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 disagree with this notion. If a researcher found a literal cure for MS or anything else it would be huge dollars for pharma
Plus it would be almost impossible to silence them if this was proven. Outside of the US countries with universal healthcare pay the pharmas to subsidise medicine if there was a cure they’d make sure it was available as it would save government money in the long run
I look at examples like HPV vaccine, rabies vaccine etc as if pharma wasn’t interested in curing or solving an issue we wouldn’t have vaccines available to us with extremely high efficacy.
The problem is defining a cure and finding it. A cure in MS is switching of the ongoing autoimmune attack or viral infection, depending on what causes MS, and not repair of the damaged nervous system. This means you can be in a wheelchair as a result of MS and still be cured.
Meaning a cure is another way of saying halting progression. That's why as someone with a PPMS diagnosis but no disability I'd try Cladribine in a heart beat. I'd even pay out of pocket if I could get it.
Vaccines are produced by pharma because they are given to billions of people, making it profitable for pharma. Vaccinated populations live for longer, requiring more drugs, resulting in even more pharma profits. If you believe the conspiracy theorists (which I don’t), they contain sufficient heavy metals to promote ill health.
If you don’t measure a temperature, you can’t find a fever. Pharma funds the majority of modern research. Hence, nobody is funded to look for a cure for MS. This is why, when anybody tries to see if existing generic anti-virals have an effect in MS, the research funding proposal is rejected. You’ll notice that there are many ongoing trials of life and disease prolonging treatments. You need only look at BTK inhibitor research to realise that this is true - BTK inhibitors are unlikely to result in cure of any illness.
Charlie, I must admit I’m in your camp. If an EBV cure were discovered, would that be a good thing or not? I recall realizing one day in infusion what a huge industry cancer is, and I shall say no more…🌷
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!
Kristine, thanks. I have little more to add to this. Quite right about prodrome. In the 90s, I went through a similar experience. I believe it has been said it took 7 years (and I can’t recall how many physicians) here in the states to finally be diagnosed. How much function was lost in that time, I will never know. Hit it and hit it early.🌷
I'm sorry that happened to you. 🤕 I was misdiagnosed with Chronic Fatigue Syndrome; it took me decades to get an MS diagnosis. How did you get involved in research? I'd like to try change things too, so this doesn't happen to anyone else. 💛
I was diagnosed for 8 years with M.E/CFS...I paid to see a Neurologist privately who diagnosed me the same day - I went back on the NHS and have been on Tysabri now for 12 yrs. I often wondered how much less disabled I may be had I been diagnosed sooner.
I was severely disabled by MS since I was a child, with no diagnosis. A few decades later, I was diagnosed with Optic Neuritis. 5 years after that, I was misdiagnosed with M.E./CFS.
12 years after the M.E./CFS misdiagnosis, I saw a neurologist privately and told him I have MS. He gave me my first MRI scan. I had 'significant cerebral atrophy' and 'very obvious MS'.
I recently had Alemtuzumab. I have PTSD from what the NHS did to me; I'm struggling to live with it. I was too ill and traumatized to hold the NHS accountable. I'm massively more disabled than I would be if I'd had access to healthcare. I hope you're handling it all better than me! 💛
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.
Please keep in mind that for some people, the most vulnerable, doctors aren't always on our side. The NHS actively prevented me from getting a diagnosis for obvious MS that severely disabled me, for decades, by refusing to refer me to a neurologist. For people like me, it's not a matter of getting an early diagnosis, it's getting a diagnosis at all. Patients need to be able to self refer to neurology, and for an MRI scan. As long as NHS doctors can refuse referrals, some people will never be able to access a diagnosis. The complaints process is not fit for purpose, so they just get away with medical negligence.
