It’s not just the doctors that should know this, it’s the insurance companies that need to know and be on board. So many meds are being denied simply because the low efficacy drugs were not attempted first.
I tried many DMTs over the course of my MS journey. The best treatment (for me) has been regular exercise/stretching and limiting stress and anxiety. Muscle relaxer before bedtime to limit leg spasms. Thanks Dr.Boster for taking the time to make these videos.
Exercise is so super important for us with MS and so is limiting stress which can be hard. I'm exercising on my bike while watching this! Unfortunately, I don't yet know how to lower stress while having two teens in my home 😅
I really appreciate and recommend this for ALL new patients! I finally landed on a higher efficiency med when I was almost 50. I was diagnosed at thirty and am going to lve with the nearly 20 years of brain damage that might have been avoided. It sucks. 😢
Unfortunately I am living proof of what Dr. Aaron is saying. I was first diagnosed because of an optic neuritis, but MRI already showed spinal lesions. I was prescribed a low efficacy drug and fully recovered. One year later, another attack, worse than the first, left my right eye sight permanently impaired and a lot of permanent symptoms in my legs. Since then, I am on Ocrevus, and apparently had no progression. Anyway, my life quality got significantly worse after the second attack, the constant symptoms are always reminding me of the disease. So, if you are reading this, whenever you can choose which way to go on your treatment, please consider the most effective alternative.
Same here...initially dx w RRMS 30 yrs ago. I'm still surviving but I'm not as sharp as I used to be... Avonex was all I had back then UGH!!!😊 Happy to still care for my dogs and walk daily but it's harder every day
I am so fortunate that my neuro recommended Tysabri from day one, 18 months after my first symptom. I know it made a huge difference in my journey with MS.
I wish all neurologists saw things the way you do. I remember where I was 20 years ago, a small amount of accumulated disability. When my MS was very active, I begged my doctor to talk about Tysabri. He did not want to. He recommended I stay on Copaxone, and start pulse steroids. Three bad relapses later, MUCH more permanent disability, he sent me to an MS doc at the Cleveland clinic. He recommended Cytoxan (it was a terrible experience). Fast forward two years, moved back to my home state, went back to my first awesome MS doctor from a few years earlier, she started me on Tysabri right away, and I stabilized. But it was too late. I had so much permanent disability that today I wonder where I'd be right now if I had had a better doctor when my MS was super active. It's so depressing to think about. My life is completely different.
So fantastic! Truly appreciate your message. I am living my best life in spite of MS. But if you had been my neurologist 30 years ago, it's very possible that I would have less permanent disability than what I do have. God bless you, Dr Boster. Please continue your messages. Luv, Deneen (pump girl in Ohio & Michigan)
Thank you so much for posting this video! I would also add: get an MS specialist, not just a regular neurologist to treat you. I was DX when I was 21 and the regular neurologist that I went to said “you’re young so we can do nothing and treat the relapses with steroids, or you can start a mild MS therapy” I understand he was acting on the studies available at the time, but 20 years later I see how wrong this path was and I had to become my own advocate for actively treating my MS. Anyone that was just DX: Bring a SWAT team to that knife fight! Your future self will thank you!
Been on 4 meds since I have had this disease. You are absolutely correct Doctor Boster, that’s the way the system works unfortunately! I wish you can clone yourself so we all can have you as our neurologist.
Hello everyone, during the pandemic I was fortunate to have Dr. Boster as my MS doc, I learned a lot. Prior to contacting Aron I had already started and finished Mavenclad, I was one of the first. That was 2019, I have yearly scans that show no new disease activity and with 0 known side effects. This probably sounds like a promo but it's not, I'm only talking about myself. As soon as the pandemic was declared over I could not associate with Aron anymore, unfortunately we have not communicated since and I don't travel anywhere, so I won't make it to the center. I truly wish I could go back to 2005 when I was diagnosed and able to seek a specialist and have that drug available. I would no doubt still be working and doing most of things I liked doing. Please take advantage of what this Dr. is saying, it might possibly help you retain your way of life. Again, this only me talking and hoping to help a fellow MS'r live a better life!! Happy Holidays everyone.
Can you find your closest MS center? I found Vanderbilt and feel very lucky. In a medical city like Memphis I can't believe that I was limited to a total of two neurologists and one practice were surrounded by 11 hospitals. He doesn't even follow the McDonald criteria. Never assessed my vision, my cognitive ability or my ability to ambulate We have mobile stroke units in Memphis FFS! So I'm happy to travel 6 hrs round trip to see them
Can you find your closest MS center? I found Vanderbilt and feel very lucky. In a medical city like Memphis I can't believe that I was limited to a total of two neurologists and one practice were surrounded by 11 hospitals. He doesn't even follow the McDonald criteria. Never assessed my vision, my cognitive ability or my ability to ambulate We have mobile stroke units in Memphis FFS! So I'm happy to travel 6 hrs round trip to see them
You are incredible, I have been given numerous other DMT's before being given the drug I asked for, I was denied the drug I asked for in the UK. That DMT is Lemtrada, I was pushed in various different directions. You are correct Dr. Boster.
omg! The contraception analogy is both hilarious and spot on! Just when I think I can’t love our Dr B any more than I already do, he pulls something like this and I go “ok, I just loooooove him more” 😍😍😍
Insurance providers are part of the problem. I was first put on Copaxone, but after a MRI and follow up with MS specialist, he basically said throw it out and we will put you on Kesimpta. The issue was the insurance providers won't sign off until something with lower efficacy was tried...
