1) Not everyone with MS lucky enough to be part of the post DMT era. Some, like me, stuck in the pre DMT era.
2) I met Jacqueline du Pres in the 1970s. She told me her doctors had put her on very high doses of steroids. This may have contributed to her early death. She was desperately unhappy at losing her beauty - the steroids gave her a moon face and unwanted facial hair, both of which she hated. Also, she was devastated by her husband Daniel Barenboim leaving her to go and live with a lover in Paris. She had also lost her ability to play the cello. Her mood was rock bottom, she had nothing to live for. It is arguable that she died partly from a broken heart.
1) MS is incurable and progressive and the best science still has mot changed this
2) MS can be fatal and is MUCH more likely to cause death in those not on dmt. Too many pwMS say they don’t want treatment and/or HCPs talke a wait and see approach. For these reasons it is absolutely critical pwMS know it can be fatal especially without proper treatment.
My mother had severe malignant MS and died at 51. This was the pre DMT era.
This is harsh but shouldn’t be sugar coated, more people on DMTs sooner will significantly reduce mortality risk and risk of more severe disability
Reading the impact of this post on MumP has reinforced my view that this info should be more helpfully put into its wider context - not to sugarcoat but to provide the facts in a way that allows everyone who reads it to have a balanced perspective. Percentages pertinent to death in MS would have been useful.
Honestly ProfG after reading one of your articles I often go watch an Aaron Boster vid on YouTube to cheer myself up - gloom&doom to cheerful and positive🤣
We do need the true facts and you provide them very clearly, but just as you phone your lonely patients to wish them Merry Christmas, there needs to be a degree of encouragement and more emphasis on the reassurance you give = the vast majority of us are living longer and many in better shape than before DMTs and I say this as a woman who will hit the Big60 this year!
So please don’t be left feeling too appalled and frightened MumP.
As someone newly diagnosed I felt disturbed and unsettled after reading this article and it's not because I have false expectations about what death with chronic disease can look like. I have had many experiences with death as a cancer nurse and with patients with MS on medical floors. Thinking about my own death and the manner in which i may die and the suffering that will likely surround it is something I am often plagued with when I feel my anxiety about my diagnosis resurfacing. I found this article unnecessarily triggering. I have started to come regularly to this site to find a sense of agency and hope in your writings. Hope for me means learning what I can so I stay an informed, engaged and advocate for myself. I wonder if the goals of the post could be achieved through a more sensitive appreciation of who its consumers are. As pwMS there is a constant struggle to balance realism with maintaining hope and positivity so that we can enjoy the time we do have while also preparing for the future and not.be crippled by the uncertainty of it all. I feel this post got that balance wrong, not in its messaging but in its delivery. I say this with so much respect for all the work you do but some kind of disclaimer might help people decide whether they are in the appropriate head space to read this.
Feb 19, 2023·edited Feb 19, 2023Liked by Gavin Giovannoni
As a person with MS in my 40s, I don’t actually find this all that frightening. Perhaps it’s because I lost all four of my grandparents over the last few years. All of them died from items on the list of things I’m likely to die from- sepsis, pneumonia, and failure to thrive from swallowing difficulties- and at a similar age as I’m likely to die at. Were they good deaths? Absolutely not. But, the human body has a natural end point.
I would, like most, I suspect, prefer to die at a ripe old age (but somehow magically with the abilities of a 30 year old) in my sleep. That’s just not reality for the vast majority of folks.
Once I made it through the first year of diagnosis (with a lot of therapy and exercise and a little medication) and finally came to believe I wasn’t going to drop dead in the next 10 minutes, I felt much better. Something related to MS is likely to be the end of me, just as something related to my mother’s diabetes and something related to my father’s heart disease are likely to be the end of them. Unless, of course, we all get hit by a bus first. Until then, we’ll just keep enjoying life.
