Thank you so much for this! I truly believe that RRMS is progressive and the word remitting should be removed. I have RRMS and try to explain what I mean about feeling the disease activity even though I have not relasped. It is like a 'background hum' of activity. I could always feel it, this disease has always felt active even when I have supposedly been in remission. It is very hard to argue with a neurologist who feels they have science and knowledge on their side and who refuse to listen, and even though I am an RN and I do understand that current treatments and thoughts about MS are based in sceince, I live with this, not them. On a physical level, neurologists (unless they have MS) cannot know, they rely on us to report to them, yet so many still say confidently 'This is whats going on' and sometimes they are wrong. As an RN and a patient, I feel too many doctors and nurses listen only to reply, they dont listen to understand their patient. This 'background hum' was always there - I say was because I have now undergone HSCT and for the first time ever the hum is quiet, in fact there is silence.
Thanks for sharing. A lot of neurologists just use the term "relapsing MS" instead of "relapsing remitting MS" I am going to post a video on HSCT this Wednesday which might interest you. I would be curious to know where you did it and with what conditioning regimen.
Dr. Brandon Beaber Hi there, thanks for your reply. I have an MS channel I have started up, click on the link if you are interested. I went to New Delhi India. I live in New Zealand and we were fighting to get Ocrevus into the country, which has since happened, but I am tired of drugs, every single one of them caused me medical issues, like liver dysfunction, or kidney dysfunction or viral activation. Tysabri was my 4th DMT, which left me positive for JCV. I cant remember my titre but it was very high. My Neurologist supported me investigating HSCT. The Ministry of Health and MSNZ (MS New Zealand) met with Neurologists and Haematologists here to discuss this procedure being done here in NZ for MS. I don’t know quite where they are at with it. I asked my Neurologist to refer me to a Haematologist so I could ask some relevant questions - I noticed that all of the centres offering it to overseas patients that follow a non-myeloablative regime use cyclophosphamide/ATG but Russia and Mexico are doing something different. My Neurologist felt this question best answered by a Haematologist. She referred me and the Haematologist asked me to reconsider going to Russia or Mexico because they follow a non myeloablative protocol and curiously have replaced ATG (which I understand is crucial to target those reactive T Cells) with Rituximab (acts against B Cells with CD 20 antigen) and have more than halved the dose of cyclophosphamide. He said the Retuximab would be given if EBV reactivated. The hapeamtologist in India also explained that rabbit ATG lasts in the system much longer than horse ATG picking off any rogue T Cells post transplantation). The heamatologist here felt using Rituximab was going against the accepted protocols for the randomised controlled trials and he was concerned about the low dose chemo (they use 20mg/kg but I am not sure if they also use this for the mobilisation of the mesenchymal stem cells, so that could be a factor for the lower dose chemo I guess....??). The Heamatologist I spoke to here in Auckland feels myeloablative is the way to go, but due to my age (49 at the time) and the cost, India was my best bet. I could not afford to waste time waiting to be accepted by some of the centres, as I had been off of tysabri for 4 months and was fearing a rebound relapse, I was really feeling the symptoms. I met with a man with RRMS over here who was treated by the same Haematologist in India and Skyped with a further 3 people who had been treated by this India Heamatologist, one in Portugal, and 2 in the UK. He asked and answered some questions that ticked the boxes for me as an RN, most notably my high JCV titre and what he intended to do to try and avoid PML as he felt this still posed a risk. The conditioning regime was: 1. Autologous, PBSC GCSF 8-10mcg/kg and for supportive care during neutropenic phase 5mg/kg 2. High dose chemo - cyclophosphamide 50/mg/kg x 4 days 3. Thymoglobulin - rabbit ATG 2.5 mg/kg x 3 days cumulative dose 7.5mg/kg 4. IVIG after the GCSF to reduce the risk of PML. I came home with 5 more doses to take monthly. It was a very hard thing to go through, but I have no regrets. I developed serum sickness (that was fin!! 🙄🙄), I needed 26 units of RDP/SDP. All fevers were engraftment fevers as serum blood cultures were consistently negative. The anti virals and antifungals gave me mild kidney dysfunction again, I had to discontinue them, but am doing well, renal fx has stabilised again. If I am a non responder at least I have Ocrevus to fall back on. Let me know if you want to know anything else about my experience. Have a great day, hope you are safe from COVID-19!
Dr. Brandon Beaber P.S. really glad to hear that this form of MS is being referred to as relapsing. Is this because there is evidence that we really dont achieve remission?
E this is something that others ask me too... I am just not sure! It is certainly curious. I know 4 other nurses personally and have met several more through the years who have MS.
Absolutely. The progression vs relapse dichotomy has always bugged me. I was asking my neurologist about whether I had become secondary progressive as I have noticed insidious worsening of symptoms in general over the last four years. He told me that progression starts happening much before we first thought, at the same time as relapses or even before. He also told me that I was on the right (the only) drug to treat progression anyways. Basically, relapses and progression are two components of MS, not two phases.
I am hoping, that non subjective measurements like brain volume loss and neurofilament marker-measurement get used more in normal clinics. I guess, then you would see, that most RRMS-patients loose brain cell also between relapses.
I have PPMS, my MRIs have been stable, showing no brain atrophy and no new lesions since starting Ocrevus 2 years ago. Yet, my symptoms have gotten much worse and my disability has progressed over that time period. What is causing the damage at this point when my B cell count is zero? Is this still an autoimmune disease? What is the actual driver of progression in progressive MS?
