The Attack-MS trial aims to approach the treatment of MS like we treat stroke. In stroke, minutes and hours make a difference. In MS, we think days and weeks matter.
This sounds almost identical to my story except I wasn't lucky enough to have a neuro like yourself to give me the benefit of the doubt. I believe that a lot of it comes down to education of newly diagnosed patients. I knew nothing about MS when I was diagnosed, I didn't know what a relapse was or what any of the many symptoms could be. In my head the tingling, sensory symptoms etc were a normal part of it so didn't pay any attention to them. At the time I thought I was 'lucky' as I didn't have anything that I felt needed reported to a doctor. Denial also played a big part in it but looking back I had multiple relapses over the years although none of it counts as it wasn't recorded. I am so happy that people coming down the line will have better access to treatment but please don't underestimate the difference the education and information provide you makes to people!
Early treatment would have been a loud "YES" and I would encourage others.
This early treatment would be enormous as in health and well being instead of left in the woods as I was still am but understand more as lots of literature etc.
Preventive medicine early is key and shines a light of hope for CIS.
Love the Attack-MS idea the only issue is patients
Eg I’m on natalizumub myself. 36 year old male. Had my first main attack in May 2021 was on Tysabri in Sept (diagnosed in July) the hold up was trying to understand if it was carpal tunnel or something else (had a stomach hug and hand neuropathy) I had no clue what it was and Did not think or understand MS at the time.
I know that I had neck lehrmittes sign at least 12 months prior, maybe more + heat issues.
So, if patients themselves are unaware or putting off symptoms then I don’t know how well it will work. We need better education in the public for MS as most people don’t know what it is (I didn’t)
15 mths on Tysabri and stable, no new symptoms and have full mobility just the occasional lehrmittes sign and constant hand neuropathic symptoms.
Good point re public education Christian. You know all those adverts for acting fast with signs of stroke? Hands, face, speech? Something similar with MS. Not seconds and minutes (!) but days and weeks count.
I agree. What's clear is that so many have experienced quite worrying levels of gaslighting or disregard by GP's for what are sometimes really obvious neurological symptoms. I can't imagine how hard a GP's job actually is and not trying to bash a very strained system, but things similar to the stroke information, as Annonie Mouse mentions, would be very useful. I had sudden numbness down one side of body and lopsided walking, shaky hand and weird cognitive feelings that time and space were moving at a different pace, amongst others, and was offered a telephone call (this was 8 years ago so not to do with Covid times!) in which I was told I had Labyrinthitis and prescribed anti-psychotics for dizzy spells. A paramedic friend said neurological symptoms like this should have triggered an immediate face:face appointment as a minimum and escalation as could be Stroke!! So maybe some kind of education for Public and GP's to spot wider array of neurological symptoms?
Same here. CIS in 2013 was rescanned in 2017 with a brain like a constellation (post 2 flares of EBV) and then during the 6 months they decided what to do with me, 4 disabling relapses, started on Tysabri in early 2018 - NEIDA since then but unsure how to prevent further deterioration.
You asked: Would I want to take part in a study like this? Yes I would.
With what’s known now that is.
My own case is pretty similar to your case study but from maybe 20 years previous to your patient
As it happens, I was personally in charge of authorising exceptional referrals which included interferon – when it had just come out
I decided then that the evidence was so poor (for disability) that I didn’t want to even argue to take it
And I’ve generally avoided having contact with MS doctors and nurses - since they (sorry) weren’t helpful.
I will now do what you say about reporting relapses.
Since I’ve got multimorbidity it can be difficult to disentangle what’s ms and what’s the other stuff. I’m sure I’m not the only one in this situation!
But what I want to ask please is whether you’re really totally disinterested in all those thousands of people who have a history of MS and are perhaps being under treated? What best to do for us?
I understand that the NHS is under ridiculous pressure at the moment but if I continue to use myself as an example, I have only had three MRIs in 30 years of MS. The MRI results take between three and six months to come back to me. So I’m probably progressing between MRI and getting the results.
I was recently eventually told that im “eligible” for the least effective treatments. But I’m still waiting to hear anything specific about that. I am currently arguing for at least a small reversal of the pyramid. But, unsurprisingly, I’ve heard nothing back about that
The real point of my question here is are all of us have not just been diagnosed being forgotten? Ignored? or simply not considered important for the clinicians?
