Wow this is so mind blowingly satisfying to have this level of information written in an easy to understand language and organised logically. I can’t thank you enough Prof G. The video of the electrical signal along the demyelinated nerve is visually exactly how it feels!!! The SEL lesions I’ve never heard of, scary as f!! Would we ever know as pwMS if we had these and how many on our yearly MRI’s? Why aren’t we getting this breakdown of detail each year to track our disease to feed into our self management and DMT choices? And YES YES YES to the wellness clinic! So many of us want to feel some level of input and control over our lives with MS. Thank you again, amazing information!!!
Please include MSGym (Trevor Wicken) in your wellness clinic. His program is phenomenal. Neuro Conscious Movement. It's a game changer for anyone with a neurodegenerative disease.
I usually search on Youtube for any interesting documentaries. Whilst looking up youtube videos I came across a documentary on people who suffer Multiple sclerosis (MS) and their real treatment from MADIBAHERBALCENTER. COM I had never heard of this crippling and debilitating disease affecting a lot of Americans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralysed, cancer etc. but I also get to understand that there has been a successful cure to this disease from MADIBAHERBALCENTER. COM It is too much for a patient to endure such as they slowly begin to pass away if the right medication is not taken .Having a positive mind is a powerful tool .My prayers go out to Multiple sclerosis (MS) patients and their caregivers.
A fascinating read with lots of extremely clear facts that I was unaware of. I ave now got lots of new questions to ask my neurologist. The wellness clinic is a brilliant idea. Brain health should be promoted to the population as a whole and part of MS treatment from the point of diagnosis.
Thank you, yet again, for fascinating, readable and highly relevant article. The flickering red shadowing on the Conduction in demyelated axion video mimics the mosquito hitting the electric bar feeling when TriGem neuralgia hits 😱. Yes please 🙏 to a MS Wellness Clinic.
I often read this blog and I love it, however at times, I cannot stop the feeling of hopelessness it gives me. I am doing my PhD at the moment and trying to get a career in academia, this article made my heart sink a little bit thinking that no matter what I do I will never be able to achieve my dreams because of MS. There really isn’t any light at the end of the tunnel with this disease is there..?
Not sure I agree with you. The prognosis of someone living with MS is so much better now than it was 30 years ago, but we mustn't accept that we have beaten this disease when we someone is NEIDA. We need to acknowledge that we have to go beyond NEIDA to target smouldering MS to give pwMS hope that yes we can make the kind of differences we want in the real long term. This is why our treatment target has to be to maximise lifelong brain health for pwMS with the aim of getting them to old age with a healthy brain.
There is a lot of research going on into smouldering disease that should give you hope.
I don't believe in the 'Ostrich Syndrome' way of thinking. Unless we acknowledge a problem how can we solve it?
I just wanted to say, “Hi” from a full professor living with MS. I know I’ll never really know, but I have a feeling that, in addition to dumb luck, all of the brain stimulating work I do as a part of my job + exercising 4-5 days/ week is why I’m doing so well. Don’t give up on the dreams! They may actually be a part of your “therapy!”
Thank you very much for this article. It filled many gaps in knowledge for me and gave me ideas of things to ask and talk with my doctor about in my next appointment. Really appreciate all the writing.
This is mind blowing information I've had MS now spms since 1994 at no stage through my MS journey have either of the 2 neurologists I've had 'looking' after my MS ever discussed anything like this with me or the two MS Nurses. The MS Nurse is more obsessed with what I should be doing about the menopause but despite being a women doesn't have the correct knowledge to be that informative so inevitably you refer back to your GP. There seems to be many missed opportunities in a person's MS?journey and with that the STILL postcode lottery and whether your NEUROLOGIST has the time or seemingly can be bothered to cover these, what I can only see as VERY important topics, subjects. I'm now 55 feeling totally shoved under a bus to just get on with it because neither Cons or MS Nurse have the time to see you discuss this. Haven't seen my Cons since November 22 and this feb my MS Nurse put me on a 2 year recall not really helpful at all. More emphasise needs to be put on providing proper care for those with Progressive MS, although let's face it ALL MS is PROGRESSIVE to some degree, let's help us all live our best lives thus improving patient care and well-being. Now don't even have the financial capability to pay to join this wonderful informative group. DWP once again bashing Disabled people so my household me SPMS, Rheumatoid Arthritis and Osteoarthritis husband Parkinsons 59 now but diagnosed since 2020 (self employed which DWP don't understand) WTC was fine as went on annual earnings UC total utter incompetent benefit. We haven't received a penny for the last 3 months having to go to full tribunal which ironically my husband had to do to get PIP. Can't afford to be depressed and can't afford to live. Apologies for such a rant but being ill with incurable degenerative diseases , not self inflicted I might add, does not make for a happy healthy life 😭
I find myself in the odd situation of being over 45, with lots of lesions, including some "black holes", but almost no symptoms. No fatigue. No problems with hot weather. No mobility issues. I know this is unlikely to last and I feel like my head is a ticking time bomb. But I find the huge variation in symptoms fascinating. Why on earth I am ok right now and others are not? I wish I could "give" this to other people with MS.
