Not too ambitious, but idealistic. In the face of a crumbling NHS which is the British system we have all grown up with, your objectives look pretty distant right now. However it is dreamers who change things ultimately. Ambition must outfox the status quo. You want much more than the system can give currently, but that's the only way forward. I've always been an activist (CND as a schoolgirl, Greenham Common as an adult, climate justice now). Everyone tells you, from your parents down, "That's pointless. Why do you bother? Don't go on that demo. You're just embarrassing your friends and family." But change does happen. It takes dreamers and activists to be uncomfortable, do things that embarrass your peers, say things people find difficult to hear and eventually, incrementally, things do start to shift. Like tectonic plates, they often give but it's usually after much 'jostling'.
It has happened in your community. you're talking about "pockets of neurologists" still using escalation and wait-and-watch strategies. But now, many neurologists are more likely to start treating with higher efficacy meds earlier. How long has that taken to change? Looking back; a few years? a decade or so? Looking forward it seems to be so slow when you're trying to change something everyone knows is bad, but doesn't want to face inconvenience to change. The ozone layer is closing at long last because we did something about it and dumped CFCs. The strategies you want to see implemented won't happen overnight, but maybe eventually there will be more effective interventions and the SDsofH will be addressed. Sdsof H are often best addressed at community level. We shouldn't need food banks and warm hubs but it's the people at local level that are setting them up. While councils close leisure centres, people are setting up centres where people can get warm, fed and active. That gives me hope. Our warm hub does grub, activities and even has a string quartet rehearsing weekly. I'm down there once a week when I don't have to take family to medical appointments and I help at a garden in another town where people with anxiety and poor health can meet. What you want to see happen takes huge resources that don't seem to exist right now, but without your determination they won't happen. Plenty more people like you and your colleagues are needed and maybe you'll see these objectives some time, if not soon.,
I love this format. Thank you again for sharing this information with us.
As I smoulder away, I wonder what the chances of being prescribed antivirals and statins are now in England? They would seem to be a very good option for SPMSers who are addressing exercise, HRT, non smoking, intermittent fasting practices etc themselves but can't get hold of the drugs.
ok did a good read through (am a speed reader :) )
based on this not trying amitriptyline (which i havent yet) might be a good call. have been on LDN for 7 months (no real affect on me to be honest so looking to transition off it)
my neurologist yesterday discussed the exact same issues with amitriptyline which is ironic and quite timely - he mentioned the dry mouth, cognition issues and gave me a prescription to try gabapentin (although i had tried lyrica previously and did not like it)
unfortunatley i dont seem to have many other options and he pretty much said the same
gabapentin, duloxetine seem to be the only ones left for my neuropathy in my hands? is there anything else you would usually prescribe / give advice on patients dealing with numbness / tingling / altered sensation in hands (it mainly affects my fingertips)
thank you
also that podcast format was great!
i have 100% backed the EBV hypothesis as it makes the most sense and i think i am a prime example - - ebv infections twice (child and teenager) MS symptoms/diagnosis almost 15 years later to the dot
thankfully my most recent review yesterday with my neuro was NEDA / stable with tysabri and we made the call to keep on it until i move to JC positive or any disease activity rears its ugly head.
Although duloxetine is not meant to be an anticholinergic it does have side effects compatible with a mild to moderate effect on the cholinergic system. But it is a much lower level than that see with the tricyclic antidepressants.
I do have a prescription to gabapentin which my neuro said might help me
Would that be a good place to start before trying cymbalta? There isn’t a lot of info on this stuff outside people like yourself to be honest unlike DMTs where there is significant resources
In the US, I believe it depends how your doctor presents your case. I have been SPMS for some time now and my doctor still wanted me on the Mavenclad so he said he would present my case as RRMS. Not sure this is the best approach. I chose not to go on Mavenclad for other reasons tho
I've seen this in a European country too. Ive a friend that took betaseron for 6 years, eventually worsened - unsure whether rr or sp, was given mavenclad - she now can walk again.
So, it's all down to wheather your neuro is a good un or not?
Ive also seen ppl given copaxone for 8 years and then told ok now you're spms, get onto my siponimod trial.
Its like... why didn't escalate 3 years ago when you saw progression?
How come ppl get low efficiency drugs then be told thst they're spms - go home, nothing we can do now.