It’s not doctors preventing referral, but the NHS playing field and goalposts (created by NHS managers and politicians) that are at fault. There are big disincentives to making a referral. Absolute referral numbers are recorded for GPs and not the quality or outcomes from the referrals made. The NHS values and rewards the GP who makes 10 really bad referrals/year much higher than the doctor who makes 100 really good referrals/year. There’s just no mechanism to evaluate referral quality yet. When hospitals receive a referral they apply a standard protocol to stratify referrals which doesn’t account for the referring GP.
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 do understand what you're saying, and I realise I'm speaking through the literal PTSD the NHS has given me. We can be 'cured' of MS, by the medical definition, but still be bedbound by the damage it has already done. But, as someone whose brain has been wrecked by MS and the NHS, that wouldn't feel 'cured' to me, in the colloquial sense. 🤕 It's all academic anyway, I doubt anything that could be called a 'cure', by any definition, will be available to someone like me in my lifetime. 😞
I disagree entirely with your view that big pharma want to find cures. If they did, we’d have lots of cures, but we don’t and there are very few in the pipeline. They are literally drug lords which produce drugs and research to make us dependant lifelong. Read “Bad Pharma” to appreciate what’s happening (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3635613/).
Even within the MS diagnosis there is deception. I’ve read that RRMS doesn’t affect life expectancy. It won’t, if as the RRMS progresses, you call it SPMS. MS is one disease spectrum, not RRMS, PPMS and SPMS. These titles were created to get around funding organisations. Silent MS (and probably CFS) is one end of the spectrum and PPMS is just a title applied to the other end.
Once diagnosed with a cancer can you ever be cured? I was diagnosed with an invasive melanoma last year and had it excised. Fortunately, my lymph nodes were clear. I am now one year into my monitoring and if I get to 5 years the dermatologist says I would be classified as having been cured. Not sure why the same principle can't be applied to MS.
In my experience breast and kidney cancer are the most common cancers to recur many years after the 5 year all clear is given. Melanoma rarely re-emerges again once people reach the 5 year mark without recurrence.
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.
Cladribine is not licensed for PPMS. The phase 3 trials were done in patients with relapse-onset disease (relapsing-remitting and CIS). However, there is some data suggesting it may work in PPMS.
I've read a few encouraging things and given it's a pretty safe DMT I think the idea of a 'cure' ie. stopping progression makes sense in people with little to no disability whether it's been 'classified' as RIS, CIS, RRMS or PPMS. For someone like me, given I have no disability (I've never had vision issues or classic attacks you'd attribute to RRMS) and only a handful of lesions in the spinal cord I actually wonder at what point in the progression of the disease I'm actually at, but I know this, I'd rather not have disability if I can help it. I'm also at an age, 54, where I sense a bit of reluctance by my clinic to have me take ocrevus. Not that ocrevus wows me lol. 24% is not an efficacy rate that seems encouraging to me. I'd rather find a way to try Cladribine off-label and it is what I'm going to discuss with my neurologist at my next visit. (FWIW She's a big fan of yours Dr. G.)
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?
That's sounds a lot like me. Clear brain MRI, 4 spinal cord lesions, no disability. Diagnosis was ppms, but very 'slow moving'. I was told the diagnosis could also be RIS but given an issue with my left hip flexor which gets painful after 40 minutes of walking they're leaning towards PPMS.
"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.
It’s not bigotry and discrimination, but ignorance and dogma. We can see that MS has 2 targets for treatment: The EBV disease and the CNS damage that has resulted. It’s like heart attacks. Statins reduce myocardial injuries and cardiac rehab helps the damaged myocardium to recover.
I'm a Vulnerable Adult. What happened to me wasn't ignorance, it was discrimination and bigotry and not about MS specifically. I have characteristics that mean I wasn't listened to or believed, less value was placed on my life, and there was nothing I could do. What was done to me wasn't random, it was systemic. It was nothing to do with science. It is a societal problem. Advances in medicine are irrelevant to someone like me, who is denied access to healthcare due to being perceived by HCPs as not being worth the time or money.
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.
