What started off as an MS-Selfie Newsletter on worsening MS has made it into print as a peer-reviewed scientific article. If you want to change the way MS is viewed and managed, please read it.
>> When I get time we will be launching a series of MS-Selfie MOOCs (massive open online
>> courses) co-designed with pwMS to help you self-manage your MS and to provide you with >> the knowledge and skills to ask the right questions of your HCP and MS services. Are you
Please please can we clone you and have you everywhere. Your incedible scientific article is a godsend. It encapsulates and clarifies so many aspects that explain what is going on with me, if only my neurologist thought the same . I have cerebral ‘only’ MS, no motor involvement. I had three months of not just worsening symptoms but new ones - but his conclusions was that it was not a relapse or exacerbation because the MRI taken 4 months prior to the new onset of symptoms showed no change from the previous 2 years so I am stable !!. So I have had to self manage myself holistically for six years – which has worked out incredibly well because of your and other research I love Fig 5 – time restricted eating, fermented drinks and food, so many things work. Especially 1,000mg DHA for neuron growth and connectivity and 500mg EPA for reducing inflammation.
Having an on line self management programme would be great especially if we can add our comments/ suggestions somewhere for you to review …. Which is also why you need to be cloned.
MOOC for MS is a great idea and I would definitely be interested. This article makes so much sense as someone living with MS. I feel as though my changes in disability are very hard to describe and measure but they’re real. I find it kind of heart breaking that even though I have had lemtrada and no relapses since, that my brain volume loss is evidence that my disease is progressing. I am going to do all I can by increasing my exercise and going ketogenic again and hope that there will be some add on therapies in the not too distant future. Thanks for sharing this work.
Hello Dr. Gavin, is there a way for me to submit my story to you for a case study? I would be very interested to hear your opinion on it. Thank you for all you do!
Jan 27, 2022·edited Jan 28, 2022Liked by Gavin Giovannoni
The MOOCs sounds like a fantastic way to learn and understand more around the subject of MS, especially Smoldering MS.
I was diagnosed 3 years ago with RRMS. My brother was diagnosed with RRMS over 25 years ago. I do not have any activity and I have no symptoms. My Neurologist has cancelled my annual MRI scan and has no interest in discussing a care plan for me. Smoldering MS will be top of my discussions in February when I have my annual appointment.
I am managing well through exercise, mediation and a wellness and nourishment program (Overcoming MS).
Firstly thank you for all do for pwMS, I feel like you are writing about me every time I read your posts about smoldering MS.
I have shown no activity on MRI for over 5 years now so have been turned down for Siponimod everytime I ask. Is there anyway I could convince my neurologist to reconsider as I am clearly progressing? Hopefully your paper will lead them to reconsider the criteria?
Also, if I were to catch COVID do you think it is wise to volunteer for the current Panoramic trial using Molnupiravir anti-virals? I could be totally wrong but I had what they called a 'herpes' infection in my eye for many years as a child which I have always suspected had something to do with my health issues. I am now fearful of what another virus hanging about in my system could lead to.....
I would be very interested in participating having worked in cancer care with prehab and holistic care planning I have often said this would be perfect for pwMS.
When I first read your smouldering hypothesis it was a eureka moment for me, made so much sense about how I was feeling. I was diagnosed with CIS after a lesion at T12 and positive LP, I had numbness and altered sensations from the knees down which did get much better over time. During recovery, I started to experience what I think is an MS hug, felt that my brain was getting foggy and I was starting to 'lose' words midway through a sentence. I couldn't understand why I was having cognitive issues and issues above where the lesion was. I had a relapse just over 2 years from the initial onset of symptoms and got my upgrade to MS, another spinal lesion (new symptoms from torso down) but no brain lesions? Could I have small smouldering brain lesions that aren't being picked up by conventional MRIs? I have started Ocrevus but I am around 90kg so maybe a higher dose would work better for me, do you know when the dosing trials will be completed? I don't have a family history of MS but I do have a family history of autoimmune diseases, after a quick google there is talk of EBV being implicated in most of them (lymphoma, myasthenia gravis, T1 DM, ulcerative colitis), can you have a genetic make up that makes you susceptible to an EBV infection progressing to an immune mediated disease? Sorry for all the questions!
Thank you for this review, it brings together so much of the bits I was starting to understand and bring together in my own mind. I do find it quite difficult to read as a relatively newly diagnosed person as current treatments aren’t really designed for this version of MS and my experience of NHS neurology so far doesn’t give me much hope for any outside the box thinking in monitoring and treatment. I’m very interested in a MOOC, both in creating(if I can be of any help) and participating.
Yes, I would sign up for a MOOC. The wholistic approach is where it is at, and I know so many PWMS who just want a guide, because navigating all the approaches, all the "cures" out there is exhausting and depletes whatever time we have left. Thank you! I'll comment again after I read the article. Congrats, this is a big deal!
A MOOC would be very useful for pwMS, MS education is lacking in the UK. The more people know about their condition, the better they can manage their MS. I am very lucky to be able to exercise and eat healthily. Not everyone is in a position to make lifestyle improvements, so the course could be a real motivation for them.
I would definitely be interested in MOOC for smouldering MS both in creating and participating. I give talks to student HCPs on Long Term Conditions and how MS is affecting me. My EDSS is about 6.5, no relapses but definitely got MS
Regarding reducing the anticholinergic load what can be used instead of Amitriptyline for temple pain? When first prescribed 8 years ago the neuro said nothing else will reach that part of your brain. Is there something else available now that could take it's place? I am concerned that it is also scuppering weight loss efforts.