I can't either to be honest. I am on my 5th DMD in 8 years and even tho I was Dx'd later in life, I know now i should have been started on a much higher efficacy drug than Tecfidera. Nothing, up to this point, has been effective for me. I am now 65 and the docs are hesitant to prescribe a stronger DMD and the one I did try, Mayzent, caused such a mess of my immune system, I had to stop taking it.. IDK.. seems that once you hit a certain point, you fall off every radar and have a hard time getting any help
Hi Karin, I stopped Avonex after 20 years and my neurologist also wanted to try Mayzent/siponimod. I recall your cautioning me about this and Dr. G also warned me about the worsening of symptoms after discontinuing it and also that the upper trial participant age was 50. Since my blood counts are low, and I have other issues, I’m now smouldering along with no medications for MS. My neuro is good, but I wish I’d seen her 20 years ago! I really understand feeling adrift when no one has anything else to offer. Then this disease seems lonely to me! I saw Anna’s comment. Maybe that’s an option?
Thanks for this presentation. The holistic self-management approach really chimes with me, so despite not bring eligible for DMT, I am reassured by messages re HRT, HIT and fasting. Await future anti-EBV Rx and, for future generations EBV immunisation.
Your opinion on SC vs IV anti-CD20 DMDs (Ocrelizumab). Could SC be potentially better bc gets better in lymph nodes? Or is it just "commercial" move to lower cost.
I don't think there is any big different between IV Vs SC in terms of inflammation, but there is potentially something in relation to end-organ damage and brain volume loss and progression. I suggest reading the following Newsletter.
Thanks for answering! Was just wondering bc with SC administration less drug will get in blood (think cca 40%?) and then only 0,5% of it to CNS. I'm currently in clinical trial with 920mg SC ocrelizumab (+rHuPH20). My CD19 was really low (below ref range) prior 1st dose (no steroids/DMD) so I wonder if this is normal and what it even targets in periphery then.
interesting newsletter. You had touched heavily on this in the last newsletter.. the causation of MS because of EBV infection.. My biggest question is this, is there a test to see one has had EBV in the past? I do not remember ever having had it in the past. There was a study published last year thru one of the Harvard Schools saying the exact same thing about the link between EBV and MS. Also if EBV is absolutely necessary to Dx of MS, is there anything to treat the EBV exclusively? I mean some of these DMTs are scary as hell and it seems if there is something to effectively treat the underlying cause, that might be a better route of attack, no? But the test to prove infection or not, is there such a thing? I have been dx'd with MS since 2015 now but I had one neurologist recently who said he was not convinced that I had MS? This test might help figure me out.. thanks
I have been wondering how many pw/MS that are older develop other autoimmune disorders or issues? I’ve heard what you are saying (in the states) repeatedly. This is what delays diagnoses, and it also leaves us with smouldering MS.
I am not a doctor, but 95% of people have been infected with EBV but not all develop symptoms/mononucleosis. Anyhow I think that you can do an EBV antibody test if you had an infection in the past, IgG level will be high. Again I am not a doctor so I could be wrong, better consult your local physician.
Thanks for this excellent sharing. Two questions/suggestions please
1 About you getting interest and education around Attack MS.
Do you know about the “what your patient is thinking” series in the BMJ? They only rarely accept group articles - but might I suggest involving a new new Patient (to advertise Attack trial) and a much further on patient (eg 60s as below). For me, the clue is in the name of multiple sclerosis – it affects multiple parts of the body , in multiple ways, for different individuals. But lots of both clinicians and non-clinicians have Stereotyped views. It’s sposed to be led by a patient but you could try initiating via patients you know?
2. The highest prevalence for ms in uk occurs in 60-69 yrs age group. We (I’m 60 this year) are likely to have other comorbidities. And we’ve had ms for many years. I’m guessing drug companies not interested in us. So who’s going to lead something which might produce something evidence based ? You were talking about different approaches - why not Co-production- really led by services users / charities. Though that’d need some funding.
Thank you for this update! Much appreciated. It's easier for me to read things, watching is a struggle so it took me a while to get through it.
I particularly found the part about the connection, or rather lack of connection, between MRI activity and worsening disability intesting. I really struggle with understanding it, and the fact that no one really knows how it works is comforting. What I do know, is that all I care about is feeling better, and MRI activity doesn't coincide with when I feel worse.
I try to do everything I can for my brain health, though it's a daily struggle. And I stopped taking Promethazine (anticholinergic). The only things you list that I need to work on are exercise and diet. I'm as active as I can be, but with my dizziness, nausea, exhaustion, pain, and lack of sensation, anything fast and energetic will be hard. Why is it you consider HIIT best?
Thank you for explaining why PWMS should do the keto diet. I'm going to give it a try, but it's going to be tough with my symptoms. It's also going to be hard to get enough fibre. And I'm a vegetarian. Any advice? From Prof G or other PWMS.