I too am somewhat floored by this, I had (stupidly) assumed I wouldn't die of MS. It appears I was wrong. I wish I hadn't read this, it's a glimpse of the future which I don't think helps me at all, there's no avoiding it apparently. We all know our access to the most effective DMTs is not within our control, and even when we can get more effective ones it's because almost we've deteriorated on the 'entry level ones', and then access is almost certainly time limited. Perhaps issue a warning on future similar articles?
Given how forthright you are (which I appreciate) I almost didn't read this. But at the end of the day, if I'm doing all I reasonably can to control my MS, I'm not going to lose more sleep over the rare, sudden and unpredictable cases. But it's definitely important to moderate the message to newly diagnosed people.
I appreciate you don’t pull your punches and also that there is no benefit in hiding from the truth but this particular MS selfie has floored me. My poor son. I can find no real hope in your essay other than DMTs ‘should’ improve things. But for children with MS who have to live with this disease for so many more years than their adult counterparts it often feels so endlessly bleak and this kind of article does zero to dispel that anxiety. You are simply the messenger but…..oof…..
Yes! I am that Judy Graham! Sad that I'm at Stage 9. Please be confident that your daughter will do well if she's taking a DMT and ALSO doing all the lifestyle things that make such a huge difference. Please encourage her to eat very healthily, exercise daily, perhaps meditate. I think the Overcoming Multiple Sclerosis programme by Prof. George Jelinek is excellent.
It’s a hard read, but I appreciate the information all the same. Facts are the only thing we have to ground us.
I think the hard thing with MS is that our individual prognosis are impossible to know. We all know those who have sadly died far too young and those who still get around ok in their 70s, but there is such variability it is very hard to know how to prepare oneself when faced with best case and worst case scenario. It’s as uncertain as the symptoms we can suffer.
Even taking a DMD can feel a bit like taking a stab in the dark, we know getting one is better than nothing and getting a good one early is our best chance (assuming we even have a choice), but how long will it hold it at bay, will we get the side effects and can we buy enough time before the next new DMD is available.
It’s not an easy landscape for anxiety.
I just try to not worry about the things I can’t control or know in the future and focus on what I have now and what I can do to preserve it. I am hoping the EBV theory will result in effective treatments for us all, it is heartbreaking to hear other pwMS so frightened. I wish we could all meet in person to help each other ❤️
Wow, that was depressing. I knew that some deaths are MS related, but the way it's always framed I'd thought it was 3% at most, not 3 quarters 🤕
Dr Google is a great thing. I spent 30 years with the NHS telling me I was making my symptoms up and refusing me access to a neurologist or MRI. If I hadn't diagnosed myself via Google and gone private, I would have died without an MS diagnosis.
I find it really hard whenever I read about how having MS is different now in the 'post-DMT' era. I lived in the 'pre-DMT' era till 2018, severely disabled with no treatment at all. I didn't get a highly effective DMT till 2021. Please keep in mind that DMT's are meaningless to people who can't access them. I wonder all the time if I'm the only disenfranchised person this has happened to, or if there are people going through that torture right now, begging for medical care one cannot access.
I'm not sure what to say to a selfie like this. Except that all we can do is our best and fight to not give up. I'm in two clinical trials and about to try keto. I'll consider donating my brain, but my hatred and bitterness towards doctors is so epic, I don't know if I can.
Feb 19, 2023·edited Feb 19, 2023Liked by Gavin Giovannoni
The purpose of the post is to raise awareness of the need for donating MS Brain. Kind of morbid but very well explained and appropriate, in my opinion.
On the side, it brings up the issue of life with MS and what that means. Do we all want to go around constantly thinking how seriously ill we are or could be? What is the realistic responsible alternative? And note when speaking about all this tuff, I am aware how bad it is and scary for some.
I’ve had a long “MS career”, starting before the onslaught of Google. There were no DMTs in 1990. I am a person who can’t go on without knowing about something important as much as I can. I went to a wheelchair convention and planned out how I’d be able to get around in style and function. I scoured the university library on MS. The MS Soc. had videos showing the good, bad and the ugly (guy only moving his pinky and then dying ). I went to groups of newly diagnosed as well as old timers. I immersed myself.
