This newsletter explains why people with MS get worse despite having no evident inflammatory disease activity
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!!!
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..?
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.
Thank you for your work 🙏🙏🙏
Wellness clinic YES !
I have just seen your article.. thank you professor Giovannini for the information..does brain atrophy starts one year after the onset?
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.
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?
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.
Wellness clinic with online community included and allowed to participate.
Specific guided exercise programs
Specific diet guided programs
Education area with resources and that handles individual questions and shares
Blog from participants available
Real people with answers who care
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
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.
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.
LOVE the idea of a full MS wellness clinic that collectively presents proven strategies for quality-of-life improvement and gives back some control to those dealing with an unpredictable disease.
What I'd love to see included? Of course, the full gym with trainers and specific MS nutritional aspect, but please consider adding in the wellness therapies of: cryo, near infrared sauna, and intramuscular Vit shots for supplementation. I'd even love to see the option for members to partake in DNA gene mapping for health. I recently did this and it's a game-changer in how I supplement.