The head-in-the-sand or Ostrich syndrome doesn't protect you from damage. This is why we need to push back on this point. Stigmatisation is social construct and can be counteracted with education.
I see you're in Toronto as well. Are you a patient at Barlo? I'm in the same boat. PPMS diagnosis this past spring. No disability so I've been curious about HSCT and to be honest curious about Cladribine given I have no disability.
Yes Barlo. They have a nice spacious waiting room and a big timeline installed on the wall, which reminds me of the Gr8 project murals my kids did in middle school. Showing great advancements such as vit D correlation etc. It felt like it was there add credibility to the fact that they have recieved so many millions for the building construction and salaries and operating costs, where I was despite being properly diagnosed I guess, given only the option of Ocrevus. I was completely told to forget about HSCT without much nuance or reasoning, and only told that Ocrevus was my only treatment option. To my neuros credit she had an excellent touch in the spinal tap.
Interesting. My neuro at Barlo didn't completely dismiss hsct. Shee admitted I wouldn't qualify to have it done in Ottawa but didn't think paying out of pocket was crazy. I'm going to ask again at my Dec appointment as well as see if I can convince to give cladribine a try despite having a ppms diagnosis. Although she leaves a bit of room for me having CIS.
More because I have ppms, but she has left room for it to be cis as the only issueni have is with my left leg but those issues overlap with a complete disc protrusion of L5/S1. I see Dr. Chu.
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 disagree with this notion. If a researcher found a literal cure for MS or anything else it would be huge dollars for pharma
Plus it would be almost impossible to silence them if this was proven. Outside of the US countries with universal healthcare pay the pharmas to subsidise medicine if there was a cure they’d make sure it was available as it would save government money in the long run
I look at examples like HPV vaccine, rabies vaccine etc as if pharma wasn’t interested in curing or solving an issue we wouldn’t have vaccines available to us with extremely high efficacy.
The problem is defining a cure and finding it. A cure in MS is switching of the ongoing autoimmune attack or viral infection, depending on what causes MS, and not repair of the damaged nervous system. This means you can be in a wheelchair as a result of MS and still be cured.
Meaning a cure is another way of saying halting progression. That's why as someone with a PPMS diagnosis but no disability I'd try Cladribine in a heart beat. I'd even pay out of pocket if I could get it.
🤕
Vaccines are produced by pharma because they are given to billions of people, making it profitable for pharma. Vaccinated populations live for longer, requiring more drugs, resulting in even more pharma profits. If you believe the conspiracy theorists (which I don’t), they contain sufficient heavy metals to promote ill health.
If you don’t measure a temperature, you can’t find a fever. Pharma funds the majority of modern research. Hence, nobody is funded to look for a cure for MS. This is why, when anybody tries to see if existing generic anti-virals have an effect in MS, the research funding proposal is rejected. You’ll notice that there are many ongoing trials of life and disease prolonging treatments. You need only look at BTK inhibitor research to realise that this is true - BTK inhibitors are unlikely to result in cure of any illness.
Charlie, I must admit I’m in your camp. If an EBV cure were discovered, would that be a good thing or not? I recall realizing one day in infusion what a huge industry cancer is, and I shall say no more…🌷
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!
Kristine, thanks. I have little more to add to this. Quite right about prodrome. In the 90s, I went through a similar experience. I believe it has been said it took 7 years (and I can’t recall how many physicians) here in the states to finally be diagnosed. How much function was lost in that time, I will never know. Hit it and hit it early.🌷
I'm sorry that happened to you. 🤕 I was misdiagnosed with Chronic Fatigue Syndrome; it took me decades to get an MS diagnosis. How did you get involved in research? I'd like to try change things too, so this doesn't happen to anyone else. 💛
I was diagnosed for 8 years with M.E/CFS...I paid to see a Neurologist privately who diagnosed me the same day - I went back on the NHS and have been on Tysabri now for 12 yrs. I often wondered how much less disabled I may be had I been diagnosed sooner.