This is a very difficult question to answer. Some possible theories of the potential driver of disability in progressive MS include 1) smouldering inflammation in the nervous system behind a closed blood brain barrier, 2) secondary degeneration that is the result of prior injury, and 3) metabolic failure related to mitochondrial dysfunction. Some people have reported a "therapeutic lag" with treatment-that disease modifying therapies may have a delayed benefit.
That is really groundbreaking! After reading so many studies, I more and more have the feeling, that all patients suffer from continuous progressions and that additionally mostly younger patients react with inflamations. Maybe during times of increased underlying progresssion. That could mean at the end, that reducement of relapses is mostly irrelevant and that all the studies focussing on that would target the wrong endpoint. My wife has PPMS and it is kind of strange to see, that most studies are focussing on relapses and on the other side the RRMS- patients say that they still see only little relief in the relapse focussing medicines.
Thank you for addressing this. I've never felt like the mainstream "types" of MS, as described from reputable sources, adequately explain my experience with the disease. I developed hemiparesis over what seemed like several months (not hours, days, or weeks). It shows no signs of remitting. I am officially rrms. Of course, implications for treatment matter when it comes to diagnostic categories, but I also value, as a patient, knowing someone understands what's wrong with me. Thanks for your work.
Good video! Thank you. I think studies should focus on progression. Nothing good for progression yet. I'm RR, only one relapse almost two years ago. I think that I recover maybe 98%.. but that 2% makes me think.. what will happen to me with more relapses and partial recoveries? Also.. How to know if I have problems due MS or not.. I'm young right now (32).. but how to recognize the cause of worsening.. MS is confusing.. could it be MS? Other condition? Getting old? Btw.. can you do a video about the link between estrogen and MS? Younger women have more activity because her estrogen levels are higher? What happens to MS activity after menopause?
Yes, I definitely cannot walk as far as I used to, my right leg starts to ache. I was sure I was going to show some new lesion in the MRI but it came out exactly like the year before. Not very reassuring news but very important to know, something to think about. Thanks as always for the precious info!
I HAD a highly active MS with relapses every other month. There was little if any improvement between. 5 doses of Solumedrol for each of these. During this time, I would also develop brand new symptoms while not in a relapse. I didn’t fit into the box of any of the types of MS. I was told, “you have the good kind” and then after asking again a fee weeks later, “you have the progressive kind”. It was written in my chart as a Relapsing Form of MS. My relapses back then were all very severe. Now, these are so mild that I think nothing of them and have had to be convinced it was a relapse before any type of treatment. Based on my experience, I think the ‘types’ need some expansion as in adding new types, such as Relapsing Form. I’m really thrilled to see this video. Most people seem to think you cannot have both at once. I’ve also heard talk of RR with progression and SP or PP with relapses somewhat recently. So with all that, how would a doctor know which you have? It seems it would make a difference when deciding on a DMT. Thanks Dr Beaber!!! PS! I love the book!!! 😁❤️❤️❤️
Thanks :) One of my colleagues advocates a form of classification where you would just indicate whether it is relapsinig and whether it is progressive, so the four subtypes would be relapsing non-progressive, relapsing progressive, non-relapsing non-progressive, and non-relapsing progressive. Dull but straight forward.
Dr. Brandon Beaber, I like that a lot better! It’s easier and more straightforward so everyone is able to be given a subtype. I’d even be able to check one of those pesky little checkboxes that asks me which type of MS I have. 😆 Let me know if I can help advocate for this change. Thx!! 🤗❤️❤️
Yes, that has always been the case with me. My first symptom was full body numbness, which has mostly gone away, except for my hands. This was really the only time I had remission(and was seven years ago) Since then it has been progressive. Very nicely fit into the PIRA category. Very much appreciate your videos. Very well done and informative.
Thanks so much for reviewing this study Dr. Beaber! Very informative! I’d love to hear your thoughts on aggressive progressive MS. I’ve heard so often that progression is slow but that’s not my experience. I was diagnosed in 2014 after experiencing foot drop in 2013 and by 2017 I could no longer walk. Any new symptoms I got have never improved. To me this progression seems rapid and I’ve never heard anyone discuss aggressive MS so you opinion would be greatly appreciated: how to diagnose it, treatments recommended and prognosis for the long term. While it may seem like a depressing topic in light of all the advancements made in the MS field it would be a comfort to know I’m not the only patient with rapid progression. Thanks again for this video!
It's unfortunate that your progression was fast. I have had some rare patients with very rapid progression for unclear reasons. Sometimes, this is associated with active lesions that sometimes present with progressive symptoms instead of as relapses. For those without corresponding active/new lesions, I don't have an explanation.
Hi Dr. Beaber!! Great videos..great to see you here and thanx for all this info from you and the commenters. It's nice to hear what other MS's experience. Dr. Beaber thank you putting a name to my PPMS. I have a hard time labeling my progressive MS because I always thought that any progression would be obvious or at least I hoped it would be an event that was the trigger. but my is a steady type of progression. I know my body (my new body) and what I thought was a relapse was the slow decline. It's not as if I'd wake one day being more unsteady or falling more. It was just me still adjusting to something so shuttle to the observer but to me it was maybe I was more fatigued today than yesterday or I would not be able to lift my bad leg up as high as yesterday but as months went by I believe it's by God's Grace that it was not a big event that caused a drastic change of my condition.
I noticed that you mentioned that sometimes Multiple sclerosis damage can be confused as orthopedic injury. I have PPMS. But I have always had knee problems on my left knee. After an MRI it's revealed that I do actually need a knee replacement. Currently taking tecfidera. I have been in debilitating pain for a long time so I'm really not sure where I stand in terms of my actual gate. I currently can't walk very nicely at all but I attribute that to pain for the most part. After my knee surgery my neurologist a ant to try tysabri or ocrevus. I hope to get even better and be able to walk longer distances. Thank you for all the info!