I understand this a more difficult question . but that’s surely not a reason to not even try to answer it
Thanks so much for your work. About subscribing, it is quite a lot of money for those of us who aren’t able to work. Have you thought that maybe you ld get more people subscribing if it was slightly less? Please don’t think that I’m saying here that your work is not worth money! It’s extremely valuable!
But especially in the cost of living crisis, there are lots of us of us who cant work who have to prioritise heating, heating, charging mobility scooters and wheelchairs
Caroline, I can empathize and I am in the states. In over 30 years, MRIs for me were not just hit and miss, but because of complications with a cochlear implanted device beginning in 2003, I need sedation for any MRIs. No one wants to do them. Too complicated. So I’m on my own. Best to you in the new year.
A big thank you Caroline. This is a lovely place to be. I don’t feel nearly as isolated. Over the years, the disease can be lonely and f2f meetings are difficult to fit everyone’s needs where I live. Viva la Selfie, but not by ourselves! 💕
Reading this post and the replies makes me feel like an alien or time traveller. I was severely disabled by every symptom of MS for 30 years; dozens of NHS doctors told me I was making it all up. The NHS refused to let me see a neurologist or have an MRI scan. I only have a diagnosis now because eventually I managed to diagnose myself and go private.
Honestly, after decades of NHS brainwashing and 'severe cerebral atrophy', I don't have a clue how to recognise relapses or believe they matter.
I definitely agree that everyone should have access to whatever treatments they choose. I hope this trial allows self-referrals, that's the only thing that would have saved me.
Yes, I agree that cladribine should be a first line DMT. When I was diagnosed, figolimod was the new kid on the block and considered to be a great choice by my neurologists in the US. It was very difficult to sway my insurer to see things the same way. The usual course of less-effective DMTs for one year minimum is what is usually required by insurance companies here. I was lucky in that my neuro went to the mat for me and I was able to start with Gilenya. My main motivation was that it was new and that it was not an injection. I really had no idea what MS was or what it required. An ER visit after my first relapse suggested I had a stroke. After that was ruled out, I had to wait six months to get in to see a neurologist. I was given information to read and decide which DMT I would like to try and I chose Gilenya. I was told that was a good choice because if I moved to the front of the line and used Tysabri first, I’d have no where to go if Gilenya didn’t work out.
I now have a new neuro and he prescribed cladribine and it has been an improvement for me. I did not realize I was having breakthrough symptoms while on Gilenya. I hope it becomes a first-line choice for pwMS in the future.
I also think educating a new MS patients would be very helpful. Recognizing a relapse is still confusing to me.
It’s too late for me, but you ask specifically would I participate in such a clinical trial, my answer is a resounding absolutely! I have no doubt that taking Avonex for 20 years helped me, but heaven knows how long I’ve had MS, and I don’t think that was enough, particularly for saving cognition. My story is similar to so many. Early on, I was actually embarrassed to tell any physician of these wild symptoms that would resolve seemingly magically. I finally called a neurologist I knew through work and described the symptoms. The very first thing he asked was my age (38, and I’d had my second child, via c-section, at 34. First major surgery ever, and I never recovered.). MS was his first guess. But even with abnormal EMGs and MRIs early on, I wasn’t diagnosed until I was 42. It took five years and a bout of optic neuritis to get Avonex started. The interferons were the sole option. The concept of treating MS as we treat stroke crisis is an excellent idea. When I had a critical event that ended my L sided hearing, it was almost impossible to sort it out from stroke v MS. And no one even tried, because they didn’t take it seriously. So I say, go for it. Thanks Prof G. I’m grateful for your novel approaches to this devastating disease. I’m sorry you got flu! Wishing you and all here the best new year!
So many women seem to experience onset after birth or shortly after. I realise that pregnancy and birth are a huge strain on the body and immune system, but I’ve often wondered what neurologists think about this? What the role of pregnancy hormones etc?
I would love for this to be further explored too, Karen. Before I knew I had MS, I conceived my first child without any fertility treatment and don't think I had any symptoms post-birth (if I did, they must have been minor). However my physical symptoms became very obvious after commencing fertility treatment to conceive my second child, and MS was diagnosed shortly afterwards. I've since learnt there's thought to be a sevenfold risk of relapse following unsuccessful IVF treatment for women with MS; I wish serious money would be invested in exploring the role between hormones and MS, because whilst not all women undergo fertility treatment, lots of women become pregnant - and all women go through the menopause! https://mstrust.org.uk/latest/research/ms-more-active-after-assisted-reproduction-technology-art
I’ve often heard that the disease seems to emerge after an accident, illness, surgery, childbirth. The strains of a 2 week overdue pregnancy, continued work and then a c-section definitely knocked me down. I lost my hormones at 42 (chemo) the year I was diagnosed, but I recall prior thinking periods affected some of those weird RR symptoms.