Yes, it’s how much did I lose?🌷
I'm so sorry that happened to you. 🤕
I was severely disabled by MS since I was a child, with no diagnosis. A few decades later, I was diagnosed with Optic Neuritis. 5 years after that, I was misdiagnosed with M.E./CFS.
12 years after the M.E./CFS misdiagnosis, I saw a neurologist privately and told him I have MS. He gave me my first MRI scan. I had 'significant cerebral atrophy' and 'very obvious MS'.
I recently had Alemtuzumab. I have PTSD from what the NHS did to me; I'm struggling to live with it. I was too ill and traumatized to hold the NHS accountable. I'm massively more disabled than I would be if I'd had access to healthcare. I hope you're handling it all better than me! 💛
I’m glad you’re getting treatment, U! 🌷
Thank you! It feels far, far too late, but I'm still trying, I always did. 🤕🥀
One of the best ways to start contributing to MS research now is https://www.iconquerms.org/
Who can join?
-Anyone who has MS
-Anyone who cares for a person with MS
-Anyone who wants to support MS research
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.
Yes, we are working on it.
Please keep in mind that for some people, the most vulnerable, doctors aren't always on our side. The NHS actively prevented me from getting a diagnosis for obvious MS that severely disabled me, for decades, by refusing to refer me to a neurologist. For people like me, it's not a matter of getting an early diagnosis, it's getting a diagnosis at all. Patients need to be able to self refer to neurology, and for an MRI scan. As long as NHS doctors can refuse referrals, some people will never be able to access a diagnosis. The complaints process is not fit for purpose, so they just get away with medical negligence.
It’s not doctors preventing referral, but the NHS playing field and goalposts (created by NHS managers and politicians) that are at fault. There are big disincentives to making a referral. Absolute referral numbers are recorded for GPs and not the quality or outcomes from the referrals made. The NHS values and rewards the GP who makes 10 really bad referrals/year much higher than the doctor who makes 100 really good referrals/year. There’s just no mechanism to evaluate referral quality yet. When hospitals receive a referral they apply a standard protocol to stratify referrals which doesn’t account for the referring GP.
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 empathize, as always. 🌷
Thank you, and I always appreciate it. 🥀
I do understand what you're saying, and I realise I'm speaking through the literal PTSD the NHS has given me. We can be 'cured' of MS, by the medical definition, but still be bedbound by the damage it has already done. But, as someone whose brain has been wrecked by MS and the NHS, that wouldn't feel 'cured' to me, in the colloquial sense. 🤕 It's all academic anyway, I doubt anything that could be called a 'cure', by any definition, will be available to someone like me in my lifetime. 😞
I disagree entirely with your view that big pharma want to find cures. If they did, we’d have lots of cures, but we don’t and there are very few in the pipeline. They are literally drug lords which produce drugs and research to make us dependant lifelong. Read “Bad Pharma” to appreciate what’s happening (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3635613/).
"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?
This study has not been done and I am not sure it is possible to do as how do you identify these subjects ante mortem as having MS.
Even within the MS diagnosis there is deception. I’ve read that RRMS doesn’t affect life expectancy. It won’t, if as the RRMS progresses, you call it SPMS. MS is one disease spectrum, not RRMS, PPMS and SPMS. These titles were created to get around funding organisations. Silent MS (and probably CFS) is one end of the spectrum and PPMS is just a title applied to the other end.
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'.
Re:: 'Cure'
Once diagnosed with a cancer can you ever be cured? I was diagnosed with an invasive melanoma last year and had it excised. Fortunately, my lymph nodes were clear. I am now one year into my monitoring and if I get to 5 years the dermatologist says I would be classified as having been cured. Not sure why the same principle can't be applied to MS.
In my experience breast and kidney cancer are the most common cancers to recur many years after the 5 year all clear is given. Melanoma rarely re-emerges again once people reach the 5 year mark without recurrence.