I hope things work out once the pain improves. It is also common for people with MS to get secondary orthopaedic issues because if their gait is abnormal, it puts additional stress on the knees, hips, low back, etc.
@@DrBrandonBeaber yes I definitely have developed issues in my hips and other leg due to gaite problems and pain. However, I feel that I can adress thos problems with a few sessions of the MS gym Or stretching. Very different from the knee pain that never goes away and I feel it immediately revets al Any progress i may have made in therapy sessions. I feel this surgery will drastically improve my abilities. Thank you for the time!
Thanks for sharing Dr. B! I absolutely hope awareness continues to grow from this point on. It would seem that aside from remylenation therapies, the next thing to come down the pipeline would be something along the lines of bbb penetration to locate these 'smoldering' areas... Thoughts on where you might see science go next?
Also (without going into too much detail), with heavy hitters like Ocrevus, Lemtrada, and even HSCT - the community behind these often refer to 'riding the rollercoaster'. Is it possible for these smoldering areas to 'burn out', allowing for progression to finally stop? It appears the study was conducted for 2 years? Maybe I'm mistaken on the length... wishful thinking
@@ericguzman5348 It's difficult to comment on the long term effects of these high-efficacy therapies and the idea of "therapeutic lag." Unfortunately, there are some people who continue to have progression many years after the last relapse or new MRI lesion, even with high-efficacy therapy. We are definitely missing an important piece of the puzzle.
I definitely had people comment on my clumsiness a few years before what I think was probably my first (undiagnosed) relapse, which didn't really happen when I was younger.
I was diagnosed with RRMS June 2019. Walked with the cane for a bit and recovered to the point of walking unaided. No new MRI activity, but have progressed significantly. Now I use a walker and on rare occasions a wheelchair
Going to be a Dallas Mavericks fan from here on out because of Mark Cuban I was able to get a $69 a pill passing blocker for like 30 bucks of prescription
I know the terminology for MS staging has changed. Not RRMS or SPMS anymore. I am male was DXd when I was 49 and I am now 61, it seemed to me to be RR for the first few years but I was progressing without relapses. I think I picked a term at that time that seemed to fit me, RPMS (Relapsing Progressive.) I feel that some of my problems (particularly the motor issues and lower GI issues) are mostly progressive and have been that way since the beginning, where the brain related issues have seemed to get worse and resolve, up and down. At least it seems that way.
Thank you. I have felt very subtle changes in the past few months and keep,saying to myself it must be the stress of the pandemic. Is it possible that once the stress abates the increased symptoms will abate as well? Are there studies about the effects of stress on symptoms?
Dr, Relapse or not, have a minor flare/infection/injury and amount of exercise (# of sets) come down drastically - struggling to get amount of exercise back to 2018 levels - Progression is frustrating, hard to keep myself positive :-((
I had my first episode in Nov 2011 at the age of 17, couldn't get diagnosed, however, I recovered 90-95% in a few months...remained stable for almost a year and have been progressing since then... I got diagnosed in 2015 with relapsing remitting multiple sclerosis (I strongly feel that I was misdiagnosed)...in 2018 the diagnosis was changed to secondary progressive multiple sclerosis and now in 2020 the condition has progressed to the extent that I cannot stand properly for more than 1-2 minutes and can walk hardly any distance with the help of a walker
Sorry to hear about your experience. I feel that a lot of doctors are hesitant to make a diagnosis of progressive multiple sclerosis if the overall level of disability is low. The study demonstrates more objectively the changes you were noticing early on. One MS researcher, Dr. Myla Goldman, has done a lot of work on the 6-minute walk test which is more sensitive to pick up a subtler change.
Hey doc, thanks for all your informative videos. I was diagnosed with MS for about 6 years, taking Rebif. Even though my 8 MRIs throughout these years didn't show new or active lessions, my symptoms slowly got worse ( fatigue, double vision, lack of balance, clumsyness, etc ). The last year my symptoms got worse and new ones appeared ( lack of proper control of my main hand, shaky knees, difficulty speaking ). I have an appointment with my neurologist in the beginning of july and I would like to change my DMT, maybe that will make me feel better.
I am diagnosed RRMS last year and on Ocrevus for 1 year. I had a rough relapse that led to diagnosis and recovered from it, however i feel i am progressing. I have not had a relapse and current MRIs show no new lesions, but I know as time goes on, I feel I am progressing. Especially with cognition. I am becoming forgetful and I have hard time finding the correct words. According to my MRIs I am not progressing and disease is stable, but I don't feel like it is stable. What's the next step with this information? Dr. Gavin Giovannoni once tweeted that he recognized in clinic that his patients who were on Ocrevus, like myself, were voicing these concerns about no new relapses and no lesion, but still having progression. Seems to be a common thing with RRMS patients on Ocrevus.
I am interested to know where researches standing on this topic (maybe video on this ?:) ) Are there promising studies that could explain the progression (not related to relapses). And is it meaningfull to make new DMTs that will eliminate relapses? Thank you for this video! And I am not sure If I can see the clear progression in my case and I am relapse free for several years.