Many trials showed that reducing these hot microglia slows the progression of MS. There was a trial of Plaquenil, BTK, Masitinib. Seems like majority of them slows the progression. If not B cells, T cells, microglia, macrophages, mast cells then what other cells drive the progression? Ok there is still theory about EBV virus. Only Ocrevus selectively kills EBV sick B cells (on peripheries, not inside the brain). Do you think that BTK can kill those sick EBV infected cells inside the brain? What about those revelations about gut bacteria which starts the relapse? So many questions...
I love hearing about Brain Health. Tell me more, please :) I have lived with MS since 2008 and began laughing every day at that time in order to reduce stress and boost the right responses in my body. I count my blessings every day for still being fully able, and wish that Laughter Yoga would be part of the planning for an MS Wellness Centre.
Thanks gavin for sharing your researching work. The inflammatory.. I ve been on dmt rebif for 15 yrs.. They say its gone into remission.. 🙏🧘♂️®️.
As well as healthier eating and fasting and 4000 iu vit d and k2.. Astragalus Root may be one of the most potent when it comes to the immune system. Used for thousands of years in Traditional Chinese Medicine it is as an adaptogen.
I have found this useful.. I don't mind touching base with you on this i also go to Queens for my treatments and mir scans.. Hopfully would be interesting too see another scan.. I think so of the well being we can do it treatment of initial stages.. The environment play an important factor.
I was just wondering if you think taopatch could efficiently wrk along side ms people. Could this technology be infused with treatments. How do you feel about genetic modifications as gene treatments... 🙏 You might of met my son his in last master in this subject and more on nero Brain 🧠 aspect.
I think a sharing of hypothetical information would also be useful. There’s a lot of people considering diets help but my NHS neurologists just say ‘eat healthily’. They won’t support OMS or Wahls protocols as they’re not proven or accredited (or whatever) by NICE. Same with exercise and brain practices. So a wellness centre that shared all of those - ‘maybe try this’ - ideas as well as facts would be good. And the people who try them could be part of the data collection and help establish more evidence. In fact I think more prelim data collection on gut health and lifestyle should be taken at first diagnosis so maybe we could find a commonality in people who get MS. Some think it’s simply unhappiness (Bioresonance) !!!
Thank you so much for this explanation. It’s always a question for me, why are my symptoms worsening when I have no new lesions. I have never heard any of my previous neurologist suggest anything like this to me!
I’m living on disability but will see if I can squeeze even a tiny bit as I know every penny adds up because I would absolutely love a Wellness Clinic. I have only had one neurologist that specialized in MS. I believe I new more about it than my other previous neurologist. I have just started on US Medicare disability and pray there is an MS neuro available with my coverage.
I am new to term "smouldering MS" and "SEL lesions", as my doctor told me last week that my lesions can be described as SEL. I am getting worse each month this year, since recovering from severe pneumonia which was treated for 2 months with antibiotics. When I read your article, it makes such sense now! I just hope this worsenning will not end up with me being totally disabled, as I am only 36 years old... Thank you!
Wonderful Prof. Gavin. Your research is admirable.
Thank you so much. I hope one day the best treatment for MS will be reported that results in revitalizing and stopping the progressive disability of MS in the optimal way.