Thanks this is great and touches on a lot of things I've been thinking about/observing
Re rehabilitation - it sounds so obvious that it might help, and seems negligent not to offer as a suggestuion at the least if not help and support. Do you know of the MSGym? I'd be interested in your view of the programmes within.
Also interested i bthe energy/microglia aspects - amazingly after sitting on the sofa munching chocs after Christmas (not my usual activity) I found I could make my way upstairs with ease. It's so difficult to pin down what it might be that helped, if ther's somethng nnotable like that. I think it has something to do with being well nourished, in the short term - oer the copurse of the day or evening.
Thank you for this presentation Prof G. As always hugely informative.. Please consider me for all and any trials. Despite doing a lot of what you propose to manage MS I continue to deteriorate pretty quickly. As an otherwise very healthy 43 year old I'm not ready to accept this and I'll give most things a go. In addition to my meds, I do all the fasting, HIIT, sleeping, working etc that I can fit in and who knows where I'd be if I didn't focus so much on all of these 'holistic mgt therapies) but I know I need something else too - is this a BTKi, a simvastatin, metformin, HSTC.. I hope one of these is offered soon. Thanks again.
ZOE is not MS specific, but when a person with MS joins she/he will receive personalised advice. And if enough people with MS join ZOE might be able to give MS specific advice after some time. Why not collaborate with ZOE?
I was diagnosed with RRMS a year ago having had a bout of ON, first in my left and then right eye. MRI with contrast revealed many lesions though I've not had any other obvious symptoms, though I am in a perennial state of terror following each twinge I experience. I am 34. I am now taking Ocrevus and am at one of the top centres in the UK. I adhere to the Wahls protocol (haven't a clue if it is effective) and am HIIT-ing and exercising 7 days a week in the pursuit of accumulating enough marginal gains that I can stave off accelerated decline and look like/remain a healthy person.
I have been reading your blog for the last year and am very grateful for the information, though it places me in a compromising position for the following reasons:
1) Your EBV hypothesis is very convincing but it leaves me wondering how effective Ocrevus in fact is given it most significantly combats focal inflammation and not the smouldering disease, that is the underlying immune response to EBV (albeit I understand its effectiveness may be that it penetrates to the CNS). Should I be worried about the future given I am on Ocrevus despite the assurances I've received?
2) Following this, it seems, of the available treatments, you are less interested in Ocrevus but would recommend Lemtrada or HCST as a first line treatment to address MS and the potential impact of EBV. Given I am in the UK, how can one push their providers to give them either since the guidelines are so restrictive? Or are am I misunderstanding and you approve of Ocrevus?
3) Your blogs are incredibly informative but given this aforementioned powerlessness, how do you suggest one reads what you are saying without being thrown into a state of despair? This isn't an accusatory question, I mean it in an instructive sense: should I read what you are saying as speculative? Alternatively, If it is a call to arms, how do you suggest people put pressure on HCPs without costing their mental health, tackling a seemingly byzantine and intractable NHS?
4) Given everything I've said, do you have any causes for hope for the recently diagnosed who are on high efficacy treatments like Ocrevus, given the current treatment landscape and results soon to come?
Thank you for your time and all your work. And good luck all who are reading this thread.
This was a wonderful format with an incredible amount of information. I’m sure I’m not the sole person with MS who was on interferon beta and was never taken off until “Good news! You’ve plateaued!” They have the worst outcome :( These trials and observations are exciting, particularly the HIV patients with antiretrovirals. I am on a statin at my age and Valtrex. I appreciate the holistic approach, but I truly don’t see anything happening here in the states other than the absolute minimum at best. Unfortunately. I really appreciate your time and effort to get this information and data to us and explain it in a manner we can grasp. Stay well, Dr G!
Hello again Italien- Yep, I was on Betaseron for like 23 years. Switched over to Ocrevus for two years (as we thought my calf deficits were MS) - my doc was on sabatical (sp?) and covid came along, so I stopped O. Turns out calf was mostly non-MS related and has improved greatly- something you don't see with SPMS. And other things too. So yes, I'm sitting here untreated, but with Simvastatin (40 mg not 80) like you too. Also Alpha Lipoic Acid and a low fat no processed food diet for a long time. I'm stable but always on edge for what might be going on anyway that I don't notice. ??? Could write a book. MS sucks. Where in US are you? I'm in Lancaster PA.