Betaseron came out, I went to new MS doc who used intravenous steroids. Over the course of a few years I went from wheelchair, shaking, voice tremors, unable to hand write well, low bladder function, etc, to very adequately functional by 2000. I spent the next 20 or so years doing my shots but not thinking about MS. But bladder issues returned along with a limp, and I stopped the Betaseron and began immersing myself again in the illness and its treatment. My understanding had to be completely updated.
Those 20 years of not thinking about it were priceless. So there is something to be said for ignorance. I’m 65 now. Things have not been bad, but still MS changed my entire life. The thought of death, now, is not nearly as troubling as it was 35 years ago. Obviously, as anyone gets older, the opportunity is there for one to get more comfortable with the notion of it, although I think for me, I’ll never be truly comfortable with that inevitable fact, MS or not.
Wow. This is unbelievable information that you have written. Thank you. I’m not formally, medically trained, but I read a lot of science being a pwMS.
I have thought so long and hard about what is the root cause of MS, and when you said it’s a virus, and perhaps why the lymphocytes are in the brain, I have felt that’s exactly it. A virus. As a person who has lived with very aggressive MS, I have felt that there’s been something trying to kill me. HSCT has been my lifesaver, even though I was beyond all statistics to say that it would help. Thank you once again for the very important and informative piece.
I can only imagine what you're going through. It sounds like you are doing all the right things.
Fats: omega 3, 6 9 all good. Fish oil, flax seed oil, evening primrose oil. In food plus supplements.
Wahl and Jelinek diet very different from each other: Wahls says eat grass-fed meat plus a lot of organ meats. Jelinek says no meat and no animal fats and strictly no dairy. Jelinek easier to follow plus there's a lively UK branch, worth joining and going on one of their retreats - can be.very life affirming. It would be good for your daughter to meet others with MS who are doing well.
Thanks for this, especially now I'm at Stage 9.
1) Not everyone with MS lucky enough to be part of the post DMT era. Some, like me, stuck in the pre DMT era.
2) I met Jacqueline du Pres in the 1970s. She told me her doctors had put her on very high doses of steroids. This may have contributed to her early death. She was desperately unhappy at losing her beauty - the steroids gave her a moon face and unwanted facial hair, both of which she hated. Also, she was devastated by her husband Daniel Barenboim leaving her to go and live with a lover in Paris. She had also lost her ability to play the cello. Her mood was rock bottom, she had nothing to live for. It is arguable that she died partly from a broken heart.
1) MS is incurable and progressive and the best science still has mot changed this
2) MS can be fatal and is MUCH more likely to cause death in those not on dmt. Too many pwMS say they don’t want treatment and/or HCPs talke a wait and see approach. For these reasons it is absolutely critical pwMS know it can be fatal especially without proper treatment.
My mother had severe malignant MS and died at 51. This was the pre DMT era.
This is harsh but shouldn’t be sugar coated, more people on DMTs sooner will significantly reduce mortality risk and risk of more severe disability
Reading the impact of this post on MumP has reinforced my view that this info should be more helpfully put into its wider context - not to sugarcoat but to provide the facts in a way that allows everyone who reads it to have a balanced perspective. Percentages pertinent to death in MS would have been useful.
Honestly ProfG after reading one of your articles I often go watch an Aaron Boster vid on YouTube to cheer myself up - gloom&doom to cheerful and positive🤣
We do need the true facts and you provide them very clearly, but just as you phone your lonely patients to wish them Merry Christmas, there needs to be a degree of encouragement and more emphasis on the reassurance you give = the vast majority of us are living longer and many in better shape than before DMTs and I say this as a woman who will hit the Big60 this year!
So please don’t be left feeling too appalled and frightened MumP.
Painful but necessary reading - thank you - it helps focus the mind.