The injection fatigue is true. After 7 years injecting myself (and Rebif is not that bad, when used through the Rebismart machine), I was so over it. My body hurt even before I injected. And it was a unpleasant routine even after all those years. I switched to Ponvory as soon as they approved it here and I felt very relieved. A pill in the morning is absolutely not a problem and I feel much better.
I was on a low efficacy med before you became my neuro and I was so happy that you understood my dissatisfion with it and championed for me to go on a better DMT! Thank you for listening and being supportive of all your patients and community!
I started my new year out with you Dr Boster and my word all year was success...it's been a good year and I am glad to see you here as it comes to a close..I'm undiagnosed MS...and I'm figuring out my own path through this thing.
Thumbnail was funny. Love your sense of humor. Great video (as usual). My first neurologist was the escalation type. Terrible bedside manner as well. Switched to my neurologist I have now and he is along the same lines of your thinking. And he’s been great! It really is all about the physician. We have to have a great relationship and trust our neurologist.
I'm in SA and I'm allowed to see a trainee neurologist twice a year, does nothing for me 😔 and it's a different young, knows nothing person everytime 😔
Great video! I started Tysabri after maybe a year or so on Copaxone and then Rebif until Tysabri beacame available. I REALLY pushed for Tysabri and I honestly have almost no MS symptoms anymore after taking Tysabri for many years. I am 59 now and I am so much better than I was at 35 in regards to MS symptoms. I DID switch to Ocrevus because of the JC virus. I had a lot of issues with the pre-med steroids etc. I have not taken anything in the past 3 years. My choice. I do understand a MRI only is a tool and not to read too much into the fact my MRI's have been good. No changes. One Neurologist has the opinion I may be able to stay off treatment completely because of my age and how I have done after years on the 'big guns'. I do honestly feel better off everything BUT I do understand the dangers. I am going to see my former Neurologist who is back after 3-4 years at another hospital across the country. If I go back to something it would be Kisempta. Thank you for informing me so I can make better decisions. :)
Escalating method patient here - was offered Aubagio and afterwards Tecfidera, both pretty low efficacy. Had a ton of spots on my MRI already like 5 years ago before starting any meds so yeah... On Kesimpta now though! 💪💪💪💪💪💪
My greatest fear is PML it terrifies me. So much it prevents me from trying new meds. I saw what it did to a fellow MS patient and it was horrible 3 months after getting PML she died a horrible death. Dr.Boster how do I get passed this yes i understand its like 1 to 2% chance but its not a chance I'm willing to risk. PML is worse than MS most people i found don't live but 3 to 4 months after being diagnosed with PML. Why can't they come up with just 1 DMT that doesn't have the PML. Please help me understand why can't thet make a DMT that does not pose this risk Please. 😢
The risk is very low. For me, being on Vumerity, I got blood work done every 3 months to make sure there was no risk for PML. After one year, it's every 6 months. If they see a certain risk in your lab work. you need to stop the meds before it can get worse. I've had med anxiety after my diagnose, so I know what you fear. Find a good clinic or neuro and ask them how they manage such a risk. They will explain how they monitor your health and it will give you more confidence going forward.
Thank you for explaining. I can't handle the IV a lot so Tissue was not for me. I take generic Receivers since my insurance will not pay for the brand name, but no relapses in 10 years. My disability is getting more all the time. Not sure what to do but keep hanging in there and trying to move about more.
More effective does not necessarily mean worse side effects. I started with Interferons and had always very unpleasant flue like symptoms. With ocrevus I didn't have any side effects.
Same here, started out on injections, then Tecfidera, then lastly Ocrevus which I’m very happy with now after 20 years of my life being taken away from me
I started off with Tecfidera But, had to come off of it & now on Tysabri. Doing well as one with MS can be doing. Only issue, dealing with traffic to get to & from.
my son is 27 and he hardly can walk or use his hands coz of tremor. they put him Aubagio now, coz insurance didn't approve Macvlan. i dont know what to do to help him.. it sucks how insurance works here sometimes. he used Kesimpta but no luck.. now Aubagio. i pray every day for a miracle and for you guys. 🙌🙌🙌🙌
I'm going to be 38 soon i was diagnosed in 2021 symptoms for 5 years before, in short i was blurred and double vision, foot drag, vertigo, choking, heart palpitations and way more. STOP eating sugar and carbohydrates and your life will change. Its the constant inflammation from this food that's making it worse and killing us. i feel like a teen again and have the energy of one with RARE minor symptoms no meds. There's a whole different world outside of this one.
please understand food plays a major role in inflammation and sugar with carbohydrates especially added sugar and processed carbohydrates make it worse, I stopped eating these and every month I got better and better. Please.
I had a massive ms attack and was hospitalized for a week and given steroids. I never recovered fully and still have to use a cane. Several months later I had another attack that took my eyesight because I was never given the option of a dmt by my neurologist? My eyesight has never fully returned either but at least I do not have double vision anymore. I had symptoms for years prior but fought through it until I no longer could. I was first diagnosed at age 44.
I am only 46 years old. I was just diagnosed with PP MS in April 2024, after a severe roll over car accident I was told I shouldn't had survived. I finally found a competent Neurologist. I supposedly have had MS since about 14 years old. The brain damage that has been done, means I have a brain of a 70 year old. I finally started a high rolling DMT drug, that yes, I have to inject myself with. However, it is helping. Now that I think back to my teenage years, it makes sense. I was a great gymnast, until I started having balance issues, and more. It's a shame that nobody paid attention when I was seeing 7 different doctors for all of my issues. Had they all talked, or thought outside that box, I wouldn't be as bad off as I am. but it is what it is. I can't change the past now can I? But I can kick a$$ back, in the present. :) My husband and I, really appreciate your videos. So does my oldest son, who also, unfortunately, has MS as well. His was thankfully caught early. Before my MS was even found.