Yes, I assumed that it might be the strain/stress to the body during pregnancy or childbirth being a massive toll and impact. If the strain of this equates to a significant illness in terms of impact to the body, would it reactivate EBV for example?
For me personally, I had a lot of sleeplessness post birth, with my baby waking upwards of 20 times a night for two years and then another birth with the same pattern. So really 4 years of extremely poor sleep/catnapping. Diagnosed 3 years post first birth, 1 year post second birth with first visible lesion MRI. I wondered if that was the final trigger alongside the context of other background factors.
Hormones have had an enormous impact during symptomatic stages, which was obvious each month when there was a very clear cyclical exacerbation of symptoms. I ended up taking the birth control pill in order to help manage that impact to MS.
Karen and Martina, I can’t even imagine the stress of IVF, having watched several friends go through the process. Karen, your description of the abject exhaustion of those years is so clear, it seems like yesterday. After the section, the baby had issues with over nursing and keeping milk down, so I’d be up all night, often weeping. The milk was chucked up and I was dry. She was on a nebulizer for asthma by 10 months for severe allergies. To boot, she flung herself in our bed until she was 5. And I had two other children! I didn’t recognize this as high stress, while I worsened physically. The IVF research is telling re hormones.
I was diagnosed in 2005, 5 years after what I later realised was my second relapse. I wasn’t offered any DMTs, and now classed as SPMS. Why do medics assume that people know what an MS relapse is?
I certainly didn’t. I was just given a diagnosis and went home to cry.
Some guidance and support would have been welcome. I hope the situation is better now for those who are newly diagnosed..
This is why I am lobbying Merck and Biogen, the manufacturers of cladribine and natalizumab, to apply to the MHRA for label changes to allow us to use these agents first-line in patients with active MS. Do you agree with me?
Yes! Absolutely no reason why they shouldn't be offered.
Isn't that the point of Chariot MS trial, generate evidence and proof that Cladribine can significantly reduce new relapses in the upper limb and then NICE might allow it to be prescribed
I totally fail to understand why when SPMS without any more relapses , which then seems exactly like PPMS is not indicted as suitable for PPMS DMTs …. Why are they not deemed effective .
Back in 2014 when I saw this patient there were no treatments licensed for SPMS. Now we have siponimod. The reason is that when trials were done in pwSPMS we designed the studies badly. Now that we understand progressive MS all DMTs that work in RRMS will work in SPMS; all you have to do is design your trials to be longer and event driven.
But still unsure how I personally would qualify for siponimod ….when I personally saw you for a one off second opinion consultation it was certainly not available . There are still caveats around it aren’t there ? Perhaps I need to find a consultant again .
Brilliant newsletter and Attack MS approach sounds like the way to go. With the right information at the get-go I would totally sign up for this as a new patient.
Regarding flagging new symptoms: I agree with Christian that as new pwMS it is extremely hard to know what is a symptom of MS, no one tells you what might happen or what to look out for. In addition, determining what is new, what is reoccurring or what is evolving is hard to know as a lay person, likewise what is attributable to non-MS causes.
I feel that it’s probably just as hard for a neurologist to tell and so possibly this is why only the very obvious MS relapses are logged.
Symptoms like brain fog, chronic fatigue, aches and stiffness or RLS, or bowel and bladder problems, can be dismissed as ‘the normal strains of being a parent’ for example. It’s very easy to be gaslit here as a patient, or be told to watch and wait. Or wait until the two year MRI! So many pwMS are diagnosed late because their individual symptoms were attributed to various other causes rather than assessing the patient over time as a whole and seeing the patterns.
Going back to patients understanding their own MS symptoms; It’s hard to identify what a symptom is when you’ve never experienced it before, for example mild spasticity in the limbs where your limb feels like it’s being pulled or tightened inwards - how can a new feeling like this be identified with the correct diagnostic term, when it happened to me I didn’t know what it was or if it was a ‘known thing’. MS is full of these weird sensations and it would be amazing to have a patient manual, where you can look up the sensation or identify a description of what you are feeling and what that feeling is called medically. This would be more empowering for the pwMS, to discuss with a health care professional knowing they have identified or clarified the ‘feelings’ somewhat. I’ve had moments where I can’t comprehend written words for example, I’ve had years of weird momentary ‘rushing’ sensations which start in my feet and end in my head with lightheadedness, triggered by sudden noise and flight or fight response - but I don’t know what that name is or what it means! Without the name it’s hard to clarify or communicate it, it has no gravitas.
