I could cry watching this. It took several years for me to be diagnosed in my early 50s, then I was told my MS was benign, so offered no treatment. A few years later I was offered Tecfidera, which I continue to take. Just a few years after that, my EDSS is 6, I’ve had to stop work and move house, some days I need a rollator and I have numerous other problems and disabilities. I’m now told it is “too late” for me to try other treatments and that my MS is likely secondary progressive. I feel the NHS effectively put me “on hold” for several years by being so slow to diagnose, then categorising my MS as benign. By the time they felt it wasn’t benign, it was too late and the damage was done. I have an annual neurologist appointment (the last three were by phone) and basically try to manage on my own. I don’t feel the level of care provided by the NHS is good at all.
Thank you for sharing your story Vicky. I would definitely forewarn against the categorization of MS in benign in a younger person. It is ultimately only something we know retrospectively in an older person who has had MS for many decades.
My experience is to hit MS hard early to preserve function. I was 'diagnosed' with MS in 2008 but possible transverse militias around 1998. When diagnosed I walked with a limp and had odd pain in right shoulder. Took bata serion for about 1.5yr, fatigue increased and walking continued to deteriorate. My neurologist recommended I see a MS specialist he met at a conference. I did and the specialist recommended Tysabri. My walking improved, limp went away and fatigue improved. I didn't need fatigue meds for about 7yrs. It's now 2022 and I switched to Kesimpta 6 months ago, followup with neurologist next week. Hit it hard early, I'm 64 now and not in a wheelchair because we went to the big gun.
I'm glad you are doing well Kevin. Are you in the UK or somewhere else? Obviously the game was different in 1998, but retrospectively you have likely had MS for at least 24 years.
Thanks for sharing this Dr. Beaber. I would love to see a video on the U.S. healthcare system and choosing DMTs. It seems like the insurance companies have more say in our treatment options than the doctors sometimes. Your thoughts?
Thanks for the suggestion Vickie. The US healthcare system is just so diverse with so many different payers. You may appreciate this video on US health care cost statistics: ruclips.net/video/H4FV_D9nWYk/видео.html
I was diagnosed this year. My Neurologist said its likely I've had MS for 5 years and talked about my various strange symptoms throughout the years as being relapses. I saw GPs over the years with so many issues I now realise were MS, but no one thought to connect the dots until now. I've lost all faith doctors here in Scotland, to the point I think it's become some sort of mental trauma because \i get near anxiety attacks now at the thought of having to speak to my GP. I I wish more doctors here in the UK were like you, because no one has ever explained things to me as well as you do in your videos.
I was recently diagnosed with MS while living and working in England at the age of 24. My first episode happened in March this year with pins and needles on one side. My, more knowledgable than average, GP told me to basically wait to the second MS episode before I see a neurologist, so I decided to get a private MRI in Poland (where I'm originally from) instead. The MRI showed evidence of many active and inactive lesions and I was put on a steroid treatment immidiately. After that I was offered Tecfidera (within two weeks) but decided to instead wait for treatment in the UK. This was a major mistake. After a confirmed diagnosis (oligoclonal bands) from Poland, I still had to wait for two months to even see a UK nurologist for the first time. I decided to do it privately for £200, so that I could learn which drugs would be available to a person in my situation in England, but it only sped things up by two weeks. The private neurologist told me I only qualify for interferons at that point, so I went back to Poland and started taking Tecfidera. I had two more minor relapses (4 and 6 months after the first episode) and thanks to an MRI scan during the first one (showing new active lesions), my doctor was allowed to prescribe Kesimpta to me. This healthcare system does not instill much confidence in me as there is a clear deficit of neurologists. I do like the free and easy access to highly specialised MS nurses, but they're not allowed to make any DMT decisions, which puts the whole process in a standstill. Also, there is an overuse of MRI scans to meet these arbitrary regulatory requirements instead of actually helping patients. I wish your video was available to me 6 months ago as it would have saved me a lot of trouble, so it's great that you did it!
@@ragecorpsee , thanks! I think I probably described the situation in a slightly misleading way by accident (apologies for that): the GP wanted me to see a neurologist, considered MS as a cause and asked a nurological hospital for advice, but my symptoms weren't enough for me to get an actual NHS referral, and she said MS usually gets diagnosed by observing reoccurence of these potentially neurologocal symptoms. I did get a private appointment referral before the diagnosis in Poland though. I'm pretty sure that this lack of forward thinking and prevention is a systemic issue in the NHS disabling my GP from giving me a proper urgent NHS referral. My experience is that NHS does the bare minimum without much consideration for how it's going come back and haunt them later on. I guess it worked in my case, since I managed to just get treated in another country, but I can't imagine how would it be for an English person from lower socio-economic background in the same situation.
