I think it is worth pointing out that big pharma are not interested in 'cures' per se for any disease given it's bad news for shareholder bottomline/return, instead it's better to provide continuous 'life long' drugs (like Tysabri which I'm on) than provide a 'cure', same for many other illnesses, we mustn't forget big pharma is a 1.4 trillion dollar industry and has a massive ecosystem to support. However having said that I'm extremely grateful for the drugs/care I receive and yes of course I'd love to be cured one day so I can run/hike again but not sure that's going to happen any time soon.
I agree. What I also find interesting in the research is the inconsistent use of "prodrome." A prodrome is an early set of signs or symptoms that indicate the onset of a disease before more typical symptoms develop. Some claim CIS is part of the MS prodrome, some say RIS, and some say both. To your point, if you have lesions, you have MS. I saw a neurologist for five years with symptoms. I had an EEG, VEP, EP, spinal tap, two neuropsych evals, and numerous MRIs. It took almost five years for the MRI to show anything. Once it did, I had a large (almost 4cm) tumefactive MS lesion. I was finally diagnosed at a large MS Center in 2012. Prior to seeing the neurologist, I was diagnosed with PCOS, interstitial cystitis, and microscopic colitis, and visited many other specialists. I was even losing my voice. The neurologist I saw during those five years told me to see an ENT; I found out I have a paralyzed vocal chord! My experience has led me to be involved in research so people do not have to go through what I went through. Thank you for your work!
Hoping and praying that MS is due to a mutant virus, that this virus can be controlled, and that by the disease can be stopped in its tracks by doing so. Basically, I hope that it's never too late for a cure.
Cure must mean a permanent stop to progression (worsening): not stability for five years, or ten years, or fifteen years. So the cure will have to be something that attacks and disables the root causes of MS.
My only comment about CIS or RIS and treating early is most patients wouldn’t know unless it was extremely obvious
Eg my main attack was my hands with altered sensation (I thought it was carpal tunnel syndrome) but looking back now I had lehrmittes sign at least 12-18 months prior plus back pain.
Unless we MRI almost every person I think it’s too late for most people as they move to “real” symptomatic MS.
I just don’t know what the solution is here. Fortunately and unfortunately MS doesn’t work in the same way a stroke, cardiac arrest etc so the education piece would need to be significant and start in schools as well.
I think stigmatization is difficult, because so little is widely known. Besides not really being taught in school, many neurologist are to blame because there is so much division in schools of thought. Here in the United States it seems as if there was initially effort to teach about MultipleSclerosis in the schools, but it never really seem to go anywhere. I still have a coloring book that one of the big associations provided when they came to talk to our elementary school years ago, and also provided materials for us to raise money in our local neighborhoods. I just can’t remember if it was the MSAA or the NMSS. I still have the coloring books in storage somewhere.
As far as the big Pharma companies holding back from developing cures to diseases in an effort to create unlimited, decades long revenue streams… that’s not entirely true. Many do something like that, but most actually do attempt to find cures as there will always be some thing else to Research and help with drugs. I understand about being upset that there aren’t cures available or better therapies to stop progression and damage in MS. But at the same time it’s too easy to blame big Pharma because they are an easy target, and some have been vilified in the news when big stories break about the bad actors. The even bigger truth is that the disease is extremely complex and good science takes an excruciatingly long time to do what it does safely and effectively.
To the poster who’s been harmed by being treated badly by doctors; that’s just horrible. And to be ignored is even worse. But unfortunately there can be a cure for MS unrelated to reparative therapies as they are separate things. A cure would stop the attacks and that’s pretty much it, as our bodies would be responsible for the rest, or a reparative therapy would be. I am in the same boat in a way as the progression of the disease has caused so much damage that I am basically bedbound now. And if there were a cure available tomorrow, I would still be left with all the accumulated damage. It’s really not fair and I completely understand anyone who is angry and upset about it.