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.
Cladribine is not licensed for PPMS. The phase 3 trials were done in patients with relapse-onset disease (relapsing-remitting and CIS). However, there is some data suggesting it may work in PPMS.
I've read a few encouraging things and given it's a pretty safe DMT I think the idea of a 'cure' ie. stopping progression makes sense in people with little to no disability whether it's been 'classified' as RIS, CIS, RRMS or PPMS. For someone like me, given I have no disability (I've never had vision issues or classic attacks you'd attribute to RRMS) and only a handful of lesions in the spinal cord I actually wonder at what point in the progression of the disease I'm actually at, but I know this, I'd rather not have disability if I can help it. I'm also at an age, 54, where I sense a bit of reluctance by my clinic to have me take ocrevus. Not that ocrevus wows me lol. 24% is not an efficacy rate that seems encouraging to me. I'd rather find a way to try Cladribine off-label and it is what I'm going to discuss with my neurologist at my next visit. (FWIW She's a big fan of yours Dr. G.)
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?
That's sounds a lot like me. Clear brain MRI, 4 spinal cord lesions, no disability. Diagnosis was ppms, but very 'slow moving'. I was told the diagnosis could also be RIS but given an issue with my left hip flexor which gets painful after 40 minutes of walking they're leaning towards PPMS.
you simply need to do a spinal tap. if you have oligoclonal bands, you are PPMS be definition since more than 2 spinal lesions already
"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.
It’s not bigotry and discrimination, but ignorance and dogma. We can see that MS has 2 targets for treatment: The EBV disease and the CNS damage that has resulted. It’s like heart attacks. Statins reduce myocardial injuries and cardiac rehab helps the damaged myocardium to recover.
I'm a Vulnerable Adult. What happened to me wasn't ignorance, it was discrimination and bigotry and not about MS specifically. I have characteristics that mean I wasn't listened to or believed, less value was placed on my life, and there was nothing I could do. What was done to me wasn't random, it was systemic. It was nothing to do with science. It is a societal problem. Advances in medicine are irrelevant to someone like me, who is denied access to healthcare due to being perceived by HCPs as not being worth the time or money.
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.
The head-in-the-sand or Ostrich syndrome doesn't protect you from damage. This is why we need to push back on this point. Stigmatisation is social construct and can be counteracted with education.
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
Can I ask how things went?
I see you're in Toronto as well. Are you a patient at Barlo? I'm in the same boat. PPMS diagnosis this past spring. No disability so I've been curious about HSCT and to be honest curious about Cladribine given I have no disability.
Yes Barlo. They have a nice spacious waiting room and a big timeline installed on the wall, which reminds me of the Gr8 project murals my kids did in middle school. Showing great advancements such as vit D correlation etc. It felt like it was there add credibility to the fact that they have recieved so many millions for the building construction and salaries and operating costs, where I was despite being properly diagnosed I guess, given only the option of Ocrevus. I was completely told to forget about HSCT without much nuance or reasoning, and only told that Ocrevus was my only treatment option. To my neuros credit she had an excellent touch in the spinal tap.
Interesting. My neuro at Barlo didn't completely dismiss hsct. Shee admitted I wouldn't qualify to have it done in Ottawa but didn't think paying out of pocket was crazy. I'm going to ask again at my Dec appointment as well as see if I can convince to give cladribine a try despite having a ppms diagnosis. Although she leaves a bit of room for me having CIS.
Did she think you wouldn't qualify because u have PPMS? or because you have to first have failed on a DMT? Dr. Mucilli shut me down.
More because I have ppms, but she has left room for it to be cis as the only issueni have is with my left leg but those issues overlap with a complete disc protrusion of L5/S1. I see Dr. Chu.
Ernie- me too, hands and feet. I had “peripheral neuropathy”. Why? Who knows? Good luck with your HSCT!🌷
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?