I love watching your videos they are so educational. I wish so much I could find a Dr. as passionate about MS as you are. I've been dismissed for years one Dr. after the next lacking any compassion. I will continue to advocate for myself however and hope that soon I will find someone who will take the time to actually hear me.
Just wanted to say thank you Dr B for the well explained clinical guidelines. I’m in Australia but much more convinced to accept ocrevus or Tysabri now recommended after some recent relapses after 8 years of lifestyle-only treatment. Very resssuring 😊 thank you ❤
At 45, I am a full-time wheelchair user, so I guess they would be taking me off my meds… That terrifies me. I am in Tennessee, and I still work, though from home, so I still have private insurance. I currently seem to be stable; just starting my second year on Tysabri. I am JC positive, so my tenure on this wonderdrug will likely be short. The only move I have left is Lemtrada after this. Dr. B, I sure wish more trials were available for us progressive folks. Trials that weren’t blinded against placebos. I withdrew from ATA188 last year due to progression. At present, I think I’m the only defunct tester.
Thank you for your video. Im receiving treatment under the NHS. I started ocrevus last February, but have not received another dose because my CD19 levels are below 1. Do you delay treatment with your patients because of this?
That’s very strange. I started ocrevus last September and already did my third dose in August ( I am in the US) They do blood work right before but would never stop my treatment unless I choose to or if they feel it’s not working for me. You are suppose to receive the treatment every 5-6 months. My recent MRI had no new lesion so my doctor confidently confirmed that ocrevus is working. NHS just doesn’t want shell out all that money for every patient so now there is a scale. Which I think is insane to it give the patients themselves the chose to pick the most effective DMT
Just curious...when was this algorithm published and why is there no mention of Kesimpta? I am recently diagnosed and have done a lot of research leading up to my choice of Kesimpta as my first DMT. I completely agree with an aggressive treatment strategy as opposed to an escalating strategy.
Previously using Tecfidera and Vumerity and had numerous new gadolinium enhanced lesions over two MRI scans over 1 year. That was enough for the neurologist and I to agree on switching DMT to Ocrevus. Will see now if a first line treatment gets the job done or not (I certainly hope so.) Thank you for your exceptional explanation of GB's criteria...I certainly hope nothing like this one makes it's way to the United States
I have a lot of thoughts on this, as not only am I UK based but also my neurologist is one of the ones named in this document (in fact my neurologist claimed "I wrote the algorithm", not sure what that means in practice though). First of all, I wonder how much this has all changed since 2018 when this was published? New drugs are available now, and when I was diagnosed this year I was offered very new drugs, which suggests to me that the algorithm might be a living document. Also, I wonder how far the algorithm actually determines treatment course. At a higher level, the NHS likes to talk about standardisation through these kinds of tools, but in practice things vary wildly depending on who you see. At the same time that my case was put through the algorithm it was also being discussed by a panel of neurologists, and I don't know how far the options I was given were from the algorithm and how far they were adjusted by the panel. I do think there is a lot of nudging done on a personal level - e.g. when my options were communicated to me, I was told that although I had been offered both moderate and highly effective DMTs, my neurologist felt I should be on a highly effective option. I remember that at the time this felt intuitively like the kind of internal politics thing that organisations do to try and smooth over an incommensurable difference of opinion between people with authority, such as the split between the escalation model and flipping the pyramid. My hunch is that my neurologist supports flipping the pyramid, and applies this through personal recommendation, rather than pushing for the algorithm itself to no longer allow the escalation model.
Thank you for being realistic and not sugar coating . I was diagnosed at the age if 18 and I’m 48. I’m on Ocrevus and doing very well. I was on Tecfidera for approximately 3 years.
Hey Gautam, was diagnosed earlier this year a couple months ago :/ Glad to hear you are doing well :) Did you take anything else over the last 20 ish years? Did you change diet/ exercise regime? :D looking for advice :) I am currently on tecfidera/ vumerity.