MS is not a single diagnosis but under the umbrella of MS there sits the need for many further diagnosis for the multitude of evolving symptoms. So as we can’t see our neurologists frequently, we need as pwMS some more resources like your newsletters to try to navigate what MS feels like, what does nerve damage feel like and who do we tell and what can we expect in terms of speed of escalation?
With MRI’s now reducing to once every two years, on top of just one yearly 5 minute phone consultation, it’s going to be difficult for pwMS to cover their years worth of symptoms. The most obvious ones will naturally float to the top and all these many other important ‘lesser’ or more difficult to quantify symptoms will be lost or overlooked or ignored. So this incomplete picture will impact the advice and support they get for treatments.
What about some kind of online patient symptom reporter/tracker that the patient inputs in real time and the neurologist and GP can be assigned to, to build a yearly picture prior to the yearly appointment we are allocated, or to flag a new emerging symptom that might be significant?
Sorry such a long response but one question; with a high efficiency DMD early on what is the average onset of SPMS compared to no DMD? Do all pwMS eventually become progressive? I know you’ve spoken about MS as one disease but I still don’t understand these stages.
Many thanks and a very Happy New Year to you Prof G!
“Symptoms like….can be dismissed as ‘the normal strains of being a parent’ for example.”
Karen, your comment is very informative. As I aged, I got terribly tired (and still do) of so much being attributed to “normal aging”. It is demoralizing, since many symptoms have existed for decades. Wishing you well. 💕
Another informative post cast, thank you Prof Giovannoni. But I feel like crying now I've listened to it and read some of the comments. I feel my MS is probably not being handled very well and wish I had a neurologist like you. I still have no personal notion of what a relapse is despite telling clinicians this. I am therefore on the 'wait and see' list despite reporting increasing symptoms. When I phoned the neurologist nurse to say I was experiencing tingling in my right foot (as opposed to the affected left side) I was told not to worry about it, so I don't suppose it has been recorded. I won't go into my whole story but feel very frustrated by my (lack of) treatment and fear that irreversible damage is occurring without medication.
Thinking of others, I think this initiative sounds like an excellent idea and could save a lot of difficulties in the long run. The more potential damage can be stopped early, the better it is both for the patient and their families and the less strain they will put on the NHS and social care as a result as the years go by. Win-win!
Good podcast Prof G, I really enjoyed listening to it. Sounds very similar to my highly active rapidly evolving RRMS diagnosis in 2014! I still remember the radiographer in Edinburgh asking me if I was sure I hadn't had symptoms for much longer than I thought because according to him my brain told him something different.
Fortunately my neurologist agreed and I started Tysabri as soon as I was able to take my diagnosis in, diagnosed 1st August 2014, started Tysabri before my birthday on 30 September 2014 which I'm so thankful for but my EDSS has been 6.0 since the start :-(
To answer your question I would always recommend starting a DMD as soon as possible and if joining a trial to get it had been necessary I would have considered it :-)
Keep up your good work Prof G, it makes sense to me living with MS, thank you for your work, I appreciate it. Karen
I'm fairly sure that if a) treatments were easily available at diagnosis (2001), b) that I hadn't gone a long time with no treatment (2008-2012) because I hadn't had an mri since diagnosis. I would still be working instead of having to lay down after cleaning the bathroom. I am finally seeing my neuro after more than 3 years in March after contacting PALS because of a mistake made during ocrevus treatment (I was prescribed half dose despite it being my second full dose). I had a change from tysabri to ocrevus without seeing him because I had been getting ever more severe infusion reactions with tysabri after 9 years.
Such a sad story as there are many. Hope this person doesn't blame himself for not pushing his neurologist more to get treatment. Our brain will always tell us we can't be that sick, we won't lose that much.
MS is such an unpredictable disease which is enough reason to join ATACK if you qualify
This sounds almost identical to my story except I wasn't lucky enough to have a neuro like yourself to give me the benefit of the doubt. I believe that a lot of it comes down to education of newly diagnosed patients. I knew nothing about MS when I was diagnosed, I didn't know what a relapse was or what any of the many symptoms could be. In my head the tingling, sensory symptoms etc were a normal part of it so didn't pay any attention to them. At the time I thought I was 'lucky' as I didn't have anything that I felt needed reported to a doctor. Denial also played a big part in it but looking back I had multiple relapses over the years although none of it counts as it wasn't recorded. I am so happy that people coming down the line will have better access to treatment but please don't underestimate the difference the education and information provide you makes to people!