Wow this is so mind blowingly satisfying to have this level of information written in an easy to understand language and organised logically. I can’t thank you enough Prof G. The video of the electrical signal along the demyelinated nerve is visually exactly how it feels!!! The SEL lesions I’ve never heard of, scary as f!! Would we ever know as pwMS if we had these and how many on our yearly MRI’s? Why aren’t we getting this breakdown of detail each year to track our disease to feed into our self management and DMT choices? And YES YES YES to the wellness clinic! So many of us want to feel some level of input and control over our lives with MS. Thank you again, amazing information!!!
We will only get one shot at designing and setting up a wellness clinic, so any ideas are welcome.
Please include MSGym (Trevor Wicken) in your wellness clinic. His program is phenomenal. Neuro Conscious Movement. It's a game changer for anyone with a neurodegenerative disease.
I concur
I usually search on Youtube for any interesting documentaries. Whilst looking up youtube videos I came across a documentary on people who suffer Multiple sclerosis (MS) and their real treatment from MADIBAHERBALCENTER. COM I had never heard of this crippling and debilitating disease affecting a lot of Americans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralysed, cancer etc. but I also get to understand that there has been a successful cure to this disease from MADIBAHERBALCENTER. COM It is too much for a patient to endure such as they slowly begin to pass away if the right medication is not taken .Having a positive mind is a powerful tool .My prayers go out to Multiple sclerosis (MS) patients and their caregivers.
A fascinating read with lots of extremely clear facts that I was unaware of. I ave now got lots of new questions to ask my neurologist. The wellness clinic is a brilliant idea. Brain health should be promoted to the population as a whole and part of MS treatment from the point of diagnosis.
Thank you, yet again, for fascinating, readable and highly relevant article. The flickering red shadowing on the Conduction in demyelated axion video mimics the mosquito hitting the electric bar feeling when TriGem neuralgia hits 😱. Yes please 🙏 to a MS Wellness Clinic.
I often read this blog and I love it, however at times, I cannot stop the feeling of hopelessness it gives me. I am doing my PhD at the moment and trying to get a career in academia, this article made my heart sink a little bit thinking that no matter what I do I will never be able to achieve my dreams because of MS. There really isn’t any light at the end of the tunnel with this disease is there..?
Not sure I agree with you. The prognosis of someone living with MS is so much better now than it was 30 years ago, but we mustn't accept that we have beaten this disease when we someone is NEIDA. We need to acknowledge that we have to go beyond NEIDA to target smouldering MS to give pwMS hope that yes we can make the kind of differences we want in the real long term. This is why our treatment target has to be to maximise lifelong brain health for pwMS with the aim of getting them to old age with a healthy brain.
There is a lot of research going on into smouldering disease that should give you hope.
I don't believe in the 'Ostrich Syndrome' way of thinking. Unless we acknowledge a problem how can we solve it?
I just wanted to say, “Hi” from a full professor living with MS. I know I’ll never really know, but I have a feeling that, in addition to dumb luck, all of the brain stimulating work I do as a part of my job + exercising 4-5 days/ week is why I’m doing so well. Don’t give up on the dreams! They may actually be a part of your “therapy!”
Thank you very much for this article. It filled many gaps in knowledge for me and gave me ideas of things to ask and talk with my doctor about in my next appointment. Really appreciate all the writing.
This is mind blowing information I've had MS now spms since 1994 at no stage through my MS journey have either of the 2 neurologists I've had 'looking' after my MS ever discussed anything like this with me or the two MS Nurses. The MS Nurse is more obsessed with what I should be doing about the menopause but despite being a women doesn't have the correct knowledge to be that informative so inevitably you refer back to your GP. There seems to be many missed opportunities in a person's MS?journey and with that the STILL postcode lottery and whether your NEUROLOGIST has the time or seemingly can be bothered to cover these, what I can only see as VERY important topics, subjects. I'm now 55 feeling totally shoved under a bus to just get on with it because neither Cons or MS Nurse have the time to see you discuss this. Haven't seen my Cons since November 22 and this feb my MS Nurse put me on a 2 year recall not really helpful at all. More emphasise needs to be put on providing proper care for those with Progressive MS, although let's face it ALL MS is PROGRESSIVE to some degree, let's help us all live our best lives thus improving patient care and well-being. Now don't even have the financial capability to pay to join this wonderful informative group. DWP once again bashing Disabled people so my household me SPMS, Rheumatoid Arthritis and Osteoarthritis husband Parkinsons 59 now but diagnosed since 2020 (self employed which DWP don't understand) WTC was fine as went on annual earnings UC total utter incompetent benefit. We haven't received a penny for the last 3 months having to go to full tribunal which ironically my husband had to do to get PIP. Can't afford to be depressed and can't afford to live. Apologies for such a rant but being ill with incurable degenerative diseases , not self inflicted I might add, does not make for a happy healthy life 😭
Fabulous article. So often we are told our disease is stable due to no new lesions. Please pass on your understanding to all other UK neurologists.