I think medicine and science should do everything possible to check for anything that could harm a person as that is part of the oath that doctors take to become doctors. I think it’s ridiculous to argue over things that can’t be effectively measured, like whether people might feel stigmatized by finding out that they have multiple sclerosis or the propensity to develop it. The disease itself is exponentially worse than worrying about it. I think the era of personalized medicine is getting closer to being able to abolish most diseases in humans, or at least lighten the load. I personally believe that learning leads to understanding, and that knowing something gives more freedom than ignorance. I also personally believe that MRIs should be part of preventative medicine, but with caveats. Like at certain ages, etc. It would have to be something that was agreed-upon by the person wider medical community. But as far as being worried about how giving news to a patient about possible multiple sclerosis would have on their mental state is the purview of therapist and psychologist, not GPs. That’s my opinion. But that’s not to say that doctors shouldn’tcq still show compassion and sympathy, and some amount of empathy.
I'm still trying to figure out why people with PPMS aren't given Cladribine on diagnosis. I have a PPMS diagnosis with no disability, just a little bit of neuropathy in my left thumb, index finger and second finger (which honestly could also be one of the 2 herniated discs in my neck) and tinnitus. My new neurologist actually said she'd have called my situation RIS if not for a bad hip. I have no disc height at L5/S1 and have had sciatica for 30 years - I think the hip is due to compensating for back issues. But that aside I'd happily try cladribine.
Aug 25, 2023·edited Aug 25, 2023Liked by Gavin Giovannoni
RIS needs to be treated. The bigger problem is in catching the disease at the RIS stage which is a very rare occurrence (unless you make the whole population get regular MRIs and NfL tests) and in most cases the first radiologic evidence is also symptomatic (i.e. CIS).
Regarding IRTs, would you recommend a RRMS patient (with only 1 spinal lesion, clear brain MRI and lots of "relapses") switch from Ocrevus to Clabridine?
"At post-mortem, an estimated 25% of people with pathological features of the disease were never diagnosed in life. This means they had either never had symptoms or their symptoms were mild and/or atypical and never triggered a diagnostic work-up."
That absolutely isn't true. I was severely disabled by typical MS for literally decades, with no diagnosis or treatment. If I'd died during those decades, which I absolutely should have, I'd have been one of that 25%.
A "diagnostic work-up" was never done, due to bigotry and discrimination by dozens of NHS HCPs. They committed gross medical negligence. As for why? People with mental impairments have a life expectancy significantly shorter than the general population. That's usually from common conditions. Imagine trying to convince the NHS that as well as a neurodevelopmental condition, you have a rare neurodegenerative disease. And imagine trying to convince them that your brain and life still matter. I never managed it. Add to that poverty, lack of formal education, class, gender, abusive family, being LGBTQ+, etc.
As for a cure: MS isn't cured until I'm cured. That means undoing the damage done to my body and brain by MS & the NHS.
I realise that I'm perceived as an irrelevant statistical anomaly. But no one actually knows how often this is done to people. And the belief that people like me don't matter, don't count, and should just be ignored, is why it happened to me in the first place.
I find the concept of a diagnosis as “stigmatising” hard to understand to be honest.
Certainly there are potential socioeconomic sequelae to consider, eg impacts on various insurances, career choices and decisions on whether to have biological children as some examples.
I was Dx in 2006, at 45. I taught hs for 30 yrs.; alright,after Dx. for a bit over 12 yrs. Forced to retire in June, 2018 bc my MS disability soared. My R arm and leg don’t work. My mobility is almost non-existent. At 62, I feel like a spectator. Prof. G., I truly wish you were my Dr. You are always spot on and accurate with your MS remedies. Sadly, my Neuros have basically put me out to pasture. Unfortunately every Neuro I encountered, has agendas with X- large pharma cos. Finally, my picture should be next to #EBVcausesMS. Ty for your wisdom. Lastly, for shame on your peers for disrespecting you. A million thanks for your credible, accurate, reliable MS information. (SMS-SolvingMS)
Indeed, your our question about the many persons with lesions who don't go on to develop MS, and your pondering on some sort of self correction against the disease is interesting.
Could this posit the question of whether different DMT's could be a double edged sword in spite of the overall effect of helping more individuals than they harm?
I think it is worth pointing out that big pharma are not interested in 'cures' per se for any disease given it's bad news for shareholder bottomline/return, instead it's better to provide continuous 'life long' drugs (like Tysabri which I'm on) than provide a 'cure', same for many other illnesses, we mustn't forget big pharma is a 1.4 trillion dollar industry and has a massive ecosystem to support. However having said that I'm extremely grateful for the drugs/care I receive and yes of course I'd love to be cured one day so I can run/hike again but not sure that's going to happen any time soon.