I wish this had been clearer back in 2001 when I had my first MS attack! I saw Dr. Randy Schapiro at the time, who was amazing. At the time he leaned toward "probable MS" (based on a technicality, sort of) and said 15% of people never had another MS attack so he wanted to hold off on meds in case I turned out to be one of those people. I didn't have another clear attack until 2007 (at which point he started me on Copaxone), but after an attack in 2021 I suddenly developed a lot more problems and I wonder if the early damage set me up for my current struggles, even though my disease course seemed relatively mild for many years.
Excellent advice. Thanks Dr B. I don’t understand why the OG drugs from the 90s are still being used by older patients. It seems neurologists are hesitant to change from these old drugs if the patient is doing well which I understand but if they’re only slightly better than placebo why bother? My mother in law was on rebif for over 15 years before getting injection fatigue and her neuro switched her to Tecfidera. I was diagnosed 3 years ago and started on Tysabri, but became JCV positive after 5 months and switched to Ocrevus. Thankfully, I have little disability and that’s exactly why I opted for the most efficacious treatment as recommended by my neurologist.
Hi Dr. Aaron Boster (😂 wanted to show you i know how to write your name). First, i'm a fan of you (my neurologist would never go as far as you do to explain anything to me, so i learn 200% more with you than with my neuro, do they even know what is MS?🤔). Second, i know what you think about escalating... but im so scared to go up... im on Aubagio since a year, was diagnosed in feb 2023 but should have been in 2017 (doctor's error..), could you kinda rate the different meds on a efficacy scale on your next live stream please? I dont want to go on ocrevus, i loose conciousness when i have a simple vaccine 😂. Thx Dr. Boster, have a nice day!
I got put on the least effective treatment (and have to inject myself weekly) - I want to shove this video in the previous neurologists face for using the escalation method 😭😭
The only drug I've been on for the last couple of years, is Fampyra. It's helped very slightly, but not what I was hoping. The side effects of the other DMT's are worse than what my MS effects are, so I'm not really sure if I'd want other DMT's.
I am currently fighting this fight with insurance companies in Canada. They have said I am not eligible for Ocervus even though I am progressing while on Tecfidera because I am not having relapses. According to the companies, I am only eligible if I have had 2 relapses in the last year. I am experiencing PIRA in a major way, but they will not cover my medication change. My neurologist is in my corner but insurance is not.
So for the past 4days I've been feeling ill. I went to the A and E. My bloods came back fine. Today I've had this rope type feeling around around the middle of my chest. It went away after about 10mins. It was tight and left me gasping for air. Typed in my symptoms and came up with ms 😢 I'm hoping it's wrong.
Doctor, thank you for your dedication. I have a dude. Why the most clinical trials are designed sgainst low efficacy DMT such as Aubagio.I am on BTKi clinical trial , remibrutinib versus Aubagio. And obviusly i am not sure if this the best approach for managingw th MS 😅
In the Netherlands they still use escalation method. I tried to have ocrevus at the start but my Dr. told me about someone who "died" from it. Horrific bed side manner. Currently on Vumerity as I assumed he knew what he was talking about as a Neurologist (talked to 2 actually who said the same). Now I am about 2.5 years in and from my last scan there were no changes luckily ( about 4-5 months ago, once yearly scan). I also think this is playing with fire though as you say, if something happens it is too little too late. Why risk rolling the dice when you can smash it with a sledgehammer and know with certainty that you are doing everything within your power to keep things under control. As soon as I see any changes on my MRI I want to use it to escalate to Ocrevus. Is this the best medication in your opinion?
I’m on a high efficacy DMT and happy with the results. Side effects aren’t horrible, but are present. That said, I have good insurance and help from the maker of the drug I use to pay for infusions. Is there any reason to believe that some of the decisions about which drug to try first are based on cost and/or insurance coverage? Good info from video, btw.
I'm on Aubagio and was diagnosed last year after hospitalization. My eye wasn't moving, so I lost vision and couldn't walk on my own. I'm recovered fully I'd say minus the constant neck and shoulder pain I developed in the hospital. I had 4 lesions at the time. It's been over a year and I'm barely having my next set of baseline MRIs, the first one of my spinal cord because for whatever reason they neglected to do it with my brain MRI. I'm at a loss. I'm so unsure what to do next.
I think if my previous doc put me on a more effective med I wouldn’t be in a wheelchair. Since I’ve changed to UAB I’m getting the best treatment possible, should have changed yrs ago!!
Hi, Dr. Boster. I am on Teriflunomide (aubagio) and Baclofen. when i was on augagio i had no issues, but since i was switched to teriflunomide (small white pill) i am having tingling and itching in my left hand. when I was on the blue version of the pill i had absolutely NO issues. is this even a side effect?
This is exactly what my insurance wants, currently on kesimpta, but its been denied, until I try other dmt's. Dr. Are you able to tell how long someone, has had MS, by looking at an MRI.
@ thank you. My son is symptom free (except mild fatigue) and MRI this month shows no progression or new lesions x 4 years. He’s 26. Thank you for all your videos. YOU MAKE A DIFFERENCE TO SO MANY!