Hi Tom, were your calf deficits like dystonia? Just asking. My cervical dystonia is treated with Botox successfully. I was ready to go on an older DMT, such as Tecfidera, but due to blood counts, my neuro won’t prescribe anything. She stated in her opinion an older drug wouldn’t have an effect on brain volume at this point vs the risk. I understand waiting for the other shoe to drop. The most annoying and scary things to me are tremor and now eyesight. Grrr. Tremor starts whenever I exercise and there are no real qphysiotherapists or PM&R doctors anymore. I’m in the So Ca Riverside Co desert. Medical care is simply awful here. (Lots of it is cash only.) I still see my doctors up in Seattle. My urologist there is amazing. She put paid to the fight with Medicare for proper catheters! I guess we’ll keep up our good diets, statins and Valtrex!
I always called it spasms- involuntary contracting and then releasing. I'll try to keep it short, but it's an important story. Spams off and on, both legs, since 2002- only created sleep problems solved in part with baclofen. In 2016, subtle pain in calf-foot, didn't analyze it. But it got progressively more severe thru summer of '20. Leg, outer calf, foot, toes. Then I tripped and ankle turned in 90 degree, thought it'd be bad but didn't notice a difference (because things were already so bad). MS doc gave psuedo prescrip for compounded combo of all the things we take orally. Used small vibrators constantly. Ice packs tucked in sock. Multiple elastic arches in ever changing positions. Then suddenly, things just started improving. Slowly, one remedy was was decreased, then another. The DX's during this? Peroneal neuropathy, PTTD - collapsed arch (had flat feet since 5), inflamed nerve eciting the skin...others. #\$350 for two different orthodics- useless. Exercises in the beginning that made it worse. No pain, no gain!
Today, I limp with caution but very little pain. Peronial muscle is returning. This was not a relapse after 20 years of no releapses. It was not progression that resolved itself. I can tell you the spasms are still there at the same old rate they always have been. BUT, I see now, that any feeling applyed to my my leg or foot initiates spasms. Take away the feeling, the spasm usually goes away. But spams make the toe go up. That causes pain, which creates more spasms. Take off the sneakers- everything stops. Buy larger sneakers? They slip around, got to be very tight- then spams again.
Do you like my little night-mare story?
Anyway- for you: clonazepam .5mg stopped my tremors in 10 minutes. That was in 1996 after a relapse and the tremors totally resolved themselves after a couple years, so I was taking it as needed when i didn't want to shake. They were intention tremors. The Alpha Lipoic Acid does shoe evidence for reducing brain atrophy and is currently in a phase 3 study. It's cheap over-the-counter safe, I'll take it until the study results come out. Good for you anyway. That's it, can't think of anything else. California!? Never been past Chicago. :-)
Hi Tom, you’ve indeed been through a nightmare with this! Baclofen was my go-to med for years even before final diagnosis and then suddenly, after 20+ years, I couldn’t tolerate it in the sense that I became aphasic from it. My spouse flipped because it was like I had a stroke; couldn’t find words, speech etc. so that was off the table. Clonazapam was stopped due to its reclassification. I’m still taking valium (also reclassified) for spasms/bladder, but it doesn’t seem that effective anymore. Thanks for the info on alpha lipoid acid. I appreciate it and I’ll look into it. I’ll try whatever it takes, as long as it’s safe! I’m grateful for any suggestions for us smoulderers! Re PA, my mother’s family emigrated to the Philadelphia area, then her mother eventually settled in Pittsburgh. My mother was the only one that ever left the state! I wish things weren’t so crazy, travel wise, since I’m getting old and I’ve got lots of family out East!
Not too ambitious, but idealistic. In the face of a crumbling NHS which is the British system we have all grown up with, your objectives look pretty distant right now. However it is dreamers who change things ultimately. Ambition must outfox the status quo. You want much more than the system can give currently, but that's the only way forward. I've always been an activist (CND as a schoolgirl, Greenham Common as an adult, climate justice now). Everyone tells you, from your parents down, "That's pointless. Why do you bother? Don't go on that demo. You're just embarrassing your friends and family." But change does happen. It takes dreamers and activists to be uncomfortable, do things that embarrass your peers, say things people find difficult to hear and eventually, incrementally, things do start to shift. Like tectonic plates, they often give but it's usually after much 'jostling'.
It has happened in your community. you're talking about "pockets of neurologists" still using escalation and wait-and-watch strategies. But now, many neurologists are more likely to start treating with higher efficacy meds earlier. How long has that taken to change? Looking back; a few years? a decade or so? Looking forward it seems to be so slow when you're trying to change something everyone knows is bad, but doesn't want to face inconvenience to change. The ozone layer is closing at long last because we did something about it and dumped CFCs. The strategies you want to see implemented won't happen overnight, but maybe eventually there will be more effective interventions and the SDsofH will be addressed. Sdsof H are often best addressed at community level. We shouldn't need food banks and warm hubs but it's the people at local level that are setting them up. While councils close leisure centres, people are setting up centres where people can get warm, fed and active. That gives me hope. Our warm hub does grub, activities and even has a string quartet rehearsing weekly. I'm down there once a week when I don't have to take family to medical appointments and I help at a garden in another town where people with anxiety and poor health can meet. What you want to see happen takes huge resources that don't seem to exist right now, but without your determination they won't happen. Plenty more people like you and your colleagues are needed and maybe you'll see these objectives some time, if not soon.,
I love this format. Thank you again for sharing this information with us.