28 yrs now SPMS now living in a care home age 58.
Early treatment would have been a loud "YES" and I would encourage others.
This early treatment would be enormous as in health and well being instead of left in the woods as I was still am but understand more as lots of literature etc.
Preventive medicine early is key and shines a light of hope for CIS.
Happy 2023 😊 .
Love the Attack-MS idea the only issue is patients
Eg I’m on natalizumub myself. 36 year old male. Had my first main attack in May 2021 was on Tysabri in Sept (diagnosed in July) the hold up was trying to understand if it was carpal tunnel or something else (had a stomach hug and hand neuropathy) I had no clue what it was and Did not think or understand MS at the time.
I know that I had neck lehrmittes sign at least 12 months prior, maybe more + heat issues.
So, if patients themselves are unaware or putting off symptoms then I don’t know how well it will work. We need better education in the public for MS as most people don’t know what it is (I didn’t)
15 mths on Tysabri and stable, no new symptoms and have full mobility just the occasional lehrmittes sign and constant hand neuropathic symptoms.
Good point re public education Christian. You know all those adverts for acting fast with signs of stroke? Hands, face, speech? Something similar with MS. Not seconds and minutes (!) but days and weeks count.
Yes, the public consider an MS relapse as being severe enough to take away mobility. I knew I had MS but diagnosis still took 5 years.
Yeah this. I genuinely didn’t know what MS was
A proper education or screening by a dr would be huge
Plus the other issue is people brush off symptoms especially men. And not too mention Covid + long wait times with doctors
There should be a symptom checker online at each health department to check signs for neurological illness.
I agree. What's clear is that so many have experienced quite worrying levels of gaslighting or disregard by GP's for what are sometimes really obvious neurological symptoms. I can't imagine how hard a GP's job actually is and not trying to bash a very strained system, but things similar to the stroke information, as Annonie Mouse mentions, would be very useful. I had sudden numbness down one side of body and lopsided walking, shaky hand and weird cognitive feelings that time and space were moving at a different pace, amongst others, and was offered a telephone call (this was 8 years ago so not to do with Covid times!) in which I was told I had Labyrinthitis and prescribed anti-psychotics for dizzy spells. A paramedic friend said neurological symptoms like this should have triggered an immediate face:face appointment as a minimum and escalation as could be Stroke!! So maybe some kind of education for Public and GP's to spot wider array of neurological symptoms?
Same here. CIS in 2013 was rescanned in 2017 with a brain like a constellation (post 2 flares of EBV) and then during the 6 months they decided what to do with me, 4 disabling relapses, started on Tysabri in early 2018 - NEIDA since then but unsure how to prevent further deterioration.
You asked: Would I want to take part in a study like this? Yes I would.
With what’s known now that is.
My own case is pretty similar to your case study but from maybe 20 years previous to your patient
As it happens, I was personally in charge of authorising exceptional referrals which included interferon – when it had just come out
I decided then that the evidence was so poor (for disability) that I didn’t want to even argue to take it
And I’ve generally avoided having contact with MS doctors and nurses - since they (sorry) weren’t helpful.
I will now do what you say about reporting relapses.
Since I’ve got multimorbidity it can be difficult to disentangle what’s ms and what’s the other stuff. I’m sure I’m not the only one in this situation!
But what I want to ask please is whether you’re really totally disinterested in all those thousands of people who have a history of MS and are perhaps being under treated? What best to do for us?
I understand that the NHS is under ridiculous pressure at the moment but if I continue to use myself as an example, I have only had three MRIs in 30 years of MS. The MRI results take between three and six months to come back to me. So I’m probably progressing between MRI and getting the results.
I was recently eventually told that im “eligible” for the least effective treatments. But I’m still waiting to hear anything specific about that. I am currently arguing for at least a small reversal of the pyramid. But, unsurprisingly, I’ve heard nothing back about that
The real point of my question here is are all of us have not just been diagnosed being forgotten? Ignored? or simply not considered important for the clinicians?