When you say doing very well are you still able to walk, function, work? I've just been diagnosed aged 28 and unsure what the future holds so perhaps you can give some hope as I really need it
@@beastywild - the problem is, and Dr. Biber alludes to this all the time, is that MS is so variable. So one person's experience or even the experience of a huge number of people is irrelevant to what you will experience. In fact it's even more variable than that because you can make lifestyle changes that over the span of several years can modify the progression of your MS. So when it comes to treatments you end up dealing in some pretty vague terms. Time is Brain. The longer you wait before treating the more irreparable damage is done to the brain. The lower the efficacy of the treatment the greater the damage inflicted on the brain over time. Now the above may not apply to you but they are statistically significant. So as patients we undergo some fairly radical therapies even though we're not sure we're THAT ill... because by the time the **** hits the fan not only is it too late but really you need to go back in time and start back then. You are, in effect, playing the odds. The other issue you will have is based on where you live. In the US you will have to pay for your treatment and it will cost 5 to 10 times as much as it costs elsewhere in the world. If you are anywhere else you may well have government healthcare that is perfectly adequate. If you're based in the UK you are on the NHS which spends as much time and effort as it possibly can in trying to prevent treatment as far as I can tell. So different areas, geographically, will skew your decision one way or another and you need to be prepared for that
@@__Wanderer hey… since I was diagnosed at an early age…I was involved in various studies that were conducted at the university hospital in London Ontario. The last study that I ca n recall I was taking a drug called Rocaltrol but the physician left in the middle of the study. I am working full time and have my own business for 20+ years. Over the years, I’ve minimized intake of processed food, I make an honest attempt towards eating fruits and have been eating 2 meals a day. I workout at least 3-4 times a week. I sincerely hope and pray that our doctors , researchers keep giving us hope and one day MS will be cured.
I can be short. I was considering moving to Britain from the Netherlands as my boyfriend lives there. After seeing this video, it's a definite no. My boyfriend can move here, I'm not going to risk my health. I already wasted a complete year on a first line drug with more lesions before I finally could move to Ocrevus. According to this algorithm, I should have wasted at least two years or more. Do they ever consider the effects of the permanent damage of just one new attack? Every time I get a cold, flu of some other sickness, every time I get too tired, every time I get too emotional, all my previous old symptoms come back, and I can't speak, I can't walk, I have no auditive memory and I see double. There is no side effect that scares me more than another attack. I want the right to choose the most efficient medication possible.
Options have improved dramatically in the U.K. but the N.H.S is obsessed with this kind of think tank guff. You should tell your nurse or consultant firmly that you want the most effective treatment a.s.a.p. I've had M.S for 18 years. After 5 or 6 disabling relapses in the first 2 years, treated with doses of steroids, I was in a wheelchair and the only option was Mitoxantrone. At that time there were trials with the combination of Mitoxantrone and Copaxone that were showing good results but I had to push to be given Copaxone. After a year or two I'd recovered to the point where I could walk with a cane and was strong and could drive. This lasted 12 years. After a bad relapse 6 months ago I think I made a mistake by agreeing to be switched on to Tecfidera instead of insisting on a stronger treatment and now after further deterioration I'm back to square one. Who knows if it would've made a difference but I urge anyone with M.S to insist on the most effective treatment even if you're advised to follow these guidelines.
IMHO: cookie cutter guidelines & algorithms may work for percentage of people, but never work for all. May b UK laws are such that they should b focused mostly on safety of highly effective meds & don't want to be liable for recommending them unless it's the last resort. For next video suggestions: Did anyone in the countries of socialized medicine or US evaluated all cause mortality for all these available DMTs? Thank you so much for making these amazing videos!
When I was diagnosed, the doctor's did I believe neurofilament light chain which is a biomarker of neuronal damage and disease activity. It suggested that I have a high value of increased neurogeneration and increased risk of progression, so you're telling me there's no way to predict this because science doesn't have the tech for it right now?
Neurofilament light chain levels correlate with disease activity modestly, but they do not accurately "predict" the future. We do not have any technology which accurately gives a prognosis in MS.
How infuriating! I agree that the Healthcare system in the US needs to be rethought so a medical emergency won't send someone into bankruptcy. On the other hand, people that say that single payer programs like that of England are a panacea for the world to adopt are wildly misinformed of the benefits of systems like the NIH.
Yeah the difference in medication between 2 attacks vs 1 attack + MRI activity is bizarre... The activity was just lucky to not cause anything visible that is all... every time there is activity that should count as a relapse imo as that spot could have impacted almost every function of the individual... he / she was just lucky that the brain was able to compensate in that instance. Just a game of chance :/ fully agree the "alternative first line drug" overview is laughable, very strange the stronger meds were removed for the first two RRMS scenarios... xD
I use the Budwig protocol..... organic. pristine essential fatty Acids...... Oil presse from Alibaba Keto.the body's repair system is fat burning. Glucose flight and flight. Fat for rest and repair......good luck ( just a share ) my 35 year.... Still walking.