Ampyra and amantadine are two very different medications used for different purposes in MS. Ampyra may help with walking speed, and I have a specific video on this topic: ua-cam.com/video/5wbUlb8IaNI/v-deo.html Amantadine is most commonly used for multiple sclerosis fatigue, though there was an interesting article suggesting that it could be helpful in COVID-19 which I present here: ua-cam.com/video/OXOLgy5rAqU/v-deo.html
I had multiple sclerosis for 4 prior to being diagnosed . It is only looking back I can connect the dots . I needed a walking aid before I was officiallly diagnosed , 2 years into the disease . Multiply sclerosis strips away at your level of functioning layer by layer , I would not wish this disease on anyone .
Love your videos! Before this study, did you experience this in your practice very often? Did you have many patients coming into your office with complaints of worsening symptoms but their MRIs were showing NEDA?
I am able to recognize from a retrospective point of view that MS has slowly taken items away. I don’t know if this has been exacerbated by COVID-19 but assume it has been another factor. The need for my own acknowledgement of flexibility is crucial. I haven’t stopped learning about MS effects on me physically, mentally and emotionally. I don’t like this but am resigned to accept all as it is! The new factor is the pandemic or plague is my new label. I am encouraged there will soon be the choice of appropriate vaccine. This ‘MS game’ continues to evolve along with my learning reinforcing I must be kind to myself always!
Does PIRA happen due to brain volume loss, that is, brain shrinkage, and/or something else? I have RRMS though I'm only at the beginning, in year 3, and I don't feel like my MS progressed. When I have relapses, afterwards I have subtle small leftover symptoms but over many months, they resolve as well. At least that's so far.
Yes..brain atrophy or Neurodegeneration. Hsct is only therapy that results in normal .2 atrophy. See "normal brain atrophy after hsct" See "reversing Neurodegeneration in ms zivadinov"
My doctor said people generally are in the relapsing/remitting category for 10 years, then gradually slides into the secondary progressive stage. That seems the case with me. The medication helps slow it down. I'm grateful it's not worse.
It turns out that absolute age is a better predictor of progressive MS (rather than duration of disease), and many people with MS do not actually develop progressive MS even after several decades.
Doctor: "Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.
While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS." National MS Society
@@davidwise3426 There is also a trend towards a better prognosis with MS overall which could be due to other factors such as vitamin D supplementation and a superior ability to diagnose mild cases of MS.
@@DrBrandonBeaber Last month my vitamin D test put me at 30.6 in the acceptable range of 30 to 100 ng/ml. My doctor put me on 2,000 mg of D3 again, thought I wasn't going to make it. Never again! That stuff is poison to me. MS has given me malabsorption problems, can't tolerate vitamin D.
Thank you for the informative video. I have been wondering about this for a while. I am looking forward to receiving your book. I am currently following you on Twitter If you want to leave me a message on how to receive the book
I am at the beggining of your video and I have RRMS at least if is to believe to doctors and I am on rebif,before rebif,I was fine 8 years and after rebif I am so worse that I cant describe it...I can walk tho but dizzinise,duoble vision frm time to time,vertigo,some weird pain in my stomack like nerves is taking a part or some hot sensation in legs or even in my left part of the ass or other 100 symptoms that is active in the 50 minutes of my life or few hours and efter,they disappear and all that with RRMS 🤯🤯🤯 0 relapses over 8 years and while I I am watching this video while I am typing,I have fatigue but just very rarely 😁 and yes,before the rebif,I was sure that I can walk for 30 km,I dont know how miles is that but now,I am not sure for even walking of 1km even I can walk tha far I am not 100% sure.
I understand that this is not a new idea and that many people consider multiple sclerosis to be "progressive" from the start in some sense. However, I was very surprised to see that such a low percentage of disability in relapsing MS is related to relapses.
Your question is a good one because in reality there may be no biological difference, but with PIRA in relapsing MS, the progression is presumably subtle and unrecognized.
I’m a unicorn and have NEVER fit inside the textbook of what MS is. I adore my neurologist, have been with him for over 17 years. I just wish more than a 25 foot walking test, strength and vision were done at appointments. Dexterity, cognitive, and speech need to be looked at as well. It also depends on the time of day, weather, etc at the time of your appointment as well. We MSers are snowflakes ❄️ for sure, but I’m also a unicorn 🦄 ! Great video. 🧡
Thanks for the compliment. Some neurologists do the 9-hole peg test to measure hand function and the SDMT to measure cognitive function, but these test are time consuming, and the results can fluctuate a lot.
Do you know what else you can see retroactively besides progression? You can also see with long term use retroactively how much dalfampridine helps people. I have slowly and very gradually improved over the past seven years, and I can never tell that it’s helping one thing at the time but can see it when I look back.
This is the article I am discussing in the video: jamanetwork.com/journals/jamaneurology/fullarticle/2766801
Thank you so much for this! I truly believe that RRMS is progressive and the word remitting should be removed. I have RRMS and try to explain what I mean about feeling the disease activity even though I have not relasped. It is like a 'background hum' of activity. I could always feel it, this disease has always felt active even when I have supposedly been in remission. It is very hard to argue with a neurologist who feels they have science and knowledge on their side and who refuse to listen, and even though I am an RN and I do understand that current treatments and thoughts about MS are based in sceince, I live with this, not them. On a physical level, neurologists (unless they have MS) cannot know, they rely on us to report to them, yet so many still say confidently 'This is whats going on' and sometimes they are wrong. As an RN and a patient, I feel too many doctors and nurses listen only to reply, they dont listen to understand their patient. This 'background hum' was always there - I say was because I have now undergone HSCT and for the first time ever the hum is quiet, in fact there is silence.
Thanks for sharing. A lot of neurologists just use the term "relapsing MS" instead of "relapsing remitting MS" I am going to post a video on HSCT this Wednesday which might interest you. I would be curious to know where you did it and with what conditioning regimen.
