Where you hoping for a blood neurofilament level to tell your neurologist that your MS is stable or getting worse, i.e. as a guide to help with treatment decisions? It is not that simple.
I am 56 female with SPMS. My disability has increased steadily over the past four years.
(probably have an EDSS of 6.5). I have been on Filgolimod since 2010. I was on beta interferon injections from 2005 to 2010).
My neurologist feels the Filgolimod is working as I have no new detectable lesions. He won’t consider any other treatment. My last MRI was 2020.
I need a future with options.
I am looking at HSCT. I’ve been told I won’t qualify for that on the NHS. What’s your view.? I do many alternative therapies such as massage diet exercise meditation et cetera. What are the medical options to consider?
“SARS-CoV-2 can induce HERV-W ENV [which as been linked to MS, if I understand correctly] expression in cells from individuals with symptomatic and severe COVID-19. Rightwards arrow Our data suggest that HERV-W ENV is likely to be involved in pathogenic features underlying symptoms of acute and post-acute COVID.”
With smoldering MS would the use of DMT’s slow the progression of the disease. As reference to the following -
‘Whereas smouldering MS refers to both PIRA and other markers of ongoing end-organ damage, such as progressive brain volume loss, grey matter loss, thalamic atrophy, slowly expanding lesions, raised CSF neurofilament levels, cognitive decline, retinal nerve fibre layer thinning, worsening neurological function using neurological stress tests (walking distance, running speed, hand-eye coordination, balance tests, hand-eye coordination, .... ) and other emerging clinical outcome measures and imaging biomarkers. It is important to realise that you can have a stable EDSS (no PIRA) and you can still be getting worse from smouldering MS. This is why I prefer the term smouldering MS to PIRA and don’t refer to them as synonyms. Smouldering MS is so much more than PIRA’.
Relating to progressive brain volume loss, cognitive decline, grey matter loss et. al the other areas you mentioned? Would DMT’s slow these ares of progression of the disease?
Dr. G: Given the fact that HERV transactivates EBV, have you noticed any incidental improvement in fatigue in any people with MS taking the new Pfizer drug?
When I was Dx'd, they did a spinal tap and drew some CSF.. At the time the doctor told me it was negative for any proteins or filaments.. I had over 100 lesions at that time in my brain but nothing in my cord yet. I am wondering why the spinal fluid would be clear?
Prof G, may I ask what information is derived from NFH results? I read that they are supposed to signify axon loss, not myelin. I have lambda, not kappa paraproteins.
NB. I had to listen three times as your voice is so beautifully soporific that I dozed off...You should record meditation cd's.
I am 56 female with SPMS. My disability has increased steadily over the past four years.
(probably have an EDSS of 6.5). I have been on Filgolimod since 2010. I was on beta interferon injections from 2005 to 2010).
My neurologist feels the Filgolimod is working as I have no new detectable lesions. He won’t consider any other treatment. My last MRI was 2020.
I need a future with options.
I am looking at HSCT. I’ve been told I won’t qualify for that on the NHS. What’s your view.? I do many alternative therapies such as massage diet exercise meditation et cetera. What are the medical options to consider?
Mary-Ann
Thank you for this post.
This is on a separate subject, but do you have any thoughts about the relevance of this article for pwMS?
https://www.medrxiv.org/content/10.1101/2022.01.18.21266111v2
“SARS-CoV-2 can induce HERV-W ENV [which as been linked to MS, if I understand correctly] expression in cells from individuals with symptomatic and severe COVID-19. Rightwards arrow Our data suggest that HERV-W ENV is likely to be involved in pathogenic features underlying symptoms of acute and post-acute COVID.”
With smoldering MS would the use of DMT’s slow the progression of the disease. As reference to the following -
‘Whereas smouldering MS refers to both PIRA and other markers of ongoing end-organ damage, such as progressive brain volume loss, grey matter loss, thalamic atrophy, slowly expanding lesions, raised CSF neurofilament levels, cognitive decline, retinal nerve fibre layer thinning, worsening neurological function using neurological stress tests (walking distance, running speed, hand-eye coordination, balance tests, hand-eye coordination, .... ) and other emerging clinical outcome measures and imaging biomarkers. It is important to realise that you can have a stable EDSS (no PIRA) and you can still be getting worse from smouldering MS. This is why I prefer the term smouldering MS to PIRA and don’t refer to them as synonyms. Smouldering MS is so much more than PIRA’.
Relating to progressive brain volume loss, cognitive decline, grey matter loss et. al the other areas you mentioned? Would DMT’s slow these ares of progression of the disease?
Dr. G: Given the fact that HERV transactivates EBV, have you noticed any incidental improvement in fatigue in any people with MS taking the new Pfizer drug?
When I was Dx'd, they did a spinal tap and drew some CSF.. At the time the doctor told me it was negative for any proteins or filaments.. I had over 100 lesions at that time in my brain but nothing in my cord yet. I am wondering why the spinal fluid would be clear?
Prof G, may I ask what information is derived from NFH results? I read that they are supposed to signify axon loss, not myelin. I have lambda, not kappa paraproteins.
NB. I had to listen three times as your voice is so beautifully soporific that I dozed off...You should record meditation cd's.
Eve