@@DrBrandonBeaber I am soo sorry doctor I don't understand your English and thanks for answering me my mom apply ocrevus 2 injections and Pakistan doctors says 3rd injection 600gm apply six month later and six months are complet my mom apply next injection in December 2022 my mom is very stressed doctor this injections are the MS treatment Ms patients will be fine this injections
awesome video suprizingly since july 2021 my ms has been slightly active viva MRI but i just went to my nero agen yesterday as i had two elapses this year and have been avoiding steroids as I have adverse effects with my mental health and migraines .... my nero because of this boudry ive put down as i really am over the panic attacks when on it and manic issues ..... he has brighten up changing meds but wants to make sure my MRI shows changes before we decide to change from dimethyl-fumarate to a stronger drung ... and he was quick to get me out so i never really understand enough to make a decision of changing meds as since before 2021 my last real relpase was in 2012 lol thats not including my mild increase in all my symtpms over that time period meaning not suddon big changes ....but as f now ive been having more relapse like activity but only once did the MRI show small growth and thats when started to need a cain off and on ..... he said medclaid but im super worried of the heart issues .... after watching im not sure i got your real take on when to change ..... would you say only if there's change in MRI not just relapses without MRI activity
Its not set in stone at all. I was treated with tysabri first line, and hsct second line after 6 months on tysabri. Im also now starting ocrevus after hsct with no new activity
Again many thanks.....this guy empowers his clients......' That should be the standard of care'....it hasn't been my experience in the UK.... Many scars many relapses ...... No DMTS. 35th year : on Budwig protocol.12th year. Oil presses available on Alibaba..... Not a cure I have disabilities... But but.... Still walking still using arms... The NHS has issues .... Defo... Money:: The last Specialist I saw seemed to be ageing at faster rate then normal....I feel sorry for our Doctors.... Please a video on Dr Budwigs Approach... Pristine essential fatty acids. No oil with a shelf life......it's pro re myliation....
They’re looking to save $ Global MS group admin here- NHS is shit! Canada is similar but has it’s own issues- seperatly. Great video on a terrible idea. #Sharingiscaring
@@DrBrandonBeaber my Canadian warriors seem to have neurologist moving ( for higher wages) out of the area/ country- so due to the size of the country they are traveling further for actual care. Over the past year I’ve had at least - 6- I know that there is a NEED for neurologist ( especially MS ones) -
@Desire DeCove I'm in Sk and there is only one Neurologist that specializes in MS in the whole province. I have to drive 3 hours (6 total) for appointments. Considering this province has one of the highest MS rates in the entire country, we need to do better.
@@onelove021909 I hear you loud and clear- I run a global MS group- with many in Canada- yours is a familiar story- I fully agree- there are so many MS’rs in Canada- with minimal specialists/ or neurologists. Sending you a big motherly hug. Hang in there. ❤️
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I could cry watching this. It took several years for me to be diagnosed in my early 50s, then I was told my MS was benign, so offered no treatment. A few years later I was offered Tecfidera, which I continue to take.
Just a few years after that, my EDSS is 6, I’ve had to stop work and move house, some days I need a rollator and I have numerous other problems and disabilities.
I’m now told it is “too late” for me to try other treatments and that my MS is likely secondary progressive.
I feel the NHS effectively put me “on hold” for several years by being so slow to diagnose, then categorising my MS as benign. By the time they felt it wasn’t benign, it was too late and the damage was done.
I have an annual neurologist appointment (the last three were by phone) and basically try to manage on my own.
I don’t feel the level of care provided by the NHS is good at all.
Thank you for sharing your story Vicky. I would definitely forewarn against the categorization of MS in benign in a younger person. It is ultimately only something we know retrospectively in an older person who has had MS for many decades.
My experience is to hit MS hard early to preserve function. I was 'diagnosed' with MS in 2008 but possible transverse militias around 1998. When diagnosed I walked with a limp and had odd pain in right shoulder. Took bata serion for about 1.5yr, fatigue increased and walking continued to deteriorate. My neurologist recommended I see a MS specialist he met at a conference. I did and the specialist recommended Tysabri. My walking improved, limp went away and fatigue improved. I didn't need fatigue meds for about 7yrs. It's now 2022 and I switched to Kesimpta 6 months ago, followup with neurologist next week. Hit it hard early, I'm 64 now and not in a wheelchair because we went to the big gun.