Dr. Brandon Beaber
Hi there, thanks for your reply. I have an MS channel I have started up, click on the link if you are interested. I went to New Delhi India. I live in New Zealand and we were fighting to get Ocrevus into the country, which has since happened, but I am tired of drugs, every single one of them caused me medical issues, like liver dysfunction, or kidney dysfunction or viral activation. Tysabri was my 4th DMT, which left me positive for JCV. I cant remember my titre but it was very high. My Neurologist supported me investigating HSCT. The Ministry of Health and MSNZ (MS New Zealand) met with Neurologists and Haematologists here to discuss this procedure being done here in NZ for MS. I don’t know quite where they are at with it. I asked my Neurologist to refer me to a Haematologist so I could ask some relevant questions - I noticed that all of the centres offering it to overseas patients that follow a non-myeloablative regime use cyclophosphamide/ATG but Russia and Mexico are doing something different. My Neurologist felt this question best answered by a Haematologist. She referred me and the Haematologist asked me to reconsider going to Russia or Mexico because they follow a non myeloablative protocol and curiously have replaced ATG (which I understand is crucial to target those reactive T Cells) with Rituximab (acts against B Cells with CD 20 antigen) and have more than halved the dose of cyclophosphamide. He said the Retuximab would be given if EBV reactivated. The hapeamtologist in India also explained that rabbit ATG lasts in the system much longer than horse ATG picking off any rogue T Cells post transplantation). The heamatologist here felt using Rituximab was going against the accepted protocols for the randomised controlled trials and he was concerned about the low dose chemo (they use 20mg/kg but I am not sure if they also use this for the mobilisation of the mesenchymal stem cells, so that could be a factor for the lower dose chemo I guess....??). The Heamatologist I spoke to here in Auckland feels myeloablative is the way to go, but due to my age (49 at the time) and the cost, India was my best bet. I could not afford to waste time waiting to be accepted by some of the centres, as I had been off of tysabri for 4 months and was fearing a rebound relapse, I was really feeling the symptoms. I met with a man with RRMS over here who was treated by the same Haematologist in India and Skyped with a further 3 people who had been treated by this India Heamatologist, one in Portugal, and 2 in the UK. He asked and answered some questions that ticked the boxes for me as an RN, most notably my high JCV titre and what he intended to do to try and avoid PML as he felt this still posed a risk.
The conditioning regime was:
1. Autologous, PBSC GCSF 8-10mcg/kg and for supportive care during neutropenic phase 5mg/kg
2. High dose chemo - cyclophosphamide 50/mg/kg x 4 days
3. Thymoglobulin - rabbit ATG 2.5 mg/kg x 3 days cumulative dose 7.5mg/kg
4. IVIG after the GCSF to reduce the risk of PML. I came home with 5 more doses to take monthly.
It was a very hard thing to go through, but I have no regrets. I developed serum sickness (that was fin!! 🙄🙄), I needed 26 units of RDP/SDP. All fevers were engraftment fevers as serum blood cultures were consistently negative. The anti virals and antifungals gave me mild kidney dysfunction again, I had to discontinue them, but am doing well, renal fx has stabilised again.
If I am a non responder at least I have Ocrevus to fall back on.
Let me know if you want to know anything else about my experience. Have a great day, hope you are safe from COVID-19!
Dr. Brandon Beaber
P.S. really glad to hear that this form of MS is being referred to as relapsing. Is this because there is evidence that we really dont achieve remission?
@@Jesterjones9073 Thank you for sharing, Anne! I'm always curious: why there are so many RNs with MS & other autoimmunes?
E this is something that others ask me too... I am just not sure! It is certainly curious. I know 4 other nurses personally and have met several more through the years who have MS.
One of your best videos yet! Really nicely done, TY!
Thanks.
Yes, I have RRMS and definitely feel like I have continuously progressed.
Thank you for sharing
Absolutely. The progression vs relapse dichotomy has always bugged me. I was asking my neurologist about whether I had become secondary progressive as I have noticed insidious worsening of symptoms in general over the last four years. He told me that progression starts happening much before we first thought, at the same time as relapses or even before. He also told me that I was on the right (the only) drug to treat progression anyways. Basically, relapses and progression are two components of MS, not two phases.
Which drug was that? Ocrevus?
@@score311 Yes. Ocrevus.
I am hoping, that non subjective measurements like brain volume loss and neurofilament marker-measurement get used more in normal clinics. I guess, then you would see, that most RRMS-patients loose brain cell also between relapses.
I have PPMS, my MRIs have been stable, showing no brain atrophy and no new lesions since starting Ocrevus 2 years ago. Yet, my symptoms have gotten much worse and my disability has progressed over that time period.
What is causing the damage at this point when my B cell count is zero? Is this still an autoimmune disease? What is the actual driver of progression in progressive MS?
This is a very difficult question to answer. Some possible theories of the potential driver of disability in progressive MS include 1) smouldering inflammation in the nervous system behind a closed blood brain barrier, 2) secondary degeneration that is the result of prior injury, and 3) metabolic failure related to mitochondrial dysfunction. Some people have reported a "therapeutic lag" with treatment-that disease modifying therapies may have a delayed benefit.
That is really groundbreaking!
After reading so many studies, I more and more have the feeling, that all patients suffer from continuous progressions and that additionally mostly younger patients react with inflamations. Maybe during times of increased underlying progresssion.
That could mean at the end, that reducement of relapses is mostly irrelevant and that all the studies focussing on that would target the wrong endpoint.