I understand this a more difficult question . but that’s surely not a reason to not even try to answer it
Thanks so much for your work. About subscribing, it is quite a lot of money for those of us who aren’t able to work. Have you thought that maybe you ld get more people subscribing if it was slightly less? Please don’t think that I’m saying here that your work is not worth money! It’s extremely valuable!
But especially in the cost of living crisis, there are lots of us of us who cant work who have to prioritise heating, heating, charging mobility scooters and wheelchairs
Best wishes
--
Caroline, I can empathize and I am in the states. In over 30 years, MRIs for me were not just hit and miss, but because of complications with a cochlear implanted device beginning in 2003, I need sedation for any MRIs. No one wants to do them. Too complicated. So I’m on my own. Best to you in the new year.
Not on your own, Italien!
We're in it together!
All of us!
and together is - must be - powerful. More powerful than not together anyway.
Even if we're maybe a bit slow. and have lots of other (maybe boring) things we also need to do. Best to you too!
A big thank you Caroline. This is a lovely place to be. I don’t feel nearly as isolated. Over the years, the disease can be lonely and f2f meetings are difficult to fit everyone’s needs where I live. Viva la Selfie, but not by ourselves! 💕
Reading this post and the replies makes me feel like an alien or time traveller. I was severely disabled by every symptom of MS for 30 years; dozens of NHS doctors told me I was making it all up. The NHS refused to let me see a neurologist or have an MRI scan. I only have a diagnosis now because eventually I managed to diagnose myself and go private.
Honestly, after decades of NHS brainwashing and 'severe cerebral atrophy', I don't have a clue how to recognise relapses or believe they matter.
I definitely agree that everyone should have access to whatever treatments they choose. I hope this trial allows self-referrals, that's the only thing that would have saved me.
Hello and Happy New Year
Yes, I agree that cladribine should be a first line DMT. When I was diagnosed, figolimod was the new kid on the block and considered to be a great choice by my neurologists in the US. It was very difficult to sway my insurer to see things the same way. The usual course of less-effective DMTs for one year minimum is what is usually required by insurance companies here. I was lucky in that my neuro went to the mat for me and I was able to start with Gilenya. My main motivation was that it was new and that it was not an injection. I really had no idea what MS was or what it required. An ER visit after my first relapse suggested I had a stroke. After that was ruled out, I had to wait six months to get in to see a neurologist. I was given information to read and decide which DMT I would like to try and I chose Gilenya. I was told that was a good choice because if I moved to the front of the line and used Tysabri first, I’d have no where to go if Gilenya didn’t work out.
I now have a new neuro and he prescribed cladribine and it has been an improvement for me. I did not realize I was having breakthrough symptoms while on Gilenya. I hope it becomes a first-line choice for pwMS in the future.
I also think educating a new MS patients would be very helpful. Recognizing a relapse is still confusing to me.
It’s too late for me, but you ask specifically would I participate in such a clinical trial, my answer is a resounding absolutely! I have no doubt that taking Avonex for 20 years helped me, but heaven knows how long I’ve had MS, and I don’t think that was enough, particularly for saving cognition. My story is similar to so many. Early on, I was actually embarrassed to tell any physician of these wild symptoms that would resolve seemingly magically. I finally called a neurologist I knew through work and described the symptoms. The very first thing he asked was my age (38, and I’d had my second child, via c-section, at 34. First major surgery ever, and I never recovered.). MS was his first guess. But even with abnormal EMGs and MRIs early on, I wasn’t diagnosed until I was 42. It took five years and a bout of optic neuritis to get Avonex started. The interferons were the sole option. The concept of treating MS as we treat stroke crisis is an excellent idea. When I had a critical event that ended my L sided hearing, it was almost impossible to sort it out from stroke v MS. And no one even tried, because they didn’t take it seriously. So I say, go for it. Thanks Prof G. I’m grateful for your novel approaches to this devastating disease. I’m sorry you got flu! Wishing you and all here the best new year!
So many women seem to experience onset after birth or shortly after. I realise that pregnancy and birth are a huge strain on the body and immune system, but I’ve often wondered what neurologists think about this? What the role of pregnancy hormones etc?