I'm glad you are doing well Kevin. Are you in the UK or somewhere else? Obviously the game was different in 1998, but retrospectively you have likely had MS for at least 24 years.
Thanks for sharing this Dr. Beaber. I would love to see a video on the U.S. healthcare system and choosing DMTs. It seems like the insurance companies have more say in our treatment options than the doctors sometimes. Your thoughts?
Thanks for the suggestion Vickie. The US healthcare system is just so diverse with so many different payers. You may appreciate this video on US health care cost statistics: ruclips.net/video/H4FV_D9nWYk/видео.html
@@DrBrandonBeaber thanks! Some of those in,beds are shocking!
I was diagnosed this year. My Neurologist said its likely I've had MS for 5 years and talked about my various strange symptoms throughout the years as being relapses. I saw GPs over the years with so many issues I now realise were MS, but no one thought to connect the dots until now. I've lost all faith doctors here in Scotland, to the point I think it's become some sort of mental trauma because \i get near anxiety attacks now at the thought of having to speak to my GP. I I wish more doctors here in the UK were like you, because no one has ever explained things to me as well as you do in your videos.
I was recently diagnosed with MS while living and working in England at the age of 24.
My first episode happened in March this year with pins and needles on one side. My, more knowledgable than average, GP told me to basically wait to the second MS episode before I see a neurologist, so I decided to get a private MRI in Poland (where I'm originally from) instead. The MRI showed evidence of many active and inactive lesions and I was put on a steroid treatment immidiately. After that I was offered Tecfidera (within two weeks) but decided to instead wait for treatment in the UK. This was a major mistake. After a confirmed diagnosis (oligoclonal bands) from Poland, I still had to wait for two months to even see a UK nurologist for the first time. I decided to do it privately for £200, so that I could learn which drugs would be available to a person in my situation in England, but it only sped things up by two weeks. The private neurologist told me I only qualify for interferons at that point, so I went back to Poland and started taking Tecfidera.
I had two more minor relapses (4 and 6 months after the first episode) and thanks to an MRI scan during the first one (showing new active lesions), my doctor was allowed to prescribe Kesimpta to me.
This healthcare system does not instill much confidence in me as there is a clear deficit of neurologists. I do like the free and easy access to highly specialised MS nurses, but they're not allowed to make any DMT decisions, which puts the whole process in a standstill. Also, there is an overuse of MRI scans to meet these arbitrary regulatory requirements instead of actually helping patients.
I wish your video was available to me 6 months ago as it would have saved me a lot of trouble, so it's great that you did it!
your GP is an idiot giving random advice about stuff they don't understand, awful stuff glad to hear on a decent DMT it shouldn't be this hard...
@@ragecorpsee , thanks! I think I probably described the situation in a slightly misleading way by accident (apologies for that): the GP wanted me to see a neurologist, considered MS as a cause and asked a nurological hospital for advice, but my symptoms weren't enough for me to get an actual NHS referral, and she said MS usually gets diagnosed by observing reoccurence of these potentially neurologocal symptoms. I did get a private appointment referral before the diagnosis in Poland though.
I'm pretty sure that this lack of forward thinking and prevention is a systemic issue in the NHS disabling my GP from giving me a proper urgent NHS referral. My experience is that NHS does the bare minimum without much consideration for how it's going come back and haunt them later on. I guess it worked in my case, since I managed to just get treated in another country, but I can't imagine how would it be for an English person from lower socio-economic background in the same situation.
I love watching your videos they are so educational. I wish so much I could find a Dr. as passionate about MS as you are. I've been dismissed for years one Dr. after the next lacking any compassion. I will continue to advocate for myself however and hope that soon I will find someone who will take the time to actually hear me.
Just wanted to say thank you Dr B for the well explained clinical guidelines. I’m in Australia but much more convinced to accept ocrevus or Tysabri now recommended after some recent relapses after 8 years of lifestyle-only treatment. Very resssuring 😊 thank you ❤
Love watching your videos - so informational! I decided to hit it hard. Ocrevus - hoping it keeps MS at bay.
At 45, I am a full-time wheelchair user, so I guess they would be taking me off my meds… That terrifies me. I am in Tennessee, and I still work, though from home, so I still have private insurance. I currently seem to be stable; just starting my second year on Tysabri. I am JC positive, so my tenure on this wonderdrug will likely be short. The only move I have left is Lemtrada after this.