Thanks for this.
I find myself in the odd situation of being over 45, with lots of lesions, including some "black holes", but almost no symptoms. No fatigue. No problems with hot weather. No mobility issues. I know this is unlikely to last and I feel like my head is a ticking time bomb. But I find the huge variation in symptoms fascinating. Why on earth I am ok right now and others are not? I wish I could "give" this to other people with MS.
Many trials showed that reducing these hot microglia slows the progression of MS. There was a trial of Plaquenil, BTK, Masitinib. Seems like majority of them slows the progression. If not B cells, T cells, microglia, macrophages, mast cells then what other cells drive the progression? Ok there is still theory about EBV virus. Only Ocrevus selectively kills EBV sick B cells (on peripheries, not inside the brain). Do you think that BTK can kill those sick EBV infected cells inside the brain? What about those revelations about gut bacteria which starts the relapse? So many questions...
Curious for prof G to expand a little on this comment, interesting information
Very clear and concise - hardly any TLA's (three letter acronyms) so very easy to understand. ;-)
I love hearing about Brain Health. Tell me more, please :) I have lived with MS since 2008 and began laughing every day at that time in order to reduce stress and boost the right responses in my body. I count my blessings every day for still being fully able, and wish that Laughter Yoga would be part of the planning for an MS Wellness Centre.
Thanks gavin for sharing your researching work. The inflammatory.. I ve been on dmt rebif for 15 yrs.. They say its gone into remission.. 🙏🧘♂️®️.
As well as healthier eating and fasting and 4000 iu vit d and k2.. Astragalus Root may be one of the most potent when it comes to the immune system. Used for thousands of years in Traditional Chinese Medicine it is as an adaptogen.
I have found this useful.. I don't mind touching base with you on this i also go to Queens for my treatments and mir scans.. Hopfully would be interesting too see another scan.. I think so of the well being we can do it treatment of initial stages.. The environment play an important factor.
I was just wondering if you think taopatch could efficiently wrk along side ms people. Could this technology be infused with treatments. How do you feel about genetic modifications as gene treatments... 🙏 You might of met my son his in last master in this subject and more on nero Brain 🧠 aspect.
Thank you sharing your data.
I think a sharing of hypothetical information would also be useful. There’s a lot of people considering diets help but my NHS neurologists just say ‘eat healthily’. They won’t support OMS or Wahls protocols as they’re not proven or accredited (or whatever) by NICE. Same with exercise and brain practices. So a wellness centre that shared all of those - ‘maybe try this’ - ideas as well as facts would be good. And the people who try them could be part of the data collection and help establish more evidence. In fact I think more prelim data collection on gut health and lifestyle should be taken at first diagnosis so maybe we could find a commonality in people who get MS. Some think it’s simply unhappiness (Bioresonance) !!!
Thank you so much for this explanation. It’s always a question for me, why are my symptoms worsening when I have no new lesions. I have never heard any of my previous neurologist suggest anything like this to me!
I’m living on disability but will see if I can squeeze even a tiny bit as I know every penny adds up because I would absolutely love a Wellness Clinic. I have only had one neurologist that specialized in MS. I believe I new more about it than my other previous neurologist. I have just started on US Medicare disability and pray there is an MS neuro available with my coverage.
I am new to term "smouldering MS" and "SEL lesions", as my doctor told me last week that my lesions can be described as SEL. I am getting worse each month this year, since recovering from severe pneumonia which was treated for 2 months with antibiotics. When I read your article, it makes such sense now! I just hope this worsenning will not end up with me being totally disabled, as I am only 36 years old... Thank you!
Wonderful Prof. Gavin. Your research is admirable.
Thank you so much. I hope one day the best treatment for MS will be reported that results in revitalizing and stopping the progressive disability of MS in the optimal way.