I would love for this to be further explored too, Karen. Before I knew I had MS, I conceived my first child without any fertility treatment and don't think I had any symptoms post-birth (if I did, they must have been minor). However my physical symptoms became very obvious after commencing fertility treatment to conceive my second child, and MS was diagnosed shortly afterwards. I've since learnt there's thought to be a sevenfold risk of relapse following unsuccessful IVF treatment for women with MS; I wish serious money would be invested in exploring the role between hormones and MS, because whilst not all women undergo fertility treatment, lots of women become pregnant - and all women go through the menopause! https://mstrust.org.uk/latest/research/ms-more-active-after-assisted-reproduction-technology-art
I’ve often heard that the disease seems to emerge after an accident, illness, surgery, childbirth. The strains of a 2 week overdue pregnancy, continued work and then a c-section definitely knocked me down. I lost my hormones at 42 (chemo) the year I was diagnosed, but I recall prior thinking periods affected some of those weird RR symptoms.
Yes, I assumed that it might be the strain/stress to the body during pregnancy or childbirth being a massive toll and impact. If the strain of this equates to a significant illness in terms of impact to the body, would it reactivate EBV for example?
For me personally, I had a lot of sleeplessness post birth, with my baby waking upwards of 20 times a night for two years and then another birth with the same pattern. So really 4 years of extremely poor sleep/catnapping. Diagnosed 3 years post first birth, 1 year post second birth with first visible lesion MRI. I wondered if that was the final trigger alongside the context of other background factors.
Hormones have had an enormous impact during symptomatic stages, which was obvious each month when there was a very clear cyclical exacerbation of symptoms. I ended up taking the birth control pill in order to help manage that impact to MS.
Karen and Martina, I can’t even imagine the stress of IVF, having watched several friends go through the process. Karen, your description of the abject exhaustion of those years is so clear, it seems like yesterday. After the section, the baby had issues with over nursing and keeping milk down, so I’d be up all night, often weeping. The milk was chucked up and I was dry. She was on a nebulizer for asthma by 10 months for severe allergies. To boot, she flung herself in our bed until she was 5. And I had two other children! I didn’t recognize this as high stress, while I worsened physically. The IVF research is telling re hormones.
I was diagnosed in 2005, 5 years after what I later realised was my second relapse. I wasn’t offered any DMTs, and now classed as SPMS. Why do medics assume that people know what an MS relapse is?
I certainly didn’t. I was just given a diagnosis and went home to cry.
Some guidance and support would have been welcome. I hope the situation is better now for those who are newly diagnosed..
Re
This is why I am lobbying Merck and Biogen, the manufacturers of cladribine and natalizumab, to apply to the MHRA for label changes to allow us to use these agents first-line in patients with active MS. Do you agree with me?
Yes! Absolutely no reason why they shouldn't be offered.
Isn't that the point of Chariot MS trial, generate evidence and proof that Cladribine can significantly reduce new relapses in the upper limb and then NICE might allow it to be prescribed
I totally fail to understand why when SPMS without any more relapses , which then seems exactly like PPMS is not indicted as suitable for PPMS DMTs …. Why are they not deemed effective .
Back in 2014 when I saw this patient there were no treatments licensed for SPMS. Now we have siponimod. The reason is that when trials were done in pwSPMS we designed the studies badly. Now that we understand progressive MS all DMTs that work in RRMS will work in SPMS; all you have to do is design your trials to be longer and event driven.
But still unsure how I personally would qualify for siponimod ….when I personally saw you for a one off second opinion consultation it was certainly not available . There are still caveats around it aren’t there ? Perhaps I need to find a consultant again .
Brilliant newsletter and Attack MS approach sounds like the way to go. With the right information at the get-go I would totally sign up for this as a new patient.
Regarding flagging new symptoms: I agree with Christian that as new pwMS it is extremely hard to know what is a symptom of MS, no one tells you what might happen or what to look out for. In addition, determining what is new, what is reoccurring or what is evolving is hard to know as a lay person, likewise what is attributable to non-MS causes.
I feel that it’s probably just as hard for a neurologist to tell and so possibly this is why only the very obvious MS relapses are logged.
Symptoms like brain fog, chronic fatigue, aches and stiffness or RLS, or bowel and bladder problems, can be dismissed as ‘the normal strains of being a parent’ for example. It’s very easy to be gaslit here as a patient, or be told to watch and wait. Or wait until the two year MRI! So many pwMS are diagnosed late because their individual symptoms were attributed to various other causes rather than assessing the patient over time as a whole and seeing the patterns.
