Sounds like I was lucky. The doctor who saw me in the ICU when I ended up there, and while he was caring for me in the hospital said "I'm not accepting new patients, you're my patient, call this number when you're out for an appointment." was amazing. I was immediately put on Tysabri, but was still advancing fast, so he referred me to an MS Specialist, who found out I developed immunity to it almost immediately. He put me right on Ocrevus, where I've been for the past few years, and I'm not showing any signs of advancement.
My neurologist wants me (the patient) to decide the medication. He has never given me his opinion on treatment, only that he suggest to be on one. When I left his office beginning of January I had a bag of pamphlets and information on many medications and told to go home and decide what I want to do. This is after tecfidera did not work. Your channel has given me more knowledge of this disease than both neurologist in the over 2 years since I was diagnosed. A 15-20 min appointment is just not enough time.I chose Ocruvus and am waiting on insurance and my pcp to submit pre authorization to start. It’s been weeks now so hopefully this week will give me good news!! Thank you for taking the time to make your videos!
Thank you as always Dr. Boster! I went BIG early! Mavenclad was my first DMT and 2.5 years later-no relapses or new lesions. At 62 y/o I think it is unlikely that I will progress massively, but I’m glad I went high efficacy anyway. And the good news is I had no bad reactions to the medicine.
I was just diagnosed with RRMS last month after landing in the Cleveland Clinic ER with sudden onset numbness from my tailbone to my toes. Apparently, I’ve had it for a few (or several) years. I didn’t even know I had MS! 😱 My new neurologist told me to choose either Ocrevus or Kesimpta. I chose Kesimpta. So glad he went for the big guns right away! I know MS is progressive and any nerve damage is permanent. So I want to hit it hard and fast to prevent further damage and progression.
You make extremely good logical sense.I refused some therapies that could of really helped me in the past but I won't in the future moving forward. One could have also helped with the myeloma I have as well. I refused all treatment for multiple myeloma during 2019. I was trying my best to live longer to be there for my family so I have been extremely cautious about what I put into my body. I gave up smoking.I don't drink alcohol except for special occasions and then I am cautious about that since my first and very aggressive onset of multiple Sclerosis followed by smouldering multiple myeloma during the years 2018 and 2019. Sorry to bore you with my dribble. Have a great weekend and keep up the great work. Many people seek what you recommend as guidance and for great reasons.
My Dr used fast escalation. I was diagnosed in ‘21 at 59 years old. I’ve likely had MS since ‘95. She put me on Aubagio as a safe option in a pandemic and likely the easiest to get insurance to approve. We moved to Tysabri in ‘22 when new lesions were seen.
My treatment was the escalation model - copaxone, tecfidera, tysabri, lemtrada, then Ocrevus. None of them kept relapses at bay so I did HSCT a year ago and not on any DMT'S for the foreseeable.
I was just diagnosed last week after a long road of symptoms and Dr's not taking me seriously. My neurologist is trying to go with the same model and told me we'll try copaxone first and monitor every few months.
Dear Dr. Boster, thanks for your video. Here, in Hungary if you had just one flare up, your insurance doesn't cover the MS medicine. I was lucky enough to take part in a Gemini 2 study to get either Aubagio or BTK inhibitor. I am happy that I didn't have to wait until my second flare up. In each country it is different when they do some actions with MS patients.
In my case, my MS was so active and advanced and agressive that from the start I was presented with Ovrevus or Tysabri. Tysabri was automatically given to me because of it's fast action.
Love all you videos. As a veteran with MS the VA neurologist are very brief and often times will prescribe whatever is the cheapest med available. I had to go outside to get infusions (Ocrevus at first and now Lemtrada). My question or request of you is can you do a video on smoldering lesions and what impact they have over what we typically see with an MRI? Thanks Aaron from an Army Vet in Texas
I wish my neuros would have done this with me. I started on Rebif and it was horrible. I lived in the clinic all summer, lots of steroids and kept getting worse. I underwent Plasmapharesis in which I coded, it was worth it settled me for a bit while drs worked on getting me ready for next med. I now have been on Tysabri for over 8 years, I have 97 infusions so far.