My wife has PPMS and it is kind of strange to see, that most studies are focussing on relapses and on the other side the RRMS- patients say that they still see only little relief in the relapse focussing medicines.
You're right... This is a very good point
Thank you for addressing this. I've never felt like the mainstream "types" of MS, as described from reputable sources, adequately explain my experience with the disease. I developed hemiparesis over what seemed like several months (not hours, days, or weeks). It shows no signs of remitting. I am officially rrms.
Of course, implications for treatment matter when it comes to diagnostic categories, but I also value, as a patient, knowing someone understands what's wrong with me. Thanks for your work.
Good video!
Thank you.
I think studies should focus on progression. Nothing good for progression yet. I'm RR, only one relapse almost two years ago. I think that I recover maybe 98%.. but that 2% makes me think.. what will happen to me with more relapses and partial recoveries?
Also.. How to know if I have problems due MS or not.. I'm young right now (32).. but how to recognize the cause of worsening.. MS is confusing.. could it be MS? Other condition? Getting old?
Btw.. can you do a video about the link between estrogen and MS? Younger women have more activity because her estrogen levels are higher? What happens to MS activity after menopause?
Yes, I definitely cannot walk as far as I used to, my right leg starts to ache. I was sure I was going to show some new lesion in the MRI but it came out exactly like the year before. Not very reassuring news but very important to know, something to think about. Thanks as always for the precious info!
Thank you for sharing. I am surprised to see that most people with relapsing MS seem to note this.
I HAD a highly active MS with relapses every other month. There was little if any improvement between. 5 doses of Solumedrol for each of these. During this time, I would also develop brand new symptoms while not in a relapse. I didn’t fit into the box of any of the types of MS. I was told, “you have the good kind” and then after asking again a fee weeks later, “you have the progressive kind”. It was written in my chart as a Relapsing Form of MS. My relapses back then were all very severe. Now, these are so mild that I think nothing of them and have had to be convinced it was a relapse before any type of treatment. Based on my experience, I think the ‘types’ need some expansion as in adding new types, such as Relapsing Form. I’m really thrilled to see this video. Most people seem to think you cannot have both at once. I’ve also heard talk of RR with progression and SP or PP with relapses somewhat recently. So with all that, how would a doctor know which you have? It seems it would make a difference when deciding on a DMT. Thanks Dr Beaber!!! PS! I love the book!!! 😁❤️❤️❤️
Thanks :) One of my colleagues advocates a form of classification where you would just indicate whether it is relapsinig and whether it is progressive, so the four subtypes would be relapsing non-progressive, relapsing progressive, non-relapsing non-progressive, and non-relapsing progressive. Dull but straight forward.
Dr. Brandon Beaber, I like that a lot better! It’s easier and more straightforward so everyone is able to be given a subtype. I’d even be able to check one of those pesky little checkboxes that asks me which type of MS I have. 😆 Let me know if I can help advocate for this change. Thx!! 🤗❤️❤️
Yes, that has always been the case with me. My first symptom was full body numbness, which has mostly gone away, except for my hands. This was really the only time I had remission(and was seven years ago) Since then it has been progressive. Very nicely fit into the PIRA category.
Very much appreciate your videos. Very well done and informative.
Thanks so much for reviewing this study Dr. Beaber! Very informative! I’d love to hear your thoughts on aggressive progressive MS. I’ve heard so often that progression is slow but that’s not my experience. I was diagnosed in 2014 after experiencing foot drop in 2013 and by 2017 I could no longer walk. Any new symptoms I got have never improved. To me this progression seems rapid and I’ve never heard anyone discuss aggressive MS so you opinion would be greatly appreciated: how to diagnose it, treatments recommended and prognosis for the long term. While it may seem like a depressing topic in light of all the advancements made in the MS field it would be a comfort to know I’m not the only patient with rapid progression. Thanks again for this video!
It's unfortunate that your progression was fast. I have had some rare patients with very rapid progression for unclear reasons. Sometimes, this is associated with active lesions that sometimes present with progressive symptoms instead of as relapses. For those without corresponding active/new lesions, I don't have an explanation.
Hi Dr. Beaber!! Great videos..great to see you here and thanx for all this info from you and the commenters. It's nice to hear what other MS's experience.
Dr. Beaber thank you putting a name to my PPMS. I have a hard time labeling my progressive MS because I always thought that any progression would be obvious or at least I hoped it would be an event that was the trigger.
but my is a steady type of progression. I know my body (my new body) and what I thought was a relapse was the slow decline. It's not as if I'd wake one day being more unsteady or falling more.
It was just me still adjusting to something so shuttle to the observer but to me it was maybe I was more fatigued today than yesterday or I would not be able to lift my bad leg up as high as yesterday but as months went by I believe it's by God's Grace that it was not a big event that caused a drastic change of my condition.
I noticed that you mentioned that sometimes Multiple sclerosis damage can be confused as orthopedic injury. I have PPMS. But I have always had knee problems on my left knee. After an MRI it's revealed that I do actually need a knee replacement. Currently taking tecfidera. I have been in debilitating pain for a long time so I'm really not sure where I stand in terms of my actual gate. I currently can't walk very nicely at all but I attribute that to pain for the most part. After my knee surgery my neurologist a ant to try tysabri or ocrevus. I hope to get even better and be able to walk longer distances. Thank you for all the info!
I hope things work out once the pain improves. It is also common for people with MS to get secondary orthopaedic issues because if their gait is abnormal, it puts additional stress on the knees, hips, low back, etc.