I agree. What I also find interesting in the research is the inconsistent use of "prodrome." A prodrome is an early set of signs or symptoms that indicate the onset of a disease before more typical symptoms develop. Some claim CIS is part of the MS prodrome, some say RIS, and some say both. To your point, if you have lesions, you have MS. I saw a neurologist for five years with symptoms. I had an EEG, VEP, EP, spinal tap, two neuropsych evals, and numerous MRIs. It took almost five years for the MRI to show anything. Once it did, I had a large (almost 4cm) tumefactive MS lesion. I was finally diagnosed at a large MS Center in 2012. Prior to seeing the neurologist, I was diagnosed with PCOS, interstitial cystitis, and microscopic colitis, and visited many other specialists. I was even losing my voice. The neurologist I saw during those five years told me to see an ENT; I found out I have a paralyzed vocal chord! My experience has led me to be involved in research so people do not have to go through what I went through. Thank you for your work!
Hoping and praying that MS is due to a mutant virus, that this virus can be controlled, and that by the disease can be stopped in its tracks by doing so. Basically, I hope that it's never too late for a cure.
Cure must mean a permanent stop to progression (worsening): not stability for five years, or ten years, or fifteen years. So the cure will have to be something that attacks and disables the root causes of MS.
I would choose to be treated too! I sure wish that when I had my first sensory symptoms I could have been treated. It was a very long road.
Another informative post! Be assured if anyone close to me ever exhibits signs of MS I will push them to advocate for your suggested DMT’s!!
My only comment about CIS or RIS and treating early is most patients wouldn’t know unless it was extremely obvious
Eg my main attack was my hands with altered sensation (I thought it was carpal tunnel syndrome) but looking back now I had lehrmittes sign at least 12-18 months prior plus back pain.
Unless we MRI almost every person I think it’s too late for most people as they move to “real” symptomatic MS.
I just don’t know what the solution is here. Fortunately and unfortunately MS doesn’t work in the same way a stroke, cardiac arrest etc so the education piece would need to be significant and start in schools as well.
I think stigmatization is difficult, because so little is widely known. Besides not really being taught in school, many neurologist are to blame because there is so much division in schools of thought. Here in the United States it seems as if there was initially effort to teach about MultipleSclerosis in the schools, but it never really seem to go anywhere. I still have a coloring book that one of the big associations provided when they came to talk to our elementary school years ago, and also provided materials for us to raise money in our local neighborhoods. I just can’t remember if it was the MSAA or the NMSS. I still have the coloring books in storage somewhere.
As far as the big Pharma companies holding back from developing cures to diseases in an effort to create unlimited, decades long revenue streams… that’s not entirely true. Many do something like that, but most actually do attempt to find cures as there will always be some thing else to Research and help with drugs. I understand about being upset that there aren’t cures available or better therapies to stop progression and damage in MS. But at the same time it’s too easy to blame big Pharma because they are an easy target, and some have been vilified in the news when big stories break about the bad actors. The even bigger truth is that the disease is extremely complex and good science takes an excruciatingly long time to do what it does safely and effectively.
To the poster who’s been harmed by being treated badly by doctors; that’s just horrible. And to be ignored is even worse. But unfortunately there can be a cure for MS unrelated to reparative therapies as they are separate things. A cure would stop the attacks and that’s pretty much it, as our bodies would be responsible for the rest, or a reparative therapy would be. I am in the same boat in a way as the progression of the disease has caused so much damage that I am basically bedbound now. And if there were a cure available tomorrow, I would still be left with all the accumulated damage. It’s really not fair and I completely understand anyone who is angry and upset about it.
I think medicine and science should do everything possible to check for anything that could harm a person as that is part of the oath that doctors take to become doctors. I think it’s ridiculous to argue over things that can’t be effectively measured, like whether people might feel stigmatized by finding out that they have multiple sclerosis or the propensity to develop it. The disease itself is exponentially worse than worrying about it. I think the era of personalized medicine is getting closer to being able to abolish most diseases in humans, or at least lighten the load. I personally believe that learning leads to understanding, and that knowing something gives more freedom than ignorance. I also personally believe that MRIs should be part of preventative medicine, but with caveats. Like at certain ages, etc. It would have to be something that was agreed-upon by the person wider medical community. But as far as being worried about how giving news to a patient about possible multiple sclerosis would have on their mental state is the purview of therapist and psychologist, not GPs. That’s my opinion. But that’s not to say that doctors shouldn’tcq still show compassion and sympathy, and some amount of empathy.