>> When I get time we will be launching a series of MS-Selfie MOOCs (massive open online
>> courses) co-designed with pwMS to help you self-manage your MS and to provide you with >> the knowledge and skills to ask the right questions of your HCP and MS services. Are you
>> interested?
Yes, yes, yes please!
Hi Prof G ,
Please please can we clone you and have you everywhere. Your incedible scientific article is a godsend. It encapsulates and clarifies so many aspects that explain what is going on with me, if only my neurologist thought the same . I have cerebral ‘only’ MS, no motor involvement. I had three months of not just worsening symptoms but new ones - but his conclusions was that it was not a relapse or exacerbation because the MRI taken 4 months prior to the new onset of symptoms showed no change from the previous 2 years so I am stable !!. So I have had to self manage myself holistically for six years – which has worked out incredibly well because of your and other research I love Fig 5 – time restricted eating, fermented drinks and food, so many things work. Especially 1,000mg DHA for neuron growth and connectivity and 500mg EPA for reducing inflammation.
Having an on line self management programme would be great especially if we can add our comments/ suggestions somewhere for you to review …. Which is also why you need to be cloned.
Thank you so much
MOOC for MS is a great idea and I would definitely be interested. This article makes so much sense as someone living with MS. I feel as though my changes in disability are very hard to describe and measure but they’re real. I find it kind of heart breaking that even though I have had lemtrada and no relapses since, that my brain volume loss is evidence that my disease is progressing. I am going to do all I can by increasing my exercise and going ketogenic again and hope that there will be some add on therapies in the not too distant future. Thanks for sharing this work.
Hello Dr. Gavin, is there a way for me to submit my story to you for a case study? I would be very interested to hear your opinion on it. Thank you for all you do!
The MOOCs sounds like a fantastic way to learn and understand more around the subject of MS, especially Smoldering MS.
I was diagnosed 3 years ago with RRMS. My brother was diagnosed with RRMS over 25 years ago. I do not have any activity and I have no symptoms. My Neurologist has cancelled my annual MRI scan and has no interest in discussing a care plan for me. Smoldering MS will be top of my discussions in February when I have my annual appointment.
I am managing well through exercise, mediation and a wellness and nourishment program (Overcoming MS).
Firstly thank you for all do for pwMS, I feel like you are writing about me every time I read your posts about smoldering MS.
I have shown no activity on MRI for over 5 years now so have been turned down for Siponimod everytime I ask. Is there anyway I could convince my neurologist to reconsider as I am clearly progressing? Hopefully your paper will lead them to reconsider the criteria?
Also, if I were to catch COVID do you think it is wise to volunteer for the current Panoramic trial using Molnupiravir anti-virals? I could be totally wrong but I had what they called a 'herpes' infection in my eye for many years as a child which I have always suspected had something to do with my health issues. I am now fearful of what another virus hanging about in my system could lead to.....
Thank you!
I would be very interested in participating having worked in cancer care with prehab and holistic care planning I have often said this would be perfect for pwMS.
When I first read your smouldering hypothesis it was a eureka moment for me, made so much sense about how I was feeling. I was diagnosed with CIS after a lesion at T12 and positive LP, I had numbness and altered sensations from the knees down which did get much better over time. During recovery, I started to experience what I think is an MS hug, felt that my brain was getting foggy and I was starting to 'lose' words midway through a sentence. I couldn't understand why I was having cognitive issues and issues above where the lesion was. I had a relapse just over 2 years from the initial onset of symptoms and got my upgrade to MS, another spinal lesion (new symptoms from torso down) but no brain lesions? Could I have small smouldering brain lesions that aren't being picked up by conventional MRIs? I have started Ocrevus but I am around 90kg so maybe a higher dose would work better for me, do you know when the dosing trials will be completed? I don't have a family history of MS but I do have a family history of autoimmune diseases, after a quick google there is talk of EBV being implicated in most of them (lymphoma, myasthenia gravis, T1 DM, ulcerative colitis), can you have a genetic make up that makes you susceptible to an EBV infection progressing to an immune mediated disease? Sorry for all the questions!
Thank you for this review, it brings together so much of the bits I was starting to understand and bring together in my own mind. I do find it quite difficult to read as a relatively newly diagnosed person as current treatments aren’t really designed for this version of MS and my experience of NHS neurology so far doesn’t give me much hope for any outside the box thinking in monitoring and treatment. I’m very interested in a MOOC, both in creating(if I can be of any help) and participating.
I would be interested in participating in the MOOC - I have MS but very few symptoms so far
Always interested in holistic approaches. Thanks for talking about it! 🏋️♀️
Yes, I would sign up for a MOOC. The wholistic approach is where it is at, and I know so many PWMS who just want a guide, because navigating all the approaches, all the "cures" out there is exhausting and depletes whatever time we have left. Thank you! I'll comment again after I read the article. Congrats, this is a big deal!
A MOOC would be very useful for pwMS, MS education is lacking in the UK. The more people know about their condition, the better they can manage their MS. I am very lucky to be able to exercise and eat healthily. Not everyone is in a position to make lifestyle improvements, so the course could be a real motivation for them.
Hello Gavin,
I would definitely be interested in MOOC for smouldering MS both in creating and participating. I give talks to student HCPs on Long Term Conditions and how MS is affecting me. My EDSS is about 6.5, no relapses but definitely got MS
Regarding reducing the anticholinergic load what can be used instead of Amitriptyline for temple pain? When first prescribed 8 years ago the neuro said nothing else will reach that part of your brain. Is there something else available now that could take it's place? I am concerned that it is also scuppering weight loss efforts.
I am interested in participating.