Dr. B, I sure wish more trials were available for us progressive folks. Trials that weren’t blinded against placebos. I withdrew from ATA188 last year due to progression. At present, I think I’m the only defunct tester.
Dr. Beaber, could you do a video explaining MS to children?
Do you think oral Prendisone at lower starting dose with taper is safe? Like over 8 weeks? Starting at 60mg and tapering over 2 months?
Thank you for your video. Im receiving treatment under the NHS. I started ocrevus last February, but have not received another dose because my CD19 levels are below 1. Do you delay treatment with your patients because of this?
That’s very strange. I started ocrevus last September and already did my third dose in August ( I am in the US) They do blood work right before but would never stop my treatment unless I choose to or if they feel it’s not working for me. You are suppose to receive the treatment every 5-6 months. My recent MRI had no new lesion so my doctor confidently confirmed that ocrevus is working. NHS just doesn’t want shell out all that money for every patient so now there is a scale. Which I think is insane to it give the patients themselves the chose to pick the most effective DMT
Thanks so much for always providing clear explanations for us all!!
Just curious...when was this algorithm published and why is there no mention of Kesimpta? I am recently diagnosed and have done a lot of research leading up to my choice of Kesimpta as my first DMT. I completely agree with an aggressive treatment strategy as opposed to an escalating strategy.
4 your support !
Previously using Tecfidera and Vumerity and had numerous new gadolinium enhanced lesions over two MRI scans over 1 year. That was enough for the neurologist and I to agree on switching DMT to Ocrevus. Will see now if a first line treatment gets the job done or not (I certainly hope so.) Thank you for your exceptional explanation of GB's criteria...I certainly hope nothing like this one makes it's way to the United States
The N.H.S in the U.K is absolutely obsessed with this kind of thinking. Middle management box ticking.
I have a lot of thoughts on this, as not only am I UK based but also my neurologist is one of the ones named in this document (in fact my neurologist claimed "I wrote the algorithm", not sure what that means in practice though).
First of all, I wonder how much this has all changed since 2018 when this was published? New drugs are available now, and when I was diagnosed this year I was offered very new drugs, which suggests to me that the algorithm might be a living document.
Also, I wonder how far the algorithm actually determines treatment course. At a higher level, the NHS likes to talk about standardisation through these kinds of tools, but in practice things vary wildly depending on who you see. At the same time that my case was put through the algorithm it was also being discussed by a panel of neurologists, and I don't know how far the options I was given were from the algorithm and how far they were adjusted by the panel.
I do think there is a lot of nudging done on a personal level - e.g. when my options were communicated to me, I was told that although I had been offered both moderate and highly effective DMTs, my neurologist felt I should be on a highly effective option. I remember that at the time this felt intuitively like the kind of internal politics thing that organisations do to try and smooth over an incommensurable difference of opinion between people with authority, such as the split between the escalation model and flipping the pyramid. My hunch is that my neurologist supports flipping the pyramid, and applies this through personal recommendation, rather than pushing for the algorithm itself to no longer allow the escalation model.
Thank you for being realistic and not sugar coating . I was diagnosed at the age if 18 and I’m 48. I’m on Ocrevus and doing very well. I was on Tecfidera for approximately 3 years.
Hey Gautam, was diagnosed earlier this year a couple months ago :/ Glad to hear you are doing well :) Did you take anything else over the last 20 ish years? Did you change diet/ exercise regime? :D looking for advice :) I am currently on tecfidera/ vumerity.
When you say doing very well are you still able to walk, function, work? I've just been diagnosed aged 28 and unsure what the future holds so perhaps you can give some hope as I really need it
@@beastywild - the problem is, and Dr. Biber alludes to this all the time, is that MS is so variable. So one person's experience or even the experience of a huge number of people is irrelevant to what you will experience. In fact it's even more variable than that because you can make lifestyle changes that over the span of several years can modify the progression of your MS.
So when it comes to treatments you end up dealing in some pretty vague terms.
Time is Brain.
The longer you wait before treating the more irreparable damage is done to the brain.
The lower the efficacy of the treatment the greater the damage inflicted on the brain over time.
Now the above may not apply to you but they are statistically significant. So as patients we undergo some fairly radical therapies even though we're not sure we're THAT ill... because by the time the **** hits the fan not only is it too late but really you need to go back in time and start back then. You are, in effect, playing the odds.