As I smoulder away, I wonder what the chances of being prescribed antivirals and statins are now in England? They would seem to be a very good option for SPMSers who are addressing exercise, HRT, non smoking, intermittent fasting practices etc themselves but can't get hold of the drugs.
I subscribe to this.
Re: " As I smoulder away, I wonder what the chances of being prescribed antivirals and statins are now in England?"
I suspect not as we need to complete studies that show the work.
You mentioned people getting off anticholinergic drugs and not being prescribed them, why is that?
Does that class of drugs include Amitriptyline, cymbalta, or gabbapentin?
If so what other options are there to help with day to day symptoms (Eg for me it’s my hands with altered sensation and cramps)
I suggest you read:
https://gavingiovannoni.substack.com/p/amitriptyline-the-neurologists-dirty
and
https://gavingiovannoni.substack.com/p/brain-health-how-important-is-it#details
ok did a good read through (am a speed reader :) )
based on this not trying amitriptyline (which i havent yet) might be a good call. have been on LDN for 7 months (no real affect on me to be honest so looking to transition off it)
my neurologist yesterday discussed the exact same issues with amitriptyline which is ironic and quite timely - he mentioned the dry mouth, cognition issues and gave me a prescription to try gabapentin (although i had tried lyrica previously and did not like it)
unfortunatley i dont seem to have many other options and he pretty much said the same
gabapentin, duloxetine seem to be the only ones left for my neuropathy in my hands? is there anything else you would usually prescribe / give advice on patients dealing with numbness / tingling / altered sensation in hands (it mainly affects my fingertips)
thank you
also that podcast format was great!
i have 100% backed the EBV hypothesis as it makes the most sense and i think i am a prime example - - ebv infections twice (child and teenager) MS symptoms/diagnosis almost 15 years later to the dot
thankfully my most recent review yesterday with my neuro was NEDA / stable with tysabri and we made the call to keep on it until i move to JC positive or any disease activity rears its ugly head.
after doing quite a bit of research im leaning more to Cymbalta as a method of action to help the hand/finger neuropathy
i dont beleive it is an anticholinergic from what i have read
Although duloxetine is not meant to be an anticholinergic it does have side effects compatible with a mild to moderate effect on the cholinergic system. But it is a much lower level than that see with the tricyclic antidepressants.
Thanks Prof G.
I do have a prescription to gabapentin which my neuro said might help me
Would that be a good place to start before trying cymbalta? There isn’t a lot of info on this stuff outside people like yourself to be honest unlike DMTs where there is significant resources
Thanks will give them a good read
I have question:
1. Why isnt mavenclad an option for spms but siponimod is?
Maven lad has not been tested in what we would call a typically SPMS population and hence is not licensed for progressive MS.
I see. I thought it was licensed in the USA for spms. My bad.
Anna you're correct but only because in the US the FDA automatically include active SPMS (and CIS) with approvals for RRMS:
https://practicalneurology.com/articles/2020-feb/pointcounterpoint-food-and-drug-administration-multiple-sclerosis-categorization-changes
Whereas the EMA require a separate application. As they do (and the FDA still do) for active PPMS.
Maybe one day things will change...
In the US, I believe it depends how your doctor presents your case. I have been SPMS for some time now and my doctor still wanted me on the Mavenclad so he said he would present my case as RRMS. Not sure this is the best approach. I chose not to go on Mavenclad for other reasons tho
Ty for your response.
I've seen this in a European country too. Ive a friend that took betaseron for 6 years, eventually worsened - unsure whether rr or sp, was given mavenclad - she now can walk again.
So, it's all down to wheather your neuro is a good un or not?
Ive also seen ppl given copaxone for 8 years and then told ok now you're spms, get onto my siponimod trial.
Its like... why didn't escalate 3 years ago when you saw progression?
How come ppl get low efficiency drugs then be told thst they're spms - go home, nothing we can do now.
I just cant get my head around some things.