مرحبا دكتور بوستر لقد شاهدت بعض فيدوهاتك عن مرض التصلب المتعدد واريد ان اخذ رائيك انا اعاني من صعوبه في المشي اعرج قليلا وقد اجريت الرنين المغناطيسي وضهرت لدي بعض النقاط البيضاء علا الدماغ ولكن دكاتره الاعصاب قالو انه ليس تصلب ولكن اجريت البزل القطني للتاكد ولكن بعد البزل القطني ساء المشي عندي اكثر لدي ميلان عند المشي واهتزاز في جسمي عند المشي انا قلقله جدآ هل البزل القطني يؤثر علا المشي ارجو الرد
لا ينبغي أن يؤثر البزل القطني على المشي. قد يكون من المفيد أن يتم تقييمك من قبل معالج فيزيائي (بالإضافة إلى طبيب الأعصاب بالطبع) للمساعدة في تحسين آليات المشي لديك. حظا سعيدا.
I have MS. And a doctor with the worst bedside manner. I asked for a different doctor once and got an amazing one that left the area and was given back to him. My quality of life is horrible I'm about to lose my job, I can't focus. I'm having huge issues with executive function. And no matter how much I asked for help because 10 years ago I struggled with opioid addiction he won't do anything except for tysabri. Which is great I don't mind taking the medication even though I have a JC virus level. But I also need some of these symptoms that I'm going to have the rest of my life managed also not just the disease. What do I do?
@@AaronBosterMD Good morning Aaron, I Hope you dont mind me messaging you on YT. Would it be posible to have a paid consultation or Advice please? I have RRMS & have had it for 30 +years. I am 53 yrs & I have been lucky enough to be able to enjoy my work & generally had good health in between the up & downs of MS which was thankfully relatively Mild. My life changed massively after having 4 shots of C vaccine & having covid a month after which was mild & didnt seem to effect me much. The constant Daily health issues started from there, Daily constant headaches,nausea,extreme fatigue (none Being the Same at all as of my previous 30 year experience) ive now been of work for a year & a half. I moved to Spain 7 years ago & pretty much had good health útil covid. I left the uk unsucsessful with two seperate DMD’s that i couldnt tolérate, so i was happy to allow my body to go into a natural state before trying some thing new. Ive only just got a neurologist appointment becarse i thoughtbit was relaspe, now im sure it’s not. I finally have a MRI next week & then wait to see a new young neurologist which wants to Start me on new drug. I dont think i am in relaspe rather than a post viral syndrome type thing as after covid i was constant ley sick, throat infection lasted 3 months, 3 flues in 3 months,Water infections, stomach bug… one after another. My body is still the same but i do feel my Spirit & energy has lifted a little. I am super healthy re foods, dont drink or smoke. I have always been into fitness & working hard in between my MS blips, no i have Become some one else after 30years. Now Any physical exercise (fine that day) the next i feel like i have run a 50K marathon, fatigue is a understatement. Daily headaches, nausea & this fatigue. I would love it if you could give me some advice please, it’s been a loooong frustrating road & im hoping for some positive information. Thank you very much for taking the time to reading this, im sure you are extrémly busy. Apologíes for my grammer, my iPad has recently had a im going to try & convert Everything into spanish¡ obviously clicked on something… Kind regards Laura Seaman
Is this escalation model dictated by researchers/scientist/doctors or is this recommended by insurance companies? My experience is with insurance denying everything even though it's doctor recommended. It feels like to me that the federal government is dictating my treatment. Insurance companies are doing what the government tells them is acceptable. Insurance fraud is real and I have worked with enough private practices and hospitals to know any respectable facility or doctor won't risk fraud. Just curious....
@@AaronBosterMD I believe you've used the birth control analogy in the past, I thought it was perfect, so I've used it to explain to family/people how the Ocrevus I take works. They were under the assumption that Ocrevus would repair the damage my PPMS has done. I explained to them that the "children" PPMS has given me aren't going away, but hopefully I won't get anymore "children" in the future.
I tell people blithely: "We're pretty good at stopping inflammation. We're not very good a growing nerve tissue."
Amen, my brother from another mother!
Imagine the day we are able to reverse spinal cord injuries
I am so grateful every minute of every day that you are my daughters Dr on this journey.
I appreciate you and the creator both so much for helping it all make sense and inspiring hope.
Is there anything for SPMS “active “?
Every MS patient and every MS neurologist needs to watch this, it's so important.
It’s not just the doctors that should know this, it’s the insurance companies that need to know and be on board. So many meds are being denied simply because the low efficacy drugs were not attempted first.
I tried many DMTs over the course of my MS journey. The best treatment (for me) has been regular exercise/stretching and limiting stress and anxiety. Muscle relaxer before bedtime to limit leg spasms. Thanks Dr.Boster for taking the time to make these videos.
Exercise is so super important for us with MS and so is limiting stress which can be hard. I'm exercising on my bike while watching this! Unfortunately, I don't yet know how to lower stress while having two teens in my home 😅
That's not a DMT.
Lordy
Like did you not hear him the damage that's going to take your ability to walk and see is being done right now
I really appreciate and recommend this for ALL new patients! I finally landed on a higher efficiency med when I was almost 50. I was diagnosed at thirty and am going to lve with the nearly 20 years of brain damage that might have been avoided.
It sucks. 😢
As someone who started ms BEFORE there were DMT’s, I 100% agree! Isn’t amazing that we GET to think about treatment this way!😊
Thankfully, My MS Neurologist who is head of the MS clinic where I live was totally on board with hitting my MS HARD.
Me too, I'm so thankful I was treated aggressively, I've been in remission for over a year, thank goodness!
@@mindyvanhorn3199 continued good health..
The problem is the insurance companies. They make you start with the lower drug before they approve the better drug.