I'd rather know the reality than hear "It'll be ok"
As someone newly diagnosed I felt disturbed and unsettled after reading this article and it's not because I have false expectations about what death with chronic disease can look like. I have had many experiences with death as a cancer nurse and with patients with MS on medical floors. Thinking about my own death and the manner in which i may die and the suffering that will likely surround it is something I am often plagued with when I feel my anxiety about my diagnosis resurfacing. I found this article unnecessarily triggering. I have started to come regularly to this site to find a sense of agency and hope in your writings. Hope for me means learning what I can so I stay an informed, engaged and advocate for myself. I wonder if the goals of the post could be achieved through a more sensitive appreciation of who its consumers are. As pwMS there is a constant struggle to balance realism with maintaining hope and positivity so that we can enjoy the time we do have while also preparing for the future and not.be crippled by the uncertainty of it all. I feel this post got that balance wrong, not in its messaging but in its delivery. I say this with so much respect for all the work you do but some kind of disclaimer might help people decide whether they are in the appropriate head space to read this.
As a person with MS in my 40s, I don’t actually find this all that frightening. Perhaps it’s because I lost all four of my grandparents over the last few years. All of them died from items on the list of things I’m likely to die from- sepsis, pneumonia, and failure to thrive from swallowing difficulties- and at a similar age as I’m likely to die at. Were they good deaths? Absolutely not. But, the human body has a natural end point.
I would, like most, I suspect, prefer to die at a ripe old age (but somehow magically with the abilities of a 30 year old) in my sleep. That’s just not reality for the vast majority of folks.
Once I made it through the first year of diagnosis (with a lot of therapy and exercise and a little medication) and finally came to believe I wasn’t going to drop dead in the next 10 minutes, I felt much better. Something related to MS is likely to be the end of me, just as something related to my mother’s diabetes and something related to my father’s heart disease are likely to be the end of them. Unless, of course, we all get hit by a bus first. Until then, we’ll just keep enjoying life.
I too am somewhat floored by this, I had (stupidly) assumed I wouldn't die of MS. It appears I was wrong. I wish I hadn't read this, it's a glimpse of the future which I don't think helps me at all, there's no avoiding it apparently. We all know our access to the most effective DMTs is not within our control, and even when we can get more effective ones it's because almost we've deteriorated on the 'entry level ones', and then access is almost certainly time limited. Perhaps issue a warning on future similar articles?
Given how forthright you are (which I appreciate) I almost didn't read this. But at the end of the day, if I'm doing all I reasonably can to control my MS, I'm not going to lose more sleep over the rare, sudden and unpredictable cases. But it's definitely important to moderate the message to newly diagnosed people.
I appreciate you don’t pull your punches and also that there is no benefit in hiding from the truth but this particular MS selfie has floored me. My poor son. I can find no real hope in your essay other than DMTs ‘should’ improve things. But for children with MS who have to live with this disease for so many more years than their adult counterparts it often feels so endlessly bleak and this kind of article does zero to dispel that anxiety. You are simply the messenger but…..oof…..
Hi Jane
Yes! I am that Judy Graham! Sad that I'm at Stage 9. Please be confident that your daughter will do well if she's taking a DMT and ALSO doing all the lifestyle things that make such a huge difference. Please encourage her to eat very healthily, exercise daily, perhaps meditate. I think the Overcoming Multiple Sclerosis programme by Prof. George Jelinek is excellent.
Best wishes for her healthy future!
judygraham2146@gmail.com
It’s a hard read, but I appreciate the information all the same. Facts are the only thing we have to ground us.
I think the hard thing with MS is that our individual prognosis are impossible to know. We all know those who have sadly died far too young and those who still get around ok in their 70s, but there is such variability it is very hard to know how to prepare oneself when faced with best case and worst case scenario. It’s as uncertain as the symptoms we can suffer.
Even taking a DMD can feel a bit like taking a stab in the dark, we know getting one is better than nothing and getting a good one early is our best chance (assuming we even have a choice), but how long will it hold it at bay, will we get the side effects and can we buy enough time before the next new DMD is available.
It’s not an easy landscape for anxiety.