@@DrBrandonBeaber yes I definitely have developed issues in my hips and other leg due to gaite problems and pain. However, I feel that I can adress thos problems with a few sessions of the MS gym Or stretching. Very different from the knee pain that never goes away and I feel it immediately revets al
Any progress i may have made in therapy sessions. I feel this surgery will drastically improve my abilities. Thank you for the time!
Thanks for sharing Dr. B! I absolutely hope awareness continues to grow from this point on. It would seem that aside from remylenation therapies, the next thing to come down the pipeline would be something along the lines of bbb penetration to locate these 'smoldering' areas...
Thoughts on where you might see science go next?
Also (without going into too much detail), with heavy hitters like Ocrevus, Lemtrada, and even HSCT - the community behind these often refer to 'riding the rollercoaster'. Is it possible for these smoldering areas to 'burn out', allowing for progression to finally stop? It appears the study was conducted for 2 years? Maybe I'm mistaken on the length... wishful thinking
@@ericguzman5348 It's difficult to comment on the long term effects of these high-efficacy therapies and the idea of "therapeutic lag." Unfortunately, there are some people who continue to have progression many years after the last relapse or new MRI lesion, even with high-efficacy therapy. We are definitely missing an important piece of the puzzle.
I definitely had people comment on my clumsiness a few years before what I think was probably my first (undiagnosed) relapse, which didn't really happen when I was younger.
Thank you for sharing.
Excellent topic. As an aside, I'm intrigued by that painting over your right shoulder.
:) It was made by one of my colleagues
I was diagnosed with RRMS June 2019. Walked with the cane for a bit and recovered to the point of walking unaided. No new MRI activity, but have progressed significantly. Now I use a walker and on rare occasions a wheelchair
Going to be a Dallas Mavericks fan from here on out because of Mark Cuban I was able to get a $69 a pill passing blocker for like 30 bucks of prescription
nice
Thanks for your valuable work!
I know the terminology for MS staging has changed. Not RRMS or SPMS anymore. I am male was DXd when I was 49 and I am now 61, it seemed to me to be RR for the first few years but I was progressing without relapses. I think I picked a term at that time that seemed to fit me, RPMS (Relapsing Progressive.) I feel that some of my problems (particularly the motor issues and lower GI issues) are mostly progressive and have been that way since the beginning, where the brain related issues have seemed to get worse and resolve, up and down. At least it seems that way.
Thank you. I have felt very subtle changes in the past few months and keep,saying to myself it must be the stress of the pandemic. Is it possible that once the stress abates the increased symptoms will abate as well? Are there studies about the effects of stress on symptoms?
Dr, Relapse or not, have a minor flare/infection/injury and amount of exercise (# of sets) come down drastically - struggling to get amount of exercise back to 2018 levels - Progression is frustrating, hard to keep myself positive :-((
Stay strong, keep fighting! You are not alone ..
I had my first episode in Nov 2011 at the age of 17, couldn't get diagnosed, however, I recovered 90-95% in a few months...remained stable for almost a year and have been progressing since then... I got diagnosed in 2015 with relapsing remitting multiple sclerosis (I strongly feel that I was misdiagnosed)...in 2018 the diagnosis was changed to secondary progressive multiple sclerosis and now in 2020 the condition has progressed to the extent that I cannot stand properly for more than 1-2 minutes and can walk hardly any distance with the help of a walker
Sorry to hear about your experience. I feel that a lot of doctors are hesitant to make a diagnosis of progressive multiple sclerosis if the overall level of disability is low. The study demonstrates more objectively the changes you were noticing early on. One MS researcher, Dr. Myla Goldman, has done a lot of work on the 6-minute walk test which is more sensitive to pick up a subtler change.
@@DrBrandonBeaberI'm really looking forward to drugs/therapies that could restore function... When could we expect one?
@@aditya50499 Ocrevus might be the closest to that
@@DrBrandonBeabertreatment era did nothing for her...tragic as usual..
Hey doc, thanks for all your informative videos. I was diagnosed with MS for about 6 years, taking Rebif. Even though my 8 MRIs throughout these years didn't show new or active lessions, my symptoms slowly got worse ( fatigue, double vision, lack of balance, clumsyness, etc ). The last year my symptoms got worse and new ones appeared ( lack of proper control of my main hand, shaky knees, difficulty speaking ). I have an appointment with my neurologist in the beginning of july and I would like to change my DMT, maybe that will make me feel better.
I am diagnosed RRMS last year and on Ocrevus for 1 year. I had a rough relapse that led to diagnosis and recovered from it, however i feel i am progressing. I have not had a relapse and current MRIs show no new lesions, but I know as time goes on, I feel I am progressing. Especially with cognition. I am becoming forgetful and I have hard time finding the correct words. According to my MRIs I am not progressing and disease is stable, but I don't feel like it is stable. What's the next step with this information? Dr. Gavin Giovannoni once tweeted that he recognized in clinic that his patients who were on Ocrevus, like myself, were voicing these concerns about no new relapses and no lesion, but still having progression. Seems to be a common thing with RRMS patients on Ocrevus.
I am interested to know where researches standing on this topic (maybe video on this ?:) ) Are there promising studies that could explain the progression (not related to relapses).
And is it meaningfull to make new DMTs that will eliminate relapses? Thank you for this video! And I am not sure If I can see the clear progression in my case and I am relapse free for several years.
Yay that's great news ❤️ are you from Serbia? 🤗
Good info. Thank you for doing this. Can you please review data comparing Ampyra with amantadine?