The other issue you will have is based on where you live. In the US you will have to pay for your treatment and it will cost 5 to 10 times as much as it costs elsewhere in the world. If you are anywhere else you may well have government healthcare that is perfectly adequate. If you're based in the UK you are on the NHS which spends as much time and effort as it possibly can in trying to prevent treatment as far as I can tell. So different areas, geographically, will skew your decision one way or another and you need to be prepared for that
Thanks for sharing. Did you change from tecfidera due to a flare, side effects, or a different reason?
@@__Wanderer hey… since I was diagnosed at an early age…I was involved in various studies that were conducted at the university hospital in London Ontario. The last study that I ca n recall I was taking a drug called Rocaltrol but the physician left in the middle of the study.
I am working full time and have my own business for 20+ years. Over the years, I’ve minimized intake of processed food, I make an honest attempt towards eating fruits and have been eating 2 meals a day. I workout at least 3-4 times a week.
I sincerely hope and pray that our doctors , researchers keep giving us hope and one day MS will be cured.
I can be short. I was considering moving to Britain from the Netherlands as my boyfriend lives there. After seeing this video, it's a definite no. My boyfriend can move here, I'm not going to risk my health. I already wasted a complete year on a first line drug with more lesions before I finally could move to Ocrevus. According to this algorithm, I should have wasted at least two years or more.
Do they ever consider the effects of the permanent damage of just one new attack? Every time I get a cold, flu of some other sickness, every time I get too tired, every time I get too emotional, all my previous old symptoms come back, and I can't speak, I can't walk, I have no auditive memory and I see double. There is no side effect that scares me more than another attack. I want the right to choose the most efficient medication possible.
PPMS Sufferer(UK) yes , suffering . NHS very ,very poor , almost none existing !
Were you offered any disease modifying therapy such as rituximab/ocrevus/mayzent or no?
PPMS for 13 years , 4 appointments with MS nurse . 2 MRI scans . Refused Ocrevus due to inactivity of disease .
Options have improved dramatically in the U.K. but the N.H.S is obsessed with this kind of think tank guff. You should tell your nurse or consultant firmly that you want the most effective treatment a.s.a.p.
I've had M.S for 18 years. After 5 or 6 disabling relapses in the first 2 years, treated with doses of steroids, I was in a wheelchair and the only option was Mitoxantrone. At that time there were trials with the combination of Mitoxantrone and Copaxone that were showing good results but I had to push to be given Copaxone. After a year or two I'd recovered to the point where I could walk with a cane and was strong and could drive. This lasted 12 years. After a bad relapse 6 months ago I think I made a mistake by agreeing to be switched on to Tecfidera instead of insisting on a stronger treatment and now after further deterioration I'm back to square one. Who knows if it would've made a difference but I urge anyone with M.S to insist on the most effective treatment even if you're advised to follow these guidelines.
My 1st MS symptom was a grand mall seizure in my sleep. I think it could be Lyme's disease because mine's disease and MS mimic each other
If JCV titer is not accurate after you’ve been on an immunosuppressant, what does that mean if you’re JCV negative?
If you are negative, it is accurate. The JCV index is not accurate in people who have not received immuosuppressants. Talk to your own provider.
IMHO: cookie cutter guidelines & algorithms may work for percentage of people, but never work for all. May b UK laws are such that they should b focused mostly on safety of highly effective meds & don't want to be liable for recommending them unless it's the last resort.
For next video suggestions: Did anyone in the countries of socialized medicine or US evaluated all cause mortality for all these available DMTs?
Thank you so much for making these amazing videos!
Jay approved ! that was good info 2 know /see👨🔧 Dr. Barndon
Thanks
How can i be treated by you when living in Berlin?
After 4 years on ocrevus, the diminishing returns have begun. I'm back to needing my cane after 2 months, rather than 4. Time for lemtrada lol
When I was diagnosed, the doctor's did I believe neurofilament light chain which is a biomarker of neuronal damage and disease activity. It suggested that I have a high value of increased neurogeneration and increased risk of progression, so you're telling me there's no way to predict this because science doesn't have the tech for it right now?
Neurofilament light chain levels correlate with disease activity modestly, but they do not accurately "predict" the future. We do not have any technology which accurately gives a prognosis in MS.
@@DrBrandonBeaber Thank you :)
How infuriating! I agree that the Healthcare system in the US needs to be rethought so a medical emergency won't send someone into bankruptcy. On the other hand, people that say that single payer programs like that of England are a panacea for the world to adopt are wildly misinformed of the benefits of systems like the NIH.
