This was very well put together. Thank you Dr. Giovannoni for taking the time to help us collectively take a step back to reconsider the way we think. This has an ah-ha feel behind the message. Most MSers know that we share similar stories that could be linked to a possible triggering of our disease. Many of us think it is a viral domino effect. We also are mostly aware that the labels are describing phases (not types) of disease. Those things feel obvious to anyone watching their disease change over time but are somehow not acknowledged by many in the medical field. It is good to hear specialists like yourself talking about our reality with MS without segregating it from our truth of the experience. I mean to say that doctors refuse to acknowledge that progression happens without measurable changes in lesion loading. MSers all over the globe are feeling completely ignored by doctors who deny the truth of their reality. That sort of behavior is toxic and very damaging to the patient’s emotional well-being. This is the kind of progressive thinking the MS community needs... and deserves.
Dr. Giavannoni, as some who was recently diagnosed I wanted to say thank you. So much info packed into this presentation. I don’t think I will ever believe the “faulty immune system” theory that leads to it attacking the CNS, the most important system of human existence. Am excited to see the upcoming studies on anti-viral agents in pwMS. Thank you for sharing with us 🙏🏼
Very nice video professor G. It is interesting that ocrevus may have had some benefit relative to rebif in preventing PIRA (though marginally more effective). One potential problem with your argument from the old interferon data is that the people who had MRI activity despite treatment are people with fundamentally more aggressive multiple sclerosis who are at greater risk of a poor prognosis. The ocrevus data on a dose-dependent effect on disease progression but not on relapses/new MRI lesions is very interesting. However, if ofatumumab is underdosed compared to ocrevus, why is the effect on disability progression so similar. Also, rituximab is less potent than ocrelizumab, but the data on disability progression in the OLYMPUS trial is nearly identical to the data on disability progression from the ORATORIO trial. I hope that you are successful in getting them to do the study so that we can find out.
Dr. Giovannoni. I'm an American who is in Hungary trying to get a good MS diagnosis. Here in Hungary, the neurologists really stick to the common criteria of having lesions in certain places. I have WMLs but not in the common places. I'm 46. Do you or anyone you perhaps know from conferences who share your viewpoints offer MS diagnosis via teleconference? I have access to a 3T scanner here. My only persistent symptoms are 10 years of LUTS (overactive detrusor) and a constant and getting worse tinnitus (past 2 years), along with occasional skin sensory feelings. However, I'd like to stop this as much as I can and so I need to find a good, up to date neurologist. Thank you.
What can we, as pwMS, do to steer our health professionals towards treating this smouldering MS? There's clearly stuff we can do to change our lifestyles - exercise, keto diet, etc. Where can we find disease-appropriate and circumstance-appropriate advice on this? The advice for a fully fit adult will be different from the actions appropriate to someone with MS. Likewise how do we steer doctors, specialists, MS nurses towards taking this stuff seriously and treating it? MS is a war of attrition, not a series of discrete battles with peace in between them. So how do we, as pwMS approach that - and how do we force our carers to take the same approach and treat appropriately?
"clearly stuff we can do to change our lifestyles - exercise, keto diet, etc."...But none of those things work...hsct is really the best thing you can do to fight ms.
This was very well put together. Thank you Dr. Giovannoni for taking the time to help us collectively take a step back to reconsider the way we think. This has an ah-ha feel behind the message. Most MSers know that we share similar stories that could be linked to a possible triggering of our disease. Many of us think it is a viral domino effect. We also are mostly aware that the labels are describing phases (not types) of disease. Those things feel obvious to anyone watching their disease change over time but are somehow not acknowledged by many in the medical field. It is good to hear specialists like yourself talking about our reality with MS without segregating it from our truth of the experience. I mean to say that doctors refuse to acknowledge that progression happens without measurable changes in lesion loading. MSers all over the globe are feeling completely ignored by doctors who deny the truth of their reality. That sort of behavior is toxic and very damaging to the patient’s emotional well-being. This is the kind of progressive thinking the MS community needs... and deserves.
Dr. Giavannoni, as some who was recently diagnosed I wanted to say thank you. So much info packed into this presentation.
I don’t think I will ever believe the “faulty immune system” theory that leads to it attacking the CNS, the most important system of human existence.
Am excited to see the upcoming studies on anti-viral agents in pwMS. Thank you for sharing with us 🙏🏼
Very nice video professor G. It is interesting that ocrevus may have had some benefit relative to rebif in preventing PIRA (though marginally more effective). One potential problem with your argument from the old interferon data is that the people who had MRI activity despite treatment are people with fundamentally more aggressive multiple sclerosis who are at greater risk of a poor prognosis. The ocrevus data on a dose-dependent effect on disease progression but not on relapses/new MRI lesions is very interesting. However, if ofatumumab is underdosed compared to ocrevus, why is the effect on disability progression so similar. Also, rituximab is less potent than ocrelizumab, but the data on disability progression in the OLYMPUS trial is nearly identical to the data on disability progression from the ORATORIO trial. I hope that you are successful in getting them to do the study so that we can find out.
Appreciate, great material, well structured and very helpful
Dr G, any thoughts on EBV and Thymosin. alpha One as a treatment?
Dr. Giovannoni. I'm an American who is in Hungary trying to get a good MS diagnosis. Here in Hungary, the neurologists really stick to the common criteria of having lesions in certain places. I have WMLs but not in the common places. I'm 46.
Do you or anyone you perhaps know from conferences who share your viewpoints offer MS diagnosis via teleconference? I have access to a 3T scanner here.
My only persistent symptoms are 10 years of LUTS (overactive detrusor) and a constant and getting worse tinnitus (past 2 years), along with occasional skin sensory feelings. However, I'd like to stop this as much as I can and so I need to find a good, up to date neurologist. Thank you.
Dr. Boster in Ohio. is very much aligned with everything Dr. Giovannoni just explained in this video. Try reaching out to him.
What can we, as pwMS, do to steer our health professionals towards treating this smouldering MS?
There's clearly stuff we can do to change our lifestyles - exercise, keto diet, etc. Where can we find disease-appropriate and circumstance-appropriate advice on this? The advice for a fully fit adult will be different from the actions appropriate to someone with MS.
Likewise how do we steer doctors, specialists, MS nurses towards taking this stuff seriously and treating it?
MS is a war of attrition, not a series of discrete battles with peace in between them. So how do we, as pwMS approach that - and how do we force our carers to take the same approach and treat appropriately?
"clearly stuff we can do to change our lifestyles - exercise, keto diet, etc."...But none of those things work...hsct is really the best thing you can do to fight ms.
The microglia are responding to microscopic parasites.
thank u sir!
see "scalfari all ms is ppms"