I just try to not worry about the things I can’t control or know in the future and focus on what I have now and what I can do to preserve it. I am hoping the EBV theory will result in effective treatments for us all, it is heartbreaking to hear other pwMS so frightened. I wish we could all meet in person to help each other ❤️
Wow, that was depressing. I knew that some deaths are MS related, but the way it's always framed I'd thought it was 3% at most, not 3 quarters 🤕
Dr Google is a great thing. I spent 30 years with the NHS telling me I was making my symptoms up and refusing me access to a neurologist or MRI. If I hadn't diagnosed myself via Google and gone private, I would have died without an MS diagnosis.
I find it really hard whenever I read about how having MS is different now in the 'post-DMT' era. I lived in the 'pre-DMT' era till 2018, severely disabled with no treatment at all. I didn't get a highly effective DMT till 2021. Please keep in mind that DMT's are meaningless to people who can't access them. I wonder all the time if I'm the only disenfranchised person this has happened to, or if there are people going through that torture right now, begging for medical care one cannot access.
I'm not sure what to say to a selfie like this. Except that all we can do is our best and fight to not give up. I'm in two clinical trials and about to try keto. I'll consider donating my brain, but my hatred and bitterness towards doctors is so epic, I don't know if I can.
The purpose of the post is to raise awareness of the need for donating MS Brain. Kind of morbid but very well explained and appropriate, in my opinion.
On the side, it brings up the issue of life with MS and what that means. Do we all want to go around constantly thinking how seriously ill we are or could be? What is the realistic responsible alternative? And note when speaking about all this tuff, I am aware how bad it is and scary for some.
I’ve had a long “MS career”, starting before the onslaught of Google. There were no DMTs in 1990. I am a person who can’t go on without knowing about something important as much as I can. I went to a wheelchair convention and planned out how I’d be able to get around in style and function. I scoured the university library on MS. The MS Soc. had videos showing the good, bad and the ugly (guy only moving his pinky and then dying ). I went to groups of newly diagnosed as well as old timers. I immersed myself.
Betaseron came out, I went to new MS doc who used intravenous steroids. Over the course of a few years I went from wheelchair, shaking, voice tremors, unable to hand write well, low bladder function, etc, to very adequately functional by 2000. I spent the next 20 or so years doing my shots but not thinking about MS. But bladder issues returned along with a limp, and I stopped the Betaseron and began immersing myself again in the illness and its treatment. My understanding had to be completely updated.
Those 20 years of not thinking about it were priceless. So there is something to be said for ignorance. I’m 65 now. Things have not been bad, but still MS changed my entire life. The thought of death, now, is not nearly as troubling as it was 35 years ago. Obviously, as anyone gets older, the opportunity is there for one to get more comfortable with the notion of it, although I think for me, I’ll never be truly comfortable with that inevitable fact, MS or not.
Wow. This is unbelievable information that you have written. Thank you. I’m not formally, medically trained, but I read a lot of science being a pwMS.
I have thought so long and hard about what is the root cause of MS, and when you said it’s a virus, and perhaps why the lymphocytes are in the brain, I have felt that’s exactly it. A virus. As a person who has lived with very aggressive MS, I have felt that there’s been something trying to kill me. HSCT has been my lifesaver, even though I was beyond all statistics to say that it would help. Thank you once again for the very important and informative piece.
Hi Jane
I can only imagine what you're going through. It sounds like you are doing all the right things.
Fats: omega 3, 6 9 all good. Fish oil, flax seed oil, evening primrose oil. In food plus supplements.
Wahl and Jelinek diet very different from each other: Wahls says eat grass-fed meat plus a lot of organ meats. Jelinek says no meat and no animal fats and strictly no dairy. Jelinek easier to follow plus there's a lively UK branch, worth joining and going on one of their retreats - can be.very life affirming. It would be good for your daughter to meet others with MS who are doing well.
Best wishes
Judy
😕
Thanks for a very well laid out selfie. A reminder that our disease is progressive…