Going back to patients understanding their own MS symptoms; It’s hard to identify what a symptom is when you’ve never experienced it before, for example mild spasticity in the limbs where your limb feels like it’s being pulled or tightened inwards - how can a new feeling like this be identified with the correct diagnostic term, when it happened to me I didn’t know what it was or if it was a ‘known thing’. MS is full of these weird sensations and it would be amazing to have a patient manual, where you can look up the sensation or identify a description of what you are feeling and what that feeling is called medically. This would be more empowering for the pwMS, to discuss with a health care professional knowing they have identified or clarified the ‘feelings’ somewhat. I’ve had moments where I can’t comprehend written words for example, I’ve had years of weird momentary ‘rushing’ sensations which start in my feet and end in my head with lightheadedness, triggered by sudden noise and flight or fight response - but I don’t know what that name is or what it means! Without the name it’s hard to clarify or communicate it, it has no gravitas.
MS is not a single diagnosis but under the umbrella of MS there sits the need for many further diagnosis for the multitude of evolving symptoms. So as we can’t see our neurologists frequently, we need as pwMS some more resources like your newsletters to try to navigate what MS feels like, what does nerve damage feel like and who do we tell and what can we expect in terms of speed of escalation?
With MRI’s now reducing to once every two years, on top of just one yearly 5 minute phone consultation, it’s going to be difficult for pwMS to cover their years worth of symptoms. The most obvious ones will naturally float to the top and all these many other important ‘lesser’ or more difficult to quantify symptoms will be lost or overlooked or ignored. So this incomplete picture will impact the advice and support they get for treatments.
What about some kind of online patient symptom reporter/tracker that the patient inputs in real time and the neurologist and GP can be assigned to, to build a yearly picture prior to the yearly appointment we are allocated, or to flag a new emerging symptom that might be significant?
Sorry such a long response but one question; with a high efficiency DMD early on what is the average onset of SPMS compared to no DMD? Do all pwMS eventually become progressive? I know you’ve spoken about MS as one disease but I still don’t understand these stages.
Many thanks and a very Happy New Year to you Prof G!
“Symptoms like….can be dismissed as ‘the normal strains of being a parent’ for example.”
Karen, your comment is very informative. As I aged, I got terribly tired (and still do) of so much being attributed to “normal aging”. It is demoralizing, since many symptoms have existed for decades. Wishing you well. 💕
Another informative post cast, thank you Prof Giovannoni. But I feel like crying now I've listened to it and read some of the comments. I feel my MS is probably not being handled very well and wish I had a neurologist like you. I still have no personal notion of what a relapse is despite telling clinicians this. I am therefore on the 'wait and see' list despite reporting increasing symptoms. When I phoned the neurologist nurse to say I was experiencing tingling in my right foot (as opposed to the affected left side) I was told not to worry about it, so I don't suppose it has been recorded. I won't go into my whole story but feel very frustrated by my (lack of) treatment and fear that irreversible damage is occurring without medication.
Thinking of others, I think this initiative sounds like an excellent idea and could save a lot of difficulties in the long run. The more potential damage can be stopped early, the better it is both for the patient and their families and the less strain they will put on the NHS and social care as a result as the years go by. Win-win!
Good podcast Prof G, I really enjoyed listening to it. Sounds very similar to my highly active rapidly evolving RRMS diagnosis in 2014! I still remember the radiographer in Edinburgh asking me if I was sure I hadn't had symptoms for much longer than I thought because according to him my brain told him something different.
Fortunately my neurologist agreed and I started Tysabri as soon as I was able to take my diagnosis in, diagnosed 1st August 2014, started Tysabri before my birthday on 30 September 2014 which I'm so thankful for but my EDSS has been 6.0 since the start :-(
To answer your question I would always recommend starting a DMD as soon as possible and if joining a trial to get it had been necessary I would have considered it :-)
Keep up your good work Prof G, it makes sense to me living with MS, thank you for your work, I appreciate it. Karen
I'm fairly sure that if a) treatments were easily available at diagnosis (2001), b) that I hadn't gone a long time with no treatment (2008-2012) because I hadn't had an mri since diagnosis. I would still be working instead of having to lay down after cleaning the bathroom. I am finally seeing my neuro after more than 3 years in March after contacting PALS because of a mistake made during ocrevus treatment (I was prescribed half dose despite it being my second full dose). I had a change from tysabri to ocrevus without seeing him because I had been getting ever more severe infusion reactions with tysabri after 9 years.
Deleting comment to post in other article
Such a sad story as there are many. Hope this person doesn't blame himself for not pushing his neurologist more to get treatment. Our brain will always tell us we can't be that sick, we won't lose that much.
MS is such an unpredictable disease which is enough reason to join ATACK if you qualify