I can't either to be honest. I am on my 5th DMD in 8 years and even tho I was Dx'd later in life, I know now i should have been started on a much higher efficacy drug than Tecfidera. Nothing, up to this point, has been effective for me. I am now 65 and the docs are hesitant to prescribe a stronger DMD and the one I did try, Mayzent, caused such a mess of my immune system, I had to stop taking it.. IDK.. seems that once you hit a certain point, you fall off every radar and have a hard time getting any help
Hi Karin, I stopped Avonex after 20 years and my neurologist also wanted to try Mayzent/siponimod. I recall your cautioning me about this and Dr. G also warned me about the worsening of symptoms after discontinuing it and also that the upper trial participant age was 50. Since my blood counts are low, and I have other issues, I’m now smouldering along with no medications for MS. My neuro is good, but I wish I’d seen her 20 years ago! I really understand feeling adrift when no one has anything else to offer. Then this disease seems lonely to me! I saw Anna’s comment. Maybe that’s an option?
I wish you well!!💕
I'm sorry to hear that.
It does seem that way.
They wouldn't leave ppl with cancer "get on with it" so i don't understand why we get to.
I would try and get tenofovir since the tenofovir study "folded".
Thanks for this presentation. The holistic self-management approach really chimes with me, so despite not bring eligible for DMT, I am reassured by messages re HRT, HIT and fasting. Await future anti-EBV Rx and, for future generations EBV immunisation.
Your opinion on SC vs IV anti-CD20 DMDs (Ocrelizumab). Could SC be potentially better bc gets better in lymph nodes? Or is it just "commercial" move to lower cost.
I don't think there is any big different between IV Vs SC in terms of inflammation, but there is potentially something in relation to end-organ damage and brain volume loss and progression. I suggest reading the following Newsletter.
https://gavingiovannoni.substack.com/p/case-study-ocrelizumab-or-ofatumumab
Thanks for answering! Was just wondering bc with SC administration less drug will get in blood (think cca 40%?) and then only 0,5% of it to CNS. I'm currently in clinical trial with 920mg SC ocrelizumab (+rHuPH20). My CD19 was really low (below ref range) prior 1st dose (no steroids/DMD) so I wonder if this is normal and what it even targets in periphery then.
interesting newsletter. You had touched heavily on this in the last newsletter.. the causation of MS because of EBV infection.. My biggest question is this, is there a test to see one has had EBV in the past? I do not remember ever having had it in the past. There was a study published last year thru one of the Harvard Schools saying the exact same thing about the link between EBV and MS. Also if EBV is absolutely necessary to Dx of MS, is there anything to treat the EBV exclusively? I mean some of these DMTs are scary as hell and it seems if there is something to effectively treat the underlying cause, that might be a better route of attack, no? But the test to prove infection or not, is there such a thing? I have been dx'd with MS since 2015 now but I had one neurologist recently who said he was not convinced that I had MS? This test might help figure me out.. thanks
I have been wondering how many pw/MS that are older develop other autoimmune disorders or issues? I’ve heard what you are saying (in the states) repeatedly. This is what delays diagnoses, and it also leaves us with smouldering MS.
I am not a doctor, but 95% of people have been infected with EBV but not all develop symptoms/mononucleosis. Anyhow I think that you can do an EBV antibody test if you had an infection in the past, IgG level will be high. Again I am not a doctor so I could be wrong, better consult your local physician.
Thanks for this excellent sharing. Two questions/suggestions please
1 About you getting interest and education around Attack MS.
Do you know about the “what your patient is thinking” series in the BMJ? They only rarely accept group articles - but might I suggest involving a new new Patient (to advertise Attack trial) and a much further on patient (eg 60s as below). For me, the clue is in the name of multiple sclerosis – it affects multiple parts of the body , in multiple ways, for different individuals. But lots of both clinicians and non-clinicians have Stereotyped views. It’s sposed to be led by a patient but you could try initiating via patients you know?
2. The highest prevalence for ms in uk occurs in 60-69 yrs age group. We (I’m 60 this year) are likely to have other comorbidities. And we’ve had ms for many years. I’m guessing drug companies not interested in us. So who’s going to lead something which might produce something evidence based ? You were talking about different approaches - why not Co-production- really led by services users / charities. Though that’d need some funding.
Thanks and Best wishes
--
Thank you for this update! Much appreciated. It's easier for me to read things, watching is a struggle so it took me a while to get through it.
I particularly found the part about the connection, or rather lack of connection, between MRI activity and worsening disability intesting. I really struggle with understanding it, and the fact that no one really knows how it works is comforting. What I do know, is that all I care about is feeling better, and MRI activity doesn't coincide with when I feel worse.