Your videos are so great! Thank you for sharing the plethora of knowledge that you do on this channel and in your profession. Do you post when you will go live beforehand? I have some questions I'd love to ask you, and I actually trust to ask you. My journey with MS, and treatment implementation has been quite a wild ride!
Great video- thank you for explaining the difference in how a doctor treats us. Personally I have the best Neuro. He’s got a great style & treats my MS & me. You got me back out of bed/ TN eased thank god. 🙏🏻 switching my DMD was imperative- ty so much for doing what you do. #Sharingiscaring. #DrAaronBosterRocks
Thankyou Aaron. You are entirely helpfull. Very little can be conveyed in a 15 minute phone consultation waited on for for 6 months. I keep a daily journal so as to be scrupulous in not missing details.
Failing medicine is also something that insurance companies insist on too (at leas here in Canada- my understanding is that it's the same in the US). The more efficacious drugs are more expensive and insurance doesn't want to pay. My neurologist had to 'prove' that I needed better meds. I'm not sure how much her hands were tied, or if she just accepted this and didn't push hard enough. She's retiring in 6 months, but if she weren't, I'd probably start looking for a new neuro (and yes, in Canada we can choose our doctors if we live in an area with choices). My biggest complaint about her is that she makes a lot of decisions for me and not with me (but that's a whole other issue).
Thank you for this amazing series! My doctor is a fast escalator, but I will be on induction soon (Mavenclad). At some point, if you consider this useful, or other patients want this as well, could you please make a video comparing Mavenclad and Lemtrada? To me, they seem the same, only one is a pill, the other an infusion.
Thank you Dr Boster awesome video. I am a 💯 for the early application of highly effective therapies or an induction approach. In NZ the neuro was definitely escalation approach so thank goodness for you, you empowered me to ask to be put on a highly effective therapy 😁🔥🔥🔥🔥🔥
Can you please do a video on Functional Medicine? I see this brought up in so many MS groups. It seems like quackery to me but I'd like to hear your take.
Unfortunately I’ve been in the MS community long enough that the only thing early on were the CRAB drugs. My 1st year I went through 3 neurologists for a variety of reasons but the 4th was a study doctor and she was very much into using whatever appeared to be the most effective. I was with her for 10 years before switching to my current doctor (also a study practice) and have cycled up to Lemtrada. After 5 years on Lemtrada there’s been breakthrough activity and I’m really not sure how to go now.
Rebif -> Tecfidera -> Ocrevus (over a 12 year period). Name that approach? I am with you Dr B. It's our bodies. Currently, there is no turning back! Thanks for all you do!
Thank you, Dr. Boster for another great snippet of she advise regarding treatment. I was on Vumerity/Tecfidera for two years before being upgraded to Ocrevus this year. I hope, now, that my MRIs show no progression since I'm showing no side effects from the treatment.
What if ‘induction’ is not true reconstitution but actually equivalent to long-term immunosuppression? Because we see that certain cell types take years to come back..
I was diagnosed with CIS, just one spot on brain MRI. Spine was normal. Doc says no treatment because not enough evidence to support treating. Any thoughts?
I started with Lemtrada as 1st tier instead of the stair stepping approach that only insurance companies want! 😢 I was fortunate that my neurologist was persistent and able to get the Lemtrada for me as 1st tier... my first and only treatment ever. When Insurance tries to be more of your guide than your Dr. its a problem. Do whats right for the patience's. I paid my insurance premium for 30 years and never used it... I should of used a tier system for my premiums. What if the Dr. decided your insurance premiums... Doesn't work for insurance and it doesn't work work for the Dr. either. Let the Dr. be the Dr. end of story. Start with the best first!!!
It’s not always the doctors, it’s the insurance companies. I have great company insurance and they will not approve Kesimpta but they will for Aubagio and Copaxone. Edit- I was finally approved. Keep at it. Be your own advocate!
I don't know if I have MS just yet, but have had 3 brain injuries - one each at age 5, 19 and 51. I have had since my 20s problems with my hands not wanting to follow instructions and be very weak. I have very quick muscle wasting when I don't constantly move, and chronic stiffness when not in motion. After this last injury, I occasionally need to wear double hearing protection because of high sensitivity to loud noises, weakness in my knees that happened at only one spot of bending can now send me to the ground, leg cramps started about a year ago and back spasms started in October, bouts of panic and racing thoughts have increased greatly and sleep is very poor. While waiting for a proper Dr. appointment, I am starting a Paleo diet to see if it helps. Whether this is MS or just my brain injuries, this diet seems to address repairing Neuro pathways, cleansing inflammation and general healing. Thank you for your work, let's see if I can get this old body working better again.