Ampyra and amantadine are two very different medications used for different purposes in MS. Ampyra may help with walking speed, and I have a specific video on this topic: ua-cam.com/video/5wbUlb8IaNI/v-deo.html Amantadine is most commonly used for multiple sclerosis fatigue, though there was an interesting article suggesting that it could be helpful in COVID-19 which I present here: ua-cam.com/video/OXOLgy5rAqU/v-deo.html
Yes, I was diagnosed w RRMS in 2012 but have seen a dramatic progression since then.
I had multiple sclerosis for 4 prior to being diagnosed . It is only looking back I can connect the dots . I needed a walking aid before I was officiallly diagnosed , 2 years into the disease . Multiply sclerosis strips away at your level of functioning layer by layer , I would not wish this disease on anyone .
Love your videos! Before this study, did you experience this in your practice very often? Did you have many patients coming into your office with complaints of worsening symptoms but their MRIs were showing NEDA?
Yes. Definitely. This is not a new idea at all.
I am able to recognize from a retrospective point of view that MS has slowly taken items away. I don’t know if this has been exacerbated by COVID-19 but assume it has been another factor. The need for my own acknowledgement of flexibility is crucial. I haven’t stopped learning about MS effects on me physically, mentally and emotionally. I don’t like this but am resigned to accept all as it is! The new factor is the pandemic or plague is my new label. I am encouraged there will soon be the choice of appropriate vaccine. This ‘MS game’ continues to evolve along with my learning reinforcing I must be kind to myself always!
Thanks for sharing Annette. These are very difficult times with COVID-19, but I believe sincerely that by this summer, things will be a lot better.
Does PIRA happen due to brain volume loss, that is, brain shrinkage, and/or something else?
I have RRMS though I'm only at the beginning, in year 3, and I don't feel like my MS progressed. When I have relapses, afterwards I have subtle small leftover symptoms but over many months, they resolve as well. At least that's so far.
Yes..brain atrophy or Neurodegeneration.
Hsct is only therapy that results in normal
.2 atrophy. See "normal brain atrophy after hsct"
See "reversing Neurodegeneration in ms zivadinov"
My doctor said people generally are in the relapsing/remitting category for 10 years, then gradually slides into the secondary progressive stage. That seems the case with me. The medication helps slow it down. I'm grateful it's not worse.
It turns out that absolute age is a better predictor of progressive MS (rather than duration of disease), and many people with MS do not actually develop progressive MS even after several decades.
Doctor: "Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.
While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS." National MS Society
@@davidwise3426 There is also a trend towards a better prognosis with MS overall which could be due to other factors such as vitamin D supplementation and a superior ability to diagnose mild cases of MS.
@@DrBrandonBeaber Last month my vitamin D test put me at 30.6 in the acceptable range of 30 to 100 ng/ml. My doctor put me on 2,000 mg of D3 again, thought I wasn't going to make it. Never again! That stuff is poison to me. MS has given me malabsorption problems, can't tolerate vitamin D.
Thank you for the informative video. I have been wondering about this for a while. I am looking forward to receiving your book. I am currently following you on Twitter If you want to leave me a message on how to receive the book
Do you have the same screen name on twitter?
@@DrBrandonBeaber Yes
So in fact you can discontinue the meds because of their failure due to progression?
I am at the beggining of your video and I have RRMS at least if is to believe to doctors and I am on rebif,before rebif,I was fine 8 years and after rebif I am so worse that I cant describe it...I can walk tho but dizzinise,duoble vision frm time to time,vertigo,some weird pain in my stomack like nerves is taking a part or some hot sensation in legs or even in my left part of the ass or other 100 symptoms that is active in the 50 minutes of my life or few hours and efter,they disappear and all that with RRMS 🤯🤯🤯 0 relapses over 8 years and while I I am watching this video while I am typing,I have fatigue but just very rarely 😁 and yes,before the rebif,I was sure that I can walk for 30 km,I dont know how miles is that but now,I am not sure for even walking of 1km even I can walk tha far I am not 100% sure.
Yes, dr Gavin Giovannoni calls "smoldering MS", almost everybody gets worse between relapses
I understand that this is not a new idea and that many people consider multiple sclerosis to be "progressive" from the start in some sense. However, I was very surprised to see that such a low percentage of disability in relapsing MS is related to relapses.
@@orbitingdecay6797 I don't think so. Some people are stable for decades. PIRA is a phenomenon averaged over large numbers of people.
Thank you for this informative video. May I ask how PIRA is different from SPMS with activity?
Your question is a good one because in reality there may be no biological difference, but with PIRA in relapsing MS, the progression is presumably subtle and unrecognized.
see "scalfari all ms is ppms"
see "scalfari ms progression is just ageing"
I’m a unicorn and have NEVER fit inside the textbook of what MS is. I adore my neurologist, have been with him for over 17 years. I just wish more than a 25 foot walking test, strength and vision were done at appointments. Dexterity, cognitive, and speech need to be looked at as well. It also depends on the time of day, weather, etc at the time of your appointment as well. We MSers are snowflakes ❄️ for sure, but I’m also a unicorn 🦄 ! Great video. 🧡
Thanks for the compliment. Some neurologists do the 9-hole peg test to measure hand function and the SDMT to measure cognitive function, but these test are time consuming, and the results can fluctuate a lot.
For 4 years
can you do another giveaway lol
It’s not surprising, but very disheartening.
Why is one side of your mouth going up? Perhaps it is only in the video but it looks worrying.
I have partial paralysis of the left side of my face due to prior bell's palsy.
Do you know what else you can see retroactively besides progression? You can also see with long term use retroactively how much dalfampridine helps people. I have slowly and very gradually improved over the past seven years, and I can never tell that it’s helping one thing at the time but can see it when I look back.