I try to do everything I can for my brain health, though it's a daily struggle. And I stopped taking Promethazine (anticholinergic). The only things you list that I need to work on are exercise and diet. I'm as active as I can be, but with my dizziness, nausea, exhaustion, pain, and lack of sensation, anything fast and energetic will be hard. Why is it you consider HIIT best?
Thank you for explaining why PWMS should do the keto diet. I'm going to give it a try, but it's going to be tough with my symptoms. It's also going to be hard to get enough fibre. And I'm a vegetarian. Any advice? From Prof G or other PWMS.
I'd be in most trials, and just started 2.
Thanks again!
Thanks this is great and touches on a lot of things I've been thinking about/observing
Re rehabilitation - it sounds so obvious that it might help, and seems negligent not to offer as a suggestuion at the least if not help and support. Do you know of the MSGym? I'd be interested in your view of the programmes within.
Also interested i bthe energy/microglia aspects - amazingly after sitting on the sofa munching chocs after Christmas (not my usual activity) I found I could make my way upstairs with ease. It's so difficult to pin down what it might be that helped, if ther's somethng nnotable like that. I think it has something to do with being well nourished, in the short term - oer the copurse of the day or evening.
Any thoughts I'd be delighted to hear
Thanks a million as always
Thank you for this presentation Prof G. As always hugely informative.. Please consider me for all and any trials. Despite doing a lot of what you propose to manage MS I continue to deteriorate pretty quickly. As an otherwise very healthy 43 year old I'm not ready to accept this and I'll give most things a go. In addition to my meds, I do all the fasting, HIIT, sleeping, working etc that I can fit in and who knows where I'd be if I didn't focus so much on all of these 'holistic mgt therapies) but I know I need something else too - is this a BTKi, a simvastatin, metformin, HSTC.. I hope one of these is offered soon. Thanks again.
After listening, If we have to pick a place to start think we should investigate Tenofovir for MS
https://www.pnas.org/doi/10.1073/pnas.2002392117
Thank you for all your amazing information. I watched your YouTube twice and I’m going to watch it again to make sure I don’t mis anything.
It is as if you are, single handed, trying to turn the MS tanker around.
Do you think People with MS could benefit from the ZOE health study?
Tim Spector and Sarah Berry
https://www.instagram.com/tv/CnkWrWEp3kt/?igshid=YmMyMTA2M2Y=
Yes, they will but to the best of my knowledge it is not MS specific.
ZOE is not MS specific, but when a person with MS joins she/he will receive personalised advice. And if enough people with MS join ZOE might be able to give MS specific advice after some time. Why not collaborate with ZOE?
Very excellent. Thank you.
Hello --
I was diagnosed with RRMS a year ago having had a bout of ON, first in my left and then right eye. MRI with contrast revealed many lesions though I've not had any other obvious symptoms, though I am in a perennial state of terror following each twinge I experience. I am 34. I am now taking Ocrevus and am at one of the top centres in the UK. I adhere to the Wahls protocol (haven't a clue if it is effective) and am HIIT-ing and exercising 7 days a week in the pursuit of accumulating enough marginal gains that I can stave off accelerated decline and look like/remain a healthy person.
I have been reading your blog for the last year and am very grateful for the information, though it places me in a compromising position for the following reasons:
1) Your EBV hypothesis is very convincing but it leaves me wondering how effective Ocrevus in fact is given it most significantly combats focal inflammation and not the smouldering disease, that is the underlying immune response to EBV (albeit I understand its effectiveness may be that it penetrates to the CNS). Should I be worried about the future given I am on Ocrevus despite the assurances I've received?
2) Following this, it seems, of the available treatments, you are less interested in Ocrevus but would recommend Lemtrada or HCST as a first line treatment to address MS and the potential impact of EBV. Given I am in the UK, how can one push their providers to give them either since the guidelines are so restrictive? Or are am I misunderstanding and you approve of Ocrevus?
3) Your blogs are incredibly informative but given this aforementioned powerlessness, how do you suggest one reads what you are saying without being thrown into a state of despair? This isn't an accusatory question, I mean it in an instructive sense: should I read what you are saying as speculative? Alternatively, If it is a call to arms, how do you suggest people put pressure on HCPs without costing their mental health, tackling a seemingly byzantine and intractable NHS?
4) Given everything I've said, do you have any causes for hope for the recently diagnosed who are on high efficacy treatments like Ocrevus, given the current treatment landscape and results soon to come?
Thank you for your time and all your work. And good luck all who are reading this thread.