As always, Dr., you’re amazing your style and your information that you provide us is priceless. How do you break things down every day so we can understand this complex disease
I'm considering switching to Mavenclad but, as it reduces lymphocytes, I am worried about recent reports of severe fungal infections post covid caused by lymphopenia. In this Covid era, is Mavenclad a sensible choice?
I’m 77 and off MS meds for many years. MS for over 30 years. My doctor’s style wasn’t mentioned. Since my MS isn’t active, she believes nothing will help.
Massive thanks for all that you do; I've learned so much from your videos. I have a question: I'm about to start Mavenclad (my first DMT) in a little over a week. I know about the rebooting of my immune system, but when I asked my neurologist in Berlin if there was anything that I could do to assist or encourage that reboot (i.e. with supplements or a focus on nutrition), he recommended against doing anything of the sort, and said that it's important to allow my immune system to regenerate at its own pace, naturally and without any specific external assistance. Really curious to hear your thoughts. And thanks again.
I was recently diagnosed with MS. Dr hit it hard right out of the gate. Rituximab infusion session 1 completed. Sessions 2 and 3 to be scheduled shortly. I appreciate your perspective and communications. My Dr doesn't seem to talk much. Just in .. .. Hi, how's it going? and out. Always in a rush and not much conversation on MS info or advice (unless I ask a specific question). Thanks Again.
Hello, I am 55 and have had M.S. since I was 21 years old. I had 3 attacks and when I had the last attack at 30 years old, which is when I was put on medicine. I have been taking Copaxone for about 20 years. I would love to switch to a pill, but am unsure what to do.
Question for you, I was on tysabri and did very good, my job required 3 days at work and I caught a cold, and my dr changed me to ocrevus I have been on it 3 months and I feel horrible what should I do?
Thanks Dr. for your knowledge and pushing it out to all who listen! I wish I would have known this information from the get go (but that’s a novel and common thought I’m sure). However, being a person of 55 (diagnosed at 42) and started on a low efficacy DMT (Copaxone-Generics the entire time).Is changing now at 55+ to a higher efficacy DMT that covers both RRMS and SPMS a bad thought? I would like to switch to something that would address the needle fatigue as well. I have been researching various possibilities and likeliness of insurance acceptance since that truly is a hurdle in itself. I would love to know your thoughts. I have not been diagnosed with SPMS, but I personally feel I am headed in the direction of SPMS. I have not had any MRI’s that show any worsening but sure do feel it in the way symptom progression!! I do not want to wait until things worsen beyond being able to come back from worsened or addition symptoms. I cannot afford to not work to maintain basic life and quality of life (Quality of life right now is living to work and resting so I can work.).
Thank you for this video. My question is if you do well with a low efficacy DMT such as Avonex at the beginning of your treatment, should you stop taking the DMT? If your relapses are few and no new lesions in a two year period, is that evidence that you no longer need a DMT? Also, what are examples of neurological progression of MS? Thanks again for all the information you post. 🧡
Hi Aaron, could you possibly give a small clarification on how to understand different styles of MS treatment? Would Fingolimod as the first DMT be an example of the escalation style? And if not, then what other style would that be?
I have watched your videos for a while now. As a 61 yr old female, am I to understand, I'm at the end of the road for diagnosis and/or treatment? I've had several symptoms that have been ignored and brushed aside, by Dr. and myself, as aging. At this point in my life, is it even worth seeing a neurologist, or am I too old to even hope for relief?
Don't give up hope! If your Dr isn't taking you seriously or you feel uneasy with them, find a new one or at least get a second opinion. I know it's a lot to deal with but hang in there!
I would love to follow the high efficacy model but the netherlands doesn't follow this sadly. Please feel free to bash holland / the netherlands and use it as an example of poor treatment practice. I said to my neurologist I wanted Ocrevus. He proceeded to tell me someone died on it and advised me not to take it / take vumerity. Now I have to wait till i get worse to get better medicine. Horrible and ethically messed up situation that we are not allowed to have access to the best treatment (until we progress *) . It's very backwards - I could have been taking the treatment that would have prevented the relapse from ever occurring in the first place...
