in that system to compensate for the damage.
Q: "I started exercise training at 50, two hour intensive sessions twice or three times weekly for 12 years. Then foot drop and leg muscle weakness became apparent. Can I infer from your post that exercise training used up my reserves?
A: No, it simply exposed you had less reserve, i.e. the fatigue and conduction block associated with a raised body temperature exposes the reduced reserve.
How do we get neuros to read yr newsletter. Hit ms early and hard is key to preventing so much disability. All u wrote is true! Bit some neuros are too stubborn to admit their approach is wrong. How to get yr correct approach into policy of poor performing ms clinics? Blessings, rob
Thank you for your insightful and provocative post, Prof G. The variability in treatment and philosophy between neurologists in regard to treating multiple sclerosis is mind numbingly frustrating. It seems that the biggest issue is that there seems to be no generally agreed-upon definition of what multiple sclerosis is, good ways to explain and mmmmm efine a patient’s prognosis, and which DMTs should or would be used at a specific stage for specific reasons for an expected outcome. It would be great to have more cohesion and general agreement in a universal concept of MS pathobiology and its treatment. Right now it’s all over the place, and very difficult and overwhelming for patients to understand well enough to make the most informed choices to curate their disease to the desired result. Instead it’s more an exercise in taking a gamble that the DMT—or refusal of any—turns out to be the best course of action and not have been the wrong choice, as time is brain.
Could it also be possible that the disease is one of problems at the molecular level, and that multiple systems affecting each other (I.e. gastrointestinal microbiome affecting the brain)? And repair systems breaking down because molecular machinery is corrupted, like the large scale mitochondrial dysfunction?1
I think in terms of causation MS is one disease; #EBVcausesMS.
However, the mechanisms underlying smouldering MS a probably variable with one dominating in a subgroup of pwMS and another in another subgroup. This is why some pwMS are temperature and fatigue sensitive and others are not.
Thank you Dr. Giovanni! Can one reverse reserve deficit damage? Dr. Dale Bredsen outlines a brain health protocol in this book to reverse Alzheimer's. I think its a good protocol for PWMS.
Some of us confront MS in a holistic, anti- smouldering way: Nutrition, exercise, sleep, cognitive hormesis, prayer-meditation, community. You highlighted exercise and BDNF last week, how about the potentiation of fasting?
You mention how some neurologists move patients back to relapsing-remitting in order to prescribe medication but I wanted to share my overwhelming frustration about my own personal situation.
Wheelchair bound with faltering hands but no other problems and I am acknowledged by everyone as having a quick and hugely active brain with no evident cognitive issues at all however according to blueteq only legs are worth worrying about so no drugs for me !!
Even the chariot trial is letting people like me down choosing only to focus on hand capabilities.
With the ability to walk but a faltering mind I would receive potential helpful drugs even though I may not have the ability to appreciate this but instead being unable to walk but understanding everything stacked against me I am denied drugs and I'm left all too aware of the potential repercussions.
Mar 23, 2022·edited Mar 23, 2022Liked by Gavin Giovannoni
Thanks Prof G for your newsletter and podcast. In terms of the case, would the patient be accelerating progression in the motor pathway by distance running?
We have no evidence for this in MS. My guess would be no. In the general population exercise is anti-ageing and neuroprotective and this may apply to MS as well.
I think 'Smoldering MS' is a much better explanation than PIRA. From someone who has no relapses, feels generally OK, and is DMT-free, I do wonder what is in store on my MS journey. I take each day as it comes.
This newsletter has been incredibly insightful and supportive to all MSers. Thanks for all that you do.
When you vaccinate a lot of people (almost the whole population) these sorts of cases will happen by chance. A recent publication from the UK showed the rate of neurological complications were no higher than the rate prior to COVID-19. In comparison the rate of Guillain-Barre syndrome was higher after COVID-19, but not after COVID-19 vaccination.
Wow! This newsletter resonates with me as my path is so similar to your Marathon-running patient's. As ever, you have a knack of opening up the debates based on real-world situations!
I had singular episodes in '03, '08 & '13 brought on by extreme levels of exercise (skiing, football, running). By 2014, running had become unpleasant, so I just did other things! By 2016 in retrospect, my progressive MS began properly and in '22 I'm now EDSS6.0. Having had an MS diagnosis in Feb'21.
For sure, neurological stress testing provides me with a credible explanation as it did for your patient but looking back, were those episodes CIS? A trapped nerve in my back? I've never had a relapse as such. Back in the present, a diagnosis of what happened back then is highly relevant: those episodes could determine if I am SPMS or PPMS (using 2016 as the baseline), could direct my MS Consultant to a diagnosis either way. Ominously, if it is decided the episodes were MS, I could be excluding myself from DMT's based on episodes being >15 years ago.
I wonder how many other of your subscribers and pwMS in the wider world are caught in a similar snare?
As long as SPMS and PPMS make it hard(er) to get medication, I am ok with being labeled RRMS (though I doubt I ever really fit the relapsing criterion and honestly, so did the 2nd opinion doctor).
In an ideal world, things would be different but alas, under the given circumstances it seems like the lesser evil.
Q: "I started exercise training at 50, two hour intensive sessions twice or three times weekly for 12 years. Then foot drop and leg muscle weakness became apparent. Can I infer from your post that exercise training used up my reserves?
A: No, it simply exposed you had less reserve, i.e. the fatigue and conduction block associated with a raised body temperature exposes the reduced reserve.