Unfortunately I am living proof of what Dr. Aaron is saying. I was first diagnosed because of an optic neuritis, but MRI already showed spinal lesions. I was prescribed a low efficacy drug and fully recovered. One year later, another attack, worse than the first, left my right eye sight permanently impaired and a lot of permanent symptoms in my legs. Since then, I am on Ocrevus, and apparently had no progression.
Anyway, my life quality got significantly worse after the second attack, the constant symptoms are always reminding me of the disease.
So, if you are reading this, whenever you can choose which way to go on your treatment, please consider the most effective alternative.
God bless you. I’m praying for a cure like everyone on here…
DX almost 30 years ago, seven different DMTs, and just moved to a heavy hitter DMT. The escalation model needs to be kicked to the curb!
Same here...initially dx w RRMS 30 yrs ago. I'm still surviving but I'm not as sharp as I used to be... Avonex was all I had back then UGH!!!😊 Happy to still care for my dogs and walk daily but it's harder every day
WOW. I was on the escalating method. Went through 7 different meds. Now at age 61 in a wheelchair and dealing with all the damage to my brain 😢
I am so fortunate that my neuro recommended Tysabri from day one, 18 months after my first symptom. I know it made a huge difference in my journey with MS.
I wish all neurologists saw things the way you do. I remember where I was 20 years ago, a small amount of accumulated disability. When my MS was very active, I begged my doctor to talk about Tysabri. He did not want to. He recommended I stay on Copaxone, and start pulse steroids. Three bad relapses later, MUCH more permanent disability, he sent me to an MS doc at the Cleveland clinic. He recommended Cytoxan (it was a terrible experience). Fast forward two years, moved back to my home state, went back to my first awesome MS doctor from a few years earlier, she started me on Tysabri right away, and I stabilized. But it was too late. I had so much permanent disability that today I wonder where I'd be right now if I had had a better doctor when my MS was super active. It's so depressing to think about. My life is completely different.
So fantastic! Truly appreciate your message. I am living my best life in spite of MS. But if you had been my neurologist 30 years ago, it's very possible that I would have less permanent disability than what I do have. God bless you, Dr Boster. Please continue your messages. Luv, Deneen (pump girl in Ohio & Michigan)
Thank you so much for posting this video! I would also add: get an MS specialist, not just a regular neurologist to treat you. I was DX when I was 21 and the regular neurologist that I went to said “you’re young so we can do nothing and treat the relapses with steroids, or you can start a mild MS therapy” I understand he was acting on the studies available at the time, but 20 years later I see how wrong this path was and I had to become my own advocate for actively treating my MS. Anyone that was just DX: Bring a SWAT team to that knife fight! Your future self will thank you!
you are spot-freaking on, man
Been on 4 meds since I have had this disease. You are absolutely correct Doctor Boster, that’s the way the system works unfortunately! I wish you can clone yourself so we all can have you as our neurologist.
Hello everyone, during the pandemic I was fortunate to have Dr. Boster as my MS doc, I learned a lot. Prior to contacting Aron I had already started and finished Mavenclad, I was one of the first. That was 2019, I have yearly scans that show no new disease activity and with 0 known side effects. This probably sounds like a promo but it's not, I'm only talking about myself. As soon as the pandemic was declared over I could not associate with Aron anymore, unfortunately we have not communicated since and I don't travel anywhere, so I won't make it to the center. I truly wish I could go back to 2005 when I was diagnosed and able to seek a specialist and have that drug available. I would no doubt still be working and doing most of things I liked doing. Please take advantage of what this Dr. is saying, it might possibly help you retain your way of life. Again, this only me talking and hoping to help a fellow MS'r live a better life!! Happy Holidays everyone.
Can you find your closest MS center? I found Vanderbilt and feel very lucky. In a medical city like Memphis I can't believe that I was limited to a total of two neurologists and one practice were surrounded by 11 hospitals.
He doesn't even follow the McDonald criteria. Never assessed my vision, my cognitive ability or my ability to ambulate
We have mobile stroke units in Memphis FFS!
So I'm happy to travel 6 hrs round trip to see them
Can you find your closest MS center? I found Vanderbilt and feel very lucky. In a medical city like Memphis I can't believe that I was limited to a total of two neurologists and one practice were surrounded by 11 hospitals.
He doesn't even follow the McDonald criteria. Never assessed my vision, my cognitive ability or my ability to ambulate
We have mobile stroke units in Memphis FFS!
So I'm happy to travel 6 hrs round trip to see them
You are incredible, I have been given numerous other DMT's before being given the drug I asked for, I was denied the drug I asked for in the UK. That DMT is Lemtrada, I was pushed in various different directions. You are correct Dr. Boster.
omg! The contraception analogy is both hilarious and spot on!
Just when I think I can’t love our Dr B any more than I already do, he pulls something like this and I go “ok, I just loooooove him more” 😍😍😍
Insurance providers are part of the problem. I was first put on Copaxone, but after a MRI and follow up with MS specialist, he basically said throw it out and we will put you on Kesimpta. The issue was the insurance providers won't sign off until something with lower efficacy was tried...
Wisdom comes with positive experiences.
The injection fatigue is true. After 7 years injecting myself (and Rebif is not that bad, when used through the Rebismart machine), I was so over it. My body hurt even before I injected. And it was a unpleasant routine even after all those years. I switched to Ponvory as soon as they approved it here and I felt very relieved. A pill in the morning is absolutely not a problem and I feel much better.
I was on a low efficacy med before you became my neuro and I was so happy that you understood my dissatisfion with it and championed for me to go on a better DMT! Thank you for listening and being supportive of all your patients and community!