Nhs uk needs to approve Ublituximab (Briumvi)
Yeah the difference in medication between 2 attacks vs 1 attack + MRI activity is bizarre... The activity was just lucky to not cause anything visible that is all... every time there is activity that should count as a relapse imo as that spot could have impacted almost every function of the individual... he / she was just lucky that the brain was able to compensate in that instance. Just a game of chance :/ fully agree the "alternative first line drug" overview is laughable, very strange the stronger meds were removed for the first two RRMS scenarios... xD
my mom is Ms Patient she is so saad and weeping my mom legs is not working
I use the Budwig protocol..... organic. pristine essential fatty Acids...... Oil presse from Alibaba
Keto.the body's repair system is fat burning.
Glucose flight and flight. Fat for rest and repair......good luck ( just a share ) my 35 year.... Still walking.
Is she care for within the NHS? What are her experiences?
@@DrBrandonBeaber I am soo sorry doctor I don't understand your English and thanks for answering me my mom apply ocrevus 2 injections and Pakistan doctors says 3rd injection 600gm apply six month later and six months are complet my mom apply next injection in December 2022 my mom is very stressed doctor this injections are the MS treatment Ms patients will be fine this injections
@@DrBrandonBeaber I am soo sorry my English is wrong but I hope you are understand?
awesome video suprizingly since july 2021 my ms has been slightly active viva MRI but i just went to my nero agen yesterday as i had two elapses this year and have been avoiding steroids as I have adverse effects with my mental health and migraines .... my nero because of this boudry ive put down as i really am over the panic attacks when on it and manic issues ..... he has brighten up changing meds but wants to make sure my MRI shows changes before we decide to change from dimethyl-fumarate to a stronger drung ... and he was quick to get me out so i never really understand enough to make a decision of changing meds as since before 2021 my last real relpase was in 2012 lol thats not including my mild increase in all my symtpms over that time period meaning not suddon big changes ....but as f now ive been having more relapse like activity but only once did the MRI show small growth and thats when started to need a cain off and on ..... he said medclaid but im super worried of the heart issues .... after watching im not sure i got your real take on when to change ..... would you say only if there's change in MRI not just relapses without MRI activity
Completely agree
thats what we dream for right, and me in Berlin, i will visit a private doctor at least cant trust the hospitals in that question
Its not set in stone at all. I was treated with tysabri first line, and hsct second line after 6 months on tysabri. Im also now starting ocrevus after hsct with no new activity
did you get hsct on nhs..?
@@barbaradascalos4411 i did
Again many thanks.....this guy empowers his clients......' That should be the standard of care'....it hasn't been my experience in the UK....
Many scars many relapses ...... No DMTS.
35th year : on Budwig protocol.12th year. Oil presses available on Alibaba.....
Not a cure I have disabilities... But but.... Still walking still using arms...
The NHS has issues .... Defo... Money::
The last Specialist I saw seemed to be ageing at faster rate then normal....I feel sorry for our Doctors....
Please a video on Dr Budwigs Approach...
Pristine essential fatty acids. No oil with a shelf life......it's pro re myliation....
Nice. As an nhs dr i always hated how they operate nowadays. Full of unnecessary politics
They’re looking to save $
Global MS group admin here- NHS is shit! Canada is similar but has it’s own issues- seperatly.
Great video on a terrible idea.
#Sharingiscaring
What issues have you had with the Canadian system in terms of MS care?
@@DrBrandonBeaber my Canadian warriors seem to have neurologist moving ( for higher wages) out of the area/ country- so due to the size of the country they are traveling further for actual care. Over the past year I’ve had at least - 6-
I know that there is a NEED for neurologist ( especially MS ones) -
@Desire DeCove I'm in Sk and there is only one Neurologist that specializes in MS in the whole province. I have to drive 3 hours (6 total) for appointments. Considering this province has one of the highest MS rates in the entire country, we need to do better.
@@onelove021909 Wow. Crazy.
@@onelove021909 I hear you loud and clear- I run a global MS group- with many in Canada- yours is a familiar story- I fully agree- there are so many MS’rs in Canada- with minimal specialists/ or neurologists. Sending you a big motherly hug. Hang in there. ❤️
Here is my opinion. Ppms 34 years.
Stop wasting time and money. They don't help(DMT)
Nhs Scotland is shocking
What have you experienced with their healthcare system.
Slow and backwards, they don't listen properly
I have to agree. Sent from pillar to post with lots of disagreement between doctors and most physicians avoiding diagnoses wherever possible.
You're positivity is beautiful ❤️!! Do not waste another day - Promo_SM!!