Good morning Dr. Boster! Thanks as always for your thoughts! I am most comfortable with the escalation model myself, but completely understand that thoughts of starting with a higher efficacy drug. Do you have any experience within your practice of patients doing a combination of diet and lifestyle changes (5 for 5) on lower efficacy drugs? I would love to hear your experience with this? So far I am doing well on a lower efficacy drug along with diet and lifestyle changes.
Dear Aaron, I am an RRMS patient. High-efficacy medications lack long-term safety records. Tysabri and PML connection is a significant example. Do we have any high-efficacy medication with 15 years of safety records? Some of us are diagnosed in our early 30s or even 20s. If we can use a high-efficacy drug for only 7-10 years, isn't it a waste of opportunity for our future? Can we really trust high-efficacy medications for now? Tysabri, Ocrevus, Mavenclad and others? In my opinion, for long-term results, we don't have the luxury of wasting the low efficacy medications. Thanks for the video
Thank you for your very informative and life saving lectures. What would be your take on treatment option for newly diagnosed MS in young 33 yo women with initial symptoms of right eye vision changes including blurriness and double vision. MRI showed 4 small lesions under 1 cm with one of them enhanced right next to right CN 6. MRI C-spine with indeterminate ?demyelinating spot which didn't collaborated with other slides and MRI T-spine was clean. Blood work come back with HCV high index otherwise normal. Initial plan was to start with Ocrevus but after founding HCV high index positive recommended to start with Kesimpta. It's been now about 1 month from hospital discharge. Was treated with hight steroid dose x 3 days in the hospital and discharged on tapper dose. Vision completely back to base line. Ended up to seek for second opinion and feel now that treatment is delayed. Read somewhere that approach to MS especially to first flare should be as aggressive as treatment for the stroke? Recommended to go with Kesimpta trial in order to avoid insurance restrictrictions. Please advise. Thank you.
I have all my bloodwork for Vumerity tomorrow for RRMS. I’m really scared. I’m the chick who has a dilated central canal/syrinx too. I was only offered the one. I have been dodging this for 3 months. I am a mild case (I think). I’m getting dumber though. It’s bad.
I'm just really tired of being in a wheelchair. I was diagnosed with MS IN 1995 after I feet off of a loft bed in my sleep and hit my temple on the night stand at the bottom of the bed.
@@AaronBosterMD always thinking of us - even while on vacation- you are loved by everyone in all states,countries and beyond! You truly have my respect for your dedication not just to your clients but to us all dealing with this disease- I have been following your channel and ,respected your knowledge way before you opened your own clinic- I wish you where here in Ontario Canada 😂 I have learned so much from you- thank you 🙏🏻- Nancy
Hi from Israel I enjoy hearing your advices I have learned a lot my daughter was diagnosed on July this year and all my time I spend on looking to help her l am a nurse so it is easy for me to understsnd alot she is on tysabri for 5 month after every treatment she felt horrible the last treatment her Dr suggested to put 600 ml liquid after the tysabri instead 100 ml she felt wonderful may be it will help for otherness thanks again and bless you
Hidie Ho Doc!!! Okie from Muskogee here. I'm on Rebif, dx in 04/22, but I think that I've had this since about 1980. I'm trying to get into the HOPE bio stem cell research. I can't just allow this illness to take over. Honestly, I wish that it involved chemo because killing off a nasty nazi genocidal immune system and replacing it with new little happy puppy type stem cells seems right.
Thank you for your very informative and life saving lectures. What would be your take on treatment option for newly diagnosed MS in young 33 yo women with initial symptoms of right eye vision changes including blurriness and double vision. MRI showed 4 small lesions under 1 cm with one of them enhanced right next to right CN 6. MRI C-spine with indeterminate ?demyelinating spot which didn't collaborated with other slides and MRI T-spine was clean. Blood work come back with HCV high index otherwise normal. Initial plan was to start with Ocrevus but after founding HCV high index recommended to start with Kesimpta. It's been now about 1 month from hospital discharge. Was treated with hight steroid dose x 3 days in the hospital and discharged on tapper dose. Vision completely back