“Awesome sauce”
Did you coin that?
It’s brilliant!!! 🙌
I started my new year out with you Dr Boster and my word all year was success...it's been a good year and I am glad to see you here as it comes to a close..I'm undiagnosed MS...and I'm figuring out my own path through this thing.
Thumbnail was funny. Love your sense of humor. Great video (as usual). My first neurologist was the escalation type. Terrible bedside manner as well. Switched to my neurologist I have now and he is along the same lines of your thinking. And he’s been great! It really is all about the physician. We have to have a great relationship and trust our neurologist.
I'm in SA and I'm allowed to see a trainee neurologist twice a year, does nothing for me 😔 and it's a different young, knows nothing person everytime 😔
Great video! I started Tysabri after maybe a year or so on Copaxone and then Rebif until Tysabri beacame available.
I REALLY pushed for Tysabri and I honestly have almost no MS symptoms anymore after taking Tysabri for many years. I am 59 now and I am so much better than I was at 35 in regards to MS symptoms.
I DID switch to Ocrevus because of the JC virus. I had a lot of issues with the pre-med steroids etc.
I have not taken anything in the past 3 years. My choice.
I do understand a MRI only is a tool and not to read too much into the fact my MRI's have been good. No changes.
One Neurologist has the opinion I may be able to stay off treatment completely because of my age and how I have done after years on the 'big guns'. I do honestly feel better off everything BUT I do understand the dangers.
I am going to see my former Neurologist who is back after 3-4 years at another hospital across the country.
If I go back to something it would be Kisempta.
Thank you for informing me so I can make better decisions. :)
Escalating method patient here - was offered Aubagio and afterwards Tecfidera, both pretty low efficacy. Had a ton of spots on my MRI already like 5 years ago before starting any meds so yeah...
On Kesimpta now though! 💪💪💪💪💪💪
My greatest fear is PML it terrifies me. So much it prevents me from trying new meds. I saw what it did to a fellow MS patient and it was horrible 3 months after getting PML she died a horrible death. Dr.Boster how do I get passed this yes i understand its like 1 to 2% chance but its not a chance I'm willing to risk. PML is worse than MS most people i found don't live but 3 to 4 months after being diagnosed with PML. Why can't they come up with just 1 DMT that doesn't have the PML. Please help me understand why can't thet make a DMT that does not pose this risk Please. 😢
The risk is very low. For me, being on Vumerity, I got blood work done every 3 months to make sure there was no risk for PML. After one year, it's every 6 months. If they see a certain risk in your lab work. you need to stop the meds before it can get worse. I've had med anxiety after my diagnose, so I know what you fear. Find a good clinic or neuro and ask them how they manage such a risk. They will explain how they monitor your health and it will give you more confidence going forward.
Thanks for another awesome video Dr. Boster!There isn’t a video of yours I haven’t already watched ❤. Happy holidays to you and to your loved ones
🕎✨🎄
Great explanation. Greetings from Poland 😊
Thank you for explaining. I can't handle the IV a lot so Tissue was not for me. I take generic Receivers since my insurance will not pay for the brand name, but no relapses in 10 years. My disability is getting more all the time. Not sure what to do but keep hanging in there and trying to move about more.
Thank you Dr Boster, excellent thought provoking video. 🔥🔥❤️🔥🔥🔥
More effective does not necessarily mean worse side effects. I started with Interferons and had always very unpleasant flue like symptoms. With ocrevus I didn't have any side effects.
Same here, started out on injections, then Tecfidera, then lastly Ocrevus which I’m very happy with now after 20 years of my life being taken away from me
Thank you for sharing and great information
I started off with Tecfidera But, had to come off of it & now on Tysabri. Doing well as one with MS can be doing. Only issue, dealing with traffic to get to & from.
MS ruined my life and I’m only 36. Pretty not cool!
Same, 32 😔 sick since 23
my son is 27 and he hardly can walk or use his hands coz of tremor. they put him Aubagio now, coz insurance didn't approve Macvlan. i dont know what to do to help him.. it sucks how insurance works here sometimes. he used Kesimpta but no luck.. now Aubagio. i pray every day for a miracle and for you guys. 🙌🙌🙌🙌
I'm going to be 38 soon i was diagnosed in 2021 symptoms for 5 years before, in short i was blurred and double vision, foot drag, vertigo, choking, heart palpitations and way more. STOP eating sugar and carbohydrates and your life will change. Its the constant inflammation from this food that's making it worse and killing us. i feel like a teen again and have the energy of one with RARE minor symptoms no meds. There's a whole different world outside of this one.
Meds help, stop eating sugar and carbohydrates and processed carbohydrates, please.@@angeliquetamsinpotgieter1165
please understand food plays a major role in inflammation and sugar with carbohydrates especially added sugar and processed carbohydrates make it worse, I stopped eating these and every month I got better and better. Please.
I had a massive ms attack and was hospitalized for a week and given steroids. I never recovered fully and still have to use a cane. Several months later I had another attack that took my eyesight because I was never given the option of a dmt by my neurologist? My eyesight has never fully returned either but at least I do not have double vision anymore. I had symptoms for years prior but fought through it until I no longer could. I was first diagnosed at age 44.
