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.
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!”
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 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.
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.
In my opinion you should focus on two things: 1st, the newly diagnosed should be educated in understanding that what they do today will impact their future (today I'm paying my lack of information 20 years ago...)
2nd, establish a program for those with high commorbidity issues that covers psychology, nutrition, physiotherapy and others, going beyond DMTs (IRTs).
Many patients just need a little hope and guidance.
This is exactly what I was thinking. I wish I would have continued to exercise at the level I was when first diagnosed.
Now that my walking isn't so great and running is not safe it would be nice to have group classes set up for varying abilities to learn exercises that not only they can do but that may reprogram neuro pathways and improve function.
Dietary classes are something pretty much everyone in America should attend but having ones that focus on anti-inflammatory foods and keep up with research for PwMS would be amazing!
Maybe you can find a grant to get it started.
I am an oncology nurse and the cancer center I worked at before had a wellness navigator who did all of this with our cancer patients plus access to lots of complimentary medicine such as healing touch and acupressure/acupuncture. It was a wonderful program.
Good Luck and keep up the amazing work you are doing. Those of us with MS appreciate it and so do our family and friends!
Also making sure the newly diagnosed know about all the resources out there and where to get reputable information. There are lots of people out trying to sell us the cure and making big bucks. Someone told my husband about freeze dried brain supplements when I was first diagnosed. However, I know there are some supplements out there that may help and providing the truth about all of them would be another excellent resource. You probably have an integrative pharmacist there who could help with that.
Nora in a proportion of patients accelerated brain volume loss begins very early. The problem we have is defining when MS begins. Most people have MS for years before their first symptom or diagnosis.
Yes and yes. MS is a biological disease and you can have MS with a normal MRI. This however is very unusual and occurs early in the disease. And yes, the better the quality of the MRI the better you are able to pick up lesions.
I realise how important general brain health and wellness is for everyone and not just those with MS and have been recommended two excellent books by my GP, Brain Health and XX Brain, both written by Dr Lisa Mosconi. I would be interested to hear your thoughts on what she has to say. As for MS Wellness Clinics, there are many excellent MS Therapy Centres around the country which are doing their best to provide services and therapy’s for people with MS, it is challenging times for them.I belong to the Chilterns MS Centre to which you are a patron and is amongst the largest. Could you perhaps work together to provide the type of wellness service that you have in mind? I’m sure that they would greatly value your input.
Thankyou so much for this. I've never had it explained to me why my walking has deteriorated so much since my diagnosis 6 years ago. I was put straight on to Tysabri and annual MRI's show NEDA, and I've had no relapses but I'm getting worse despite eating well, meditating, exercising as much as I can. I would definitely be interested in an MS Wellness clinic, and it's good to see lots of ideas being suggested.
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 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.
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.
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.
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!”
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.
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.
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.
Thank you for your work 🙏🙏🙏
Wellness clinic YES !
I have some ideas about what an MS Wellness Clinic should look like, but would appreciate what you would want from one and how you see it being run.
In my opinion you should focus on two things: 1st, the newly diagnosed should be educated in understanding that what they do today will impact their future (today I'm paying my lack of information 20 years ago...)
2nd, establish a program for those with high commorbidity issues that covers psychology, nutrition, physiotherapy and others, going beyond DMTs (IRTs).
Many patients just need a little hope and guidance.
Like myself living in rural North Carolina really interested, first time explained in way that’s mind blowing. Tks
This is exactly what I was thinking. I wish I would have continued to exercise at the level I was when first diagnosed.
Now that my walking isn't so great and running is not safe it would be nice to have group classes set up for varying abilities to learn exercises that not only they can do but that may reprogram neuro pathways and improve function.
Dietary classes are something pretty much everyone in America should attend but having ones that focus on anti-inflammatory foods and keep up with research for PwMS would be amazing!
Maybe you can find a grant to get it started.
I am an oncology nurse and the cancer center I worked at before had a wellness navigator who did all of this with our cancer patients plus access to lots of complimentary medicine such as healing touch and acupressure/acupuncture. It was a wonderful program.
Good Luck and keep up the amazing work you are doing. Those of us with MS appreciate it and so do our family and friends!
Also making sure the newly diagnosed know about all the resources out there and where to get reputable information. There are lots of people out trying to sell us the cure and making big bucks. Someone told my husband about freeze dried brain supplements when I was first diagnosed. However, I know there are some supplements out there that may help and providing the truth about all of them would be another excellent resource. You probably have an integrative pharmacist there who could help with that.
I have just seen your article.. thank you professor Giovannini for the information..does brain atrophy starts one year after the onset?
Nora in a proportion of patients accelerated brain volume loss begins very early. The problem we have is defining when MS begins. Most people have MS for years before their first symptom or diagnosis.
Generally speaking, can people who have MS have no lesions on MRI. Does the quality of the scan (1.5T v 3T) (flair v regular t2) make a difference?
Yes and yes. MS is a biological disease and you can have MS with a normal MRI. This however is very unusual and occurs early in the disease. And yes, the better the quality of the MRI the better you are able to pick up lesions.
I realise how important general brain health and wellness is for everyone and not just those with MS and have been recommended two excellent books by my GP, Brain Health and XX Brain, both written by Dr Lisa Mosconi. I would be interested to hear your thoughts on what she has to say. As for MS Wellness Clinics, there are many excellent MS Therapy Centres around the country which are doing their best to provide services and therapy’s for people with MS, it is challenging times for them.I belong to the Chilterns MS Centre to which you are a patron and is amongst the largest. Could you perhaps work together to provide the type of wellness service that you have in mind? I’m sure that they would greatly value your input.
Yes, more than willing to help.
Thankyou so much for this. I've never had it explained to me why my walking has deteriorated so much since my diagnosis 6 years ago. I was put straight on to Tysabri and annual MRI's show NEDA, and I've had no relapses but I'm getting worse despite eating well, meditating, exercising as much as I can. I would definitely be interested in an MS Wellness clinic, and it's good to see lots of ideas being suggested.
Wellness clinic with online community included and allowed to participate.
Specific guided exercise programs
Specific diet guided programs
Minimal cost
Education area with resources and that handles individual questions and shares
Blog from participants available
Real people with answers who care
Available resources
Follow up
Timely research, tx options and where to get them with cost attached that includes stem cell information
Assistance with helping families get testing for genetic markers
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.
Very clear and concise - hardly any TLA's (three letter acronyms) so very easy to understand. ;-)
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.
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.