"The question is, how hard do you want to look for deficits?"
When looking at measurable outcomes such as life expectancy, do patients with silent MS (minimal symptoms) live as long as healthy patients?
Thank you for all you do.
I agree, I don't understand why you wouldn't treat RIS.
I just disagree with the word 'cure'.
I think once a disease is triggered, that's it. There is no 'un-triggering' a disease.
You are only treating symptoms, and not 'curing'.
I'm still trying to figure out why people with PPMS aren't given Cladribine on diagnosis. I have a PPMS diagnosis with no disability, just a little bit of neuropathy in my left thumb, index finger and second finger (which honestly could also be one of the 2 herniated discs in my neck) and tinnitus. My new neurologist actually said she'd have called my situation RIS if not for a bad hip. I have no disc height at L5/S1 and have had sciatica for 30 years - I think the hip is due to compensating for back issues. But that aside I'd happily try cladribine.
RIS needs to be treated. The bigger problem is in catching the disease at the RIS stage which is a very rare occurrence (unless you make the whole population get regular MRIs and NfL tests) and in most cases the first radiologic evidence is also symptomatic (i.e. CIS).
Regarding IRTs, would you recommend a RRMS patient (with only 1 spinal lesion, clear brain MRI and lots of "relapses") switch from Ocrevus to Clabridine?
"At post-mortem, an estimated 25% of people with pathological features of the disease were never diagnosed in life. This means they had either never had symptoms or their symptoms were mild and/or atypical and never triggered a diagnostic work-up."
That absolutely isn't true. I was severely disabled by typical MS for literally decades, with no diagnosis or treatment. If I'd died during those decades, which I absolutely should have, I'd have been one of that 25%.
A "diagnostic work-up" was never done, due to bigotry and discrimination by dozens of NHS HCPs. They committed gross medical negligence. As for why? People with mental impairments have a life expectancy significantly shorter than the general population. That's usually from common conditions. Imagine trying to convince the NHS that as well as a neurodevelopmental condition, you have a rare neurodegenerative disease. And imagine trying to convince them that your brain and life still matter. I never managed it. Add to that poverty, lack of formal education, class, gender, abusive family, being LGBTQ+, etc.
As for a cure: MS isn't cured until I'm cured. That means undoing the damage done to my body and brain by MS & the NHS.
I realise that I'm perceived as an irrelevant statistical anomaly. But no one actually knows how often this is done to people. And the belief that people like me don't matter, don't count, and should just be ignored, is why it happened to me in the first place.
I find the concept of a diagnosis as “stigmatising” hard to understand to be honest.
Certainly there are potential socioeconomic sequelae to consider, eg impacts on various insurances, career choices and decisions on whether to have biological children as some examples.
My tingling feet and hands preceded my PPMS diagnosis by about 4-5 years. I would have gone for HSCT earlier but I'll be receiving HSCT Aug 28, 2023
Pure speculation, but could you suggest a possible timeline for Clinical Trials involving SAR441344 Frexalimab for PPMS?
I was Dx in 2006, at 45. I taught hs for 30 yrs.; alright,after Dx. for a bit over 12 yrs. Forced to retire in June, 2018 bc my MS disability soared. My R arm and leg don’t work. My mobility is almost non-existent. At 62, I feel like a spectator. Prof. G., I truly wish you were my Dr. You are always spot on and accurate with your MS remedies. Sadly, my Neuros have basically put me out to pasture. Unfortunately every Neuro I encountered, has agendas with X- large pharma cos. Finally, my picture should be next to #EBVcausesMS. Ty for your wisdom. Lastly, for shame on your peers for disrespecting you. A million thanks for your credible, accurate, reliable MS information. (SMS-SolvingMS)
Indeed, your our question about the many persons with lesions who don't go on to develop MS, and your pondering on some sort of self correction against the disease is interesting.
Could this posit the question of whether different DMT's could be a double edged sword in spite of the overall effect of helping more individuals than they harm?
Does the question at least deserve asking?