I am only 46 years old. I was just diagnosed with PP MS in April 2024, after a severe roll over car accident I was told I shouldn't had survived. I finally found a competent Neurologist. I supposedly have had MS since about 14 years old. The brain damage that has been done, means I have a brain of a 70 year old. I finally started a high rolling DMT drug, that yes, I have to inject myself with. However, it is helping. Now that I think back to my teenage years, it makes sense. I was a great gymnast, until I started having balance issues, and more. It's a shame that nobody paid attention when I was seeing 7 different doctors for all of my issues. Had they all talked, or thought outside that box, I wouldn't be as bad off as I am. but it is what it is. I can't change the past now can I? But I can kick a$$ back, in the present. :) My husband and I, really appreciate your videos. So does my oldest son, who also, unfortunately, has MS as well. His was thankfully caught early. Before my MS was even found.
Thank you so much for this!
Glad it was helpful!
I wish this had been clearer back in 2001 when I had my first MS attack! I saw Dr. Randy Schapiro at the time, who was amazing. At the time he leaned toward "probable MS" (based on a technicality, sort of) and said 15% of people never had another MS attack so he wanted to hold off on meds in case I turned out to be one of those people. I didn't have another clear attack until 2007 (at which point he started me on Copaxone), but after an attack in 2021 I suddenly developed a lot more problems and I wonder if the early damage set me up for my current struggles, even though my disease course seemed relatively mild for many years.
Excellent advice. Thanks Dr B. I don’t understand why the OG drugs from the 90s are still being used by older patients. It seems neurologists are hesitant to change from these old drugs if the patient is doing well which I understand but if they’re only slightly better than placebo why bother? My mother in law was on rebif for over 15 years before getting injection fatigue and her neuro switched her to Tecfidera. I was diagnosed 3 years ago and started on Tysabri, but became JCV positive after 5 months and switched to Ocrevus. Thankfully, I have little disability and that’s exactly why I opted for the most efficacious treatment as recommended by my neurologist.
Thank you! 👍🏿😃❤️
You are so welcome
So grateful for these amazing videos and information ❤
Hi Dr. Aaron Boster (😂 wanted to show you i know how to write your name). First, i'm a fan of you (my neurologist would never go as far as you do to explain anything to me, so i learn 200% more with you than with my neuro, do they even know what is MS?🤔). Second, i know what you think about escalating... but im so scared to go up... im on Aubagio since a year, was diagnosed in feb 2023 but should have been in 2017 (doctor's error..), could you kinda rate the different meds on a efficacy scale on your next live stream please? I dont want to go on ocrevus, i loose conciousness when i have a simple vaccine 😂. Thx Dr. Boster, have a nice day!
I got put on the least effective treatment (and have to inject myself weekly) - I want to shove this video in the previous neurologists face for using the escalation method 😭😭
The only drug I've been on for the last couple of years, is Fampyra. It's helped very slightly, but not what I was hoping. The side effects of the other DMT's are worse than what my MS effects are, so I'm not really sure if I'd want other DMT's.
but esclation comes with dangerous side effects??? 😢
I’m curious what are the side effects?
Dr. Boster will there ever be a drug which will control relapses 😮
I am currently fighting this fight with insurance companies in Canada. They have said I am not eligible for Ocervus even though I am progressing while on Tecfidera because I am not having relapses. According to the companies, I am only eligible if I have had 2 relapses in the last year. I am experiencing PIRA in a major way, but they will not cover my medication change. My neurologist is in my corner but insurance is not.
Thank you.
You're welcome!
Great video. Is Vumerity high efficacy in your opinion?
So for the past 4days I've been feeling ill. I went to the A and E. My bloods came back fine. Today I've had this rope type feeling around around the middle of my chest. It went away after about 10mins. It was tight and left me gasping for air. Typed in my symptoms and came up with ms 😢 I'm hoping it's wrong.
Sad but true but in my experience you have to add a phrase including, “and can afford”.
Thank you
Doctor, thank you for your dedication. I have a dude. Why the most clinical trials are designed sgainst low efficacy DMT such as Aubagio.I am on BTKi clinical trial , remibrutinib versus Aubagio. And obviusly i am not sure if this the best approach for managingw th MS 😅
Thank you always, so appreciate you 🌟🙏✨
You are so welcome
In the Netherlands they still use escalation method. I tried to have ocrevus at the start but my Dr. told me about someone who "died" from it. Horrific bed side manner. Currently on Vumerity as I assumed he knew what he was talking about as a Neurologist (talked to 2 actually who said the same). Now I am about 2.5 years in and from my last scan there were no changes luckily ( about 4-5 months ago, once yearly scan). I also think this is playing with fire though as you say, if something happens it is too little too late. Why risk rolling the dice when you can smash it with a sledgehammer and know with certainty that you are doing everything within your power to keep things under control. As soon as I see any changes on my MRI I want to use it to escalate to Ocrevus. Is this the best medication in your opinion?
Hi there, also from the Netherlands and I immediately got the highly effective DMT. So I think it differs per person and per MS centre in the NL….
I’m on a high efficacy DMT and happy with the results. Side effects aren’t horrible, but are present. That said, I have good insurance and help from the maker of the drug I use to pay for infusions. Is there any reason to believe that some of the decisions about which drug to try first are based on cost and/or insurance coverage? Good info from video, btw.
All I know is I I took one year of mavenclad will not be doing year two. Felt like poison.☠️
I'm on Aubagio and was diagnosed last year after hospitalization. My eye wasn't moving, so I lost vision and couldn't walk on my own. I'm recovered fully I'd say minus the constant neck and shoulder pain I developed in the hospital. I had 4 lesions at the time. It's been over a year and I'm barely having my next set of baseline MRIs, the first one of my spinal cord because for whatever reason they neglected to do it with my brain MRI. I'm at a loss. I'm so unsure what to do next.
I think if my previous doc put me on a more effective med I wouldn’t be in a wheelchair. Since I’ve changed to UAB I’m getting the best treatment possible, should have changed yrs ago!!