One of yr best letters.
How do we get neuros to read yr newsletter. Hit ms early and hard is key to preventing so much disability. All u wrote is true! Bit some neuros are too stubborn to admit their approach is wrong. How to get yr correct approach into policy of poor performing ms clinics? Blessings, rob
Thank you for your insightful and provocative post, Prof G. The variability in treatment and philosophy between neurologists in regard to treating multiple sclerosis is mind numbingly frustrating. It seems that the biggest issue is that there seems to be no generally agreed-upon definition of what multiple sclerosis is, good ways to explain and mmmmm efine a patient’s prognosis, and which DMTs should or would be used at a specific stage for specific reasons for an expected outcome. It would be great to have more cohesion and general agreement in a universal concept of MS pathobiology and its treatment. Right now it’s all over the place, and very difficult and overwhelming for patients to understand well enough to make the most informed choices to curate their disease to the desired result. Instead it’s more an exercise in taking a gamble that the DMT—or refusal of any—turns out to be the best course of action and not have been the wrong choice, as time is brain.
Could it also be possible that the disease is one of problems at the molecular level, and that multiple systems affecting each other (I.e. gastrointestinal microbiome affecting the brain)? And repair systems breaking down because molecular machinery is corrupted, like the large scale mitochondrial dysfunction?1
I think in terms of causation MS is one disease; #EBVcausesMS.
However, the mechanisms underlying smouldering MS a probably variable with one dominating in a subgroup of pwMS and another in another subgroup. This is why some pwMS are temperature and fatigue sensitive and others are not.
I’m happy with the term smouldering MS. That is what it deals like in my body.
Thank you for your great posts. I may not like or agree with all your opinions but you always make me think and reevaluate my illness and body.
Thank you Dr. Giovanni! Can one reverse reserve deficit damage? Dr. Dale Bredsen outlines a brain health protocol in this book to reverse Alzheimer's. I think its a good protocol for PWMS.
Some of us confront MS in a holistic, anti- smouldering way: Nutrition, exercise, sleep, cognitive hormesis, prayer-meditation, community. You highlighted exercise and BDNF last week, how about the potentiation of fasting?
https://gavingiovannoni.substack.com/p/which-is-the-best-ms-diet?s=w
You mention how some neurologists move patients back to relapsing-remitting in order to prescribe medication but I wanted to share my overwhelming frustration about my own personal situation.
Wheelchair bound with faltering hands but no other problems and I am acknowledged by everyone as having a quick and hugely active brain with no evident cognitive issues at all however according to blueteq only legs are worth worrying about so no drugs for me !!
Even the chariot trial is letting people like me down choosing only to focus on hand capabilities.
With the ability to walk but a faltering mind I would receive potential helpful drugs even though I may not have the ability to appreciate this but instead being unable to walk but understanding everything stacked against me I am denied drugs and I'm left all too aware of the potential repercussions.
How can this be justified?
Sadly very few trials have allowed patients to participate in who are beyond EDSS 6.5.
Thanks Prof G for your newsletter and podcast. In terms of the case, would the patient be accelerating progression in the motor pathway by distance running?
We have no evidence for this in MS. My guess would be no. In the general population exercise is anti-ageing and neuroprotective and this may apply to MS as well.
I think 'Smoldering MS' is a much better explanation than PIRA. From someone who has no relapses, feels generally OK, and is DMT-free, I do wonder what is in store on my MS journey. I take each day as it comes.
This newsletter has been incredibly insightful and supportive to all MSers. Thanks for all that you do.
Prof. G, do you have any views on this study about mRNA safety for pwMS?
https://pubmed.ncbi.nlm.nih.gov/34480607/
When you vaccinate a lot of people (almost the whole population) these sorts of cases will happen by chance. A recent publication from the UK showed the rate of neurological complications were no higher than the rate prior to COVID-19. In comparison the rate of Guillain-Barre syndrome was higher after COVID-19, but not after COVID-19 vaccination.
So I think this is simply a chance finding.
Thank you very much, Prof. G!
Wow! This newsletter resonates with me as my path is so similar to your Marathon-running patient's. As ever, you have a knack of opening up the debates based on real-world situations!
I had singular episodes in '03, '08 & '13 brought on by extreme levels of exercise (skiing, football, running). By 2014, running had become unpleasant, so I just did other things! By 2016 in retrospect, my progressive MS began properly and in '22 I'm now EDSS6.0. Having had an MS diagnosis in Feb'21.
For sure, neurological stress testing provides me with a credible explanation as it did for your patient but looking back, were those episodes CIS? A trapped nerve in my back? I've never had a relapse as such. Back in the present, a diagnosis of what happened back then is highly relevant: those episodes could determine if I am SPMS or PPMS (using 2016 as the baseline), could direct my MS Consultant to a diagnosis either way. Ominously, if it is decided the episodes were MS, I could be excluding myself from DMT's based on episodes being >15 years ago.
I wonder how many other of your subscribers and pwMS in the wider world are caught in a similar snare?
As long as SPMS and PPMS make it hard(er) to get medication, I am ok with being labeled RRMS (though I doubt I ever really fit the relapsing criterion and honestly, so did the 2nd opinion doctor).
In an ideal world, things would be different but alas, under the given circumstances it seems like the lesser evil.
Yes, by removing visual input you stress your joint position sense pathways and righting reflexes.