This was a wonderful format with an incredible amount of information. I’m sure I’m not the sole person with MS who was on interferon beta and was never taken off until “Good news! You’ve plateaued!” They have the worst outcome :( These trials and observations are exciting, particularly the HIV patients with antiretrovirals. I am on a statin at my age and Valtrex. I appreciate the holistic approach, but I truly don’t see anything happening here in the states other than the absolute minimum at best. Unfortunately. I really appreciate your time and effort to get this information and data to us and explain it in a manner we can grasp. Stay well, Dr G!
Hello again Italien- Yep, I was on Betaseron for like 23 years. Switched over to Ocrevus for two years (as we thought my calf deficits were MS) - my doc was on sabatical (sp?) and covid came along, so I stopped O. Turns out calf was mostly non-MS related and has improved greatly- something you don't see with SPMS. And other things too. So yes, I'm sitting here untreated, but with Simvastatin (40 mg not 80) like you too. Also Alpha Lipoic Acid and a low fat no processed food diet for a long time. I'm stable but always on edge for what might be going on anyway that I don't notice. ??? Could write a book. MS sucks. Where in US are you? I'm in Lancaster PA.
Hi Tom, were your calf deficits like dystonia? Just asking. My cervical dystonia is treated with Botox successfully. I was ready to go on an older DMT, such as Tecfidera, but due to blood counts, my neuro won’t prescribe anything. She stated in her opinion an older drug wouldn’t have an effect on brain volume at this point vs the risk. I understand waiting for the other shoe to drop. The most annoying and scary things to me are tremor and now eyesight. Grrr. Tremor starts whenever I exercise and there are no real qphysiotherapists or PM&R doctors anymore. I’m in the So Ca Riverside Co desert. Medical care is simply awful here. (Lots of it is cash only.) I still see my doctors up in Seattle. My urologist there is amazing. She put paid to the fight with Medicare for proper catheters! I guess we’ll keep up our good diets, statins and Valtrex!
I always called it spasms- involuntary contracting and then releasing. I'll try to keep it short, but it's an important story. Spams off and on, both legs, since 2002- only created sleep problems solved in part with baclofen. In 2016, subtle pain in calf-foot, didn't analyze it. But it got progressively more severe thru summer of '20. Leg, outer calf, foot, toes. Then I tripped and ankle turned in 90 degree, thought it'd be bad but didn't notice a difference (because things were already so bad). MS doc gave psuedo prescrip for compounded combo of all the things we take orally. Used small vibrators constantly. Ice packs tucked in sock. Multiple elastic arches in ever changing positions. Then suddenly, things just started improving. Slowly, one remedy was was decreased, then another. The DX's during this? Peroneal neuropathy, PTTD - collapsed arch (had flat feet since 5), inflamed nerve eciting the skin...others. #\$350 for two different orthodics- useless. Exercises in the beginning that made it worse. No pain, no gain!
Today, I limp with caution but very little pain. Peronial muscle is returning. This was not a relapse after 20 years of no releapses. It was not progression that resolved itself. I can tell you the spasms are still there at the same old rate they always have been. BUT, I see now, that any feeling applyed to my my leg or foot initiates spasms. Take away the feeling, the spasm usually goes away. But spams make the toe go up. That causes pain, which creates more spasms. Take off the sneakers- everything stops. Buy larger sneakers? They slip around, got to be very tight- then spams again.
Do you like my little night-mare story?
Anyway- for you: clonazepam .5mg stopped my tremors in 10 minutes. That was in 1996 after a relapse and the tremors totally resolved themselves after a couple years, so I was taking it as needed when i didn't want to shake. They were intention tremors. The Alpha Lipoic Acid does shoe evidence for reducing brain atrophy and is currently in a phase 3 study. It's cheap over-the-counter safe, I'll take it until the study results come out. Good for you anyway. That's it, can't think of anything else. California!? Never been past Chicago. :-)
Hi Tom, you’ve indeed been through a nightmare with this! Baclofen was my go-to med for years even before final diagnosis and then suddenly, after 20+ years, I couldn’t tolerate it in the sense that I became aphasic from it. My spouse flipped because it was like I had a stroke; couldn’t find words, speech etc. so that was off the table. Clonazapam was stopped due to its reclassification. I’m still taking valium (also reclassified) for spasms/bladder, but it doesn’t seem that effective anymore. Thanks for the info on alpha lipoid acid. I appreciate it and I’ll look into it. I’ll try whatever it takes, as long as it’s safe! I’m grateful for any suggestions for us smoulderers! Re PA, my mother’s family emigrated to the Philadelphia area, then her mother eventually settled in Pittsburgh. My mother was the only one that ever left the state! I wish things weren’t so crazy, travel wise, since I’m getting old and I’ve got lots of family out East!
Cheers, Tom! We limp on!