I have struggled for 50 years. For the first 25 years the doctors wanted to see repeated flares before they would treat it . Not good .
What do you think about the new PIPE medications for myelin repair now under trials?
Dr.Boster; is there anything stronger than Kesimpta out there that would help me better in the long run ?
Hi, Dr. Boster. I am on Teriflunomide (aubagio) and Baclofen. when i was on augagio i had no issues, but since i was switched to teriflunomide (small white pill) i am having tingling and itching in my left hand. when I was on the blue version of the pill i had absolutely NO issues. is this even a side effect?
I have recently been diagnosed with almost nothing symptoms. 3 tiny lesions on MRI. Ia Kesimpta the right choice ? I am 20 years old, male
This is exactly what my insurance wants, currently on kesimpta, but its been denied, until I try other dmt's. Dr. Are you able to tell how long someone, has had MS, by looking at an MRI.
What's the best treatment if you have hepatitis b also?
Is Tysabri a "high efficacy" drug?
yes
@ thank you. My son is symptom free (except mild fatigue) and MRI this month shows no progression or new lesions x 4 years. He’s 26. Thank you for all your videos. YOU MAKE A DIFFERENCE TO SO MANY!
مرحبا دكتور بوستر لقد شاهدت بعض فيدوهاتك عن مرض التصلب المتعدد واريد ان اخذ رائيك انا اعاني من صعوبه في المشي اعرج قليلا وقد اجريت الرنين المغناطيسي وضهرت لدي بعض النقاط البيضاء علا الدماغ ولكن دكاتره الاعصاب قالو انه ليس تصلب ولكن اجريت البزل القطني للتاكد ولكن بعد البزل القطني ساء المشي عندي اكثر لدي ميلان عند المشي واهتزاز في جسمي عند المشي انا قلقله جدآ هل البزل القطني يؤثر علا المشي ارجو الرد
لا ينبغي أن يؤثر البزل القطني على المشي. قد يكون من المفيد أن يتم تقييمك من قبل معالج فيزيائي (بالإضافة إلى طبيب الأعصاب بالطبع) للمساعدة في تحسين آليات المشي لديك. حظا سعيدا.
I have MS. And a doctor with the worst bedside manner. I asked for a different doctor once and got an amazing one that left the area and was given back to him. My quality of life is horrible I'm about to lose my job, I can't focus. I'm having huge issues with executive function. And no matter how much I asked for help because 10 years ago I struggled with opioid addiction he won't do anything except for tysabri. Which is great I don't mind taking the medication even though I have a JC virus level. But I also need some of these symptoms that I'm going to have the rest of my life managed also not just the disease. What do I do?
How can I get information about the legs not working properly? And now an issue of inability to remember 4 minutes later?
Just curious, but did you get another fur baby? I remember months ago you said yours passed away😢
How do you feel about Kesimpta ?
Is one of the best you can get!!!
❤
❤
@@AaronBosterMD
Good morning Aaron,
I Hope you dont mind me messaging you on YT. Would it be posible to have a paid consultation or Advice please? I have RRMS & have had it for 30 +years. I am 53 yrs & I have been lucky enough to be able to enjoy my work & generally had good health in between the up & downs of MS which was thankfully relatively Mild.
My life changed massively after having 4 shots of C vaccine & having covid a month after which was mild & didnt seem to effect me much. The constant Daily health issues started from there, Daily constant headaches,nausea,extreme fatigue (none Being the Same at all as of my previous 30 year experience) ive now been of work for a year & a half.
I moved to Spain 7 years ago & pretty much had good health útil covid. I left the uk unsucsessful with two seperate DMD’s that i couldnt tolérate, so i was happy to allow my body to go into a natural state before trying some thing new. Ive only just got a neurologist appointment becarse i thoughtbit was relaspe, now im sure it’s not.
I finally have a MRI next week & then wait to see a new young neurologist which wants to Start me on new drug.
I dont think i am in relaspe rather than a post viral syndrome type thing as after covid i was constant ley sick, throat infection lasted 3 months, 3 flues in 3 months,Water infections, stomach bug… one after another. My body is still the same but i do feel my Spirit & energy has lifted a little. I am super healthy re foods, dont drink or smoke.
I have always been into fitness & working hard in between my MS blips, no i have Become some one else after 30years. Now Any physical exercise (fine that day) the next i feel like i have run a 50K marathon, fatigue is a understatement. Daily headaches, nausea & this fatigue.
I would love it if you could give me some advice please, it’s been a loooong frustrating road & im hoping for some positive information. Thank you very much for taking the time to reading this, im sure you are extrémly busy.
Apologíes for my grammer, my iPad has recently had a im going to try & convert Everything into spanish¡ obviously clicked on something…
Kind regards
Laura Seaman
Is this escalation model dictated by researchers/scientist/doctors or is this recommended by insurance companies? My experience is with insurance denying everything even though it's doctor recommended. It feels like to me that the federal government is dictating my treatment. Insurance companies are doing what the government tells them is acceptable. Insurance fraud is real and I have worked with enough private practices and hospitals to know any respectable facility or doctor won't risk fraud. Just curious....
Great birth control analogy.
Thanks!
@@AaronBosterMD I believe you've used the birth control analogy in the past, I thought it was perfect, so I've used it to explain to family/people how the Ocrevus I take works. They were under the assumption that Ocrevus would repair the damage my PPMS has done. I explained to them that the "children" PPMS has given me aren't going away, but hopefully I won't get anymore "children" in the future.
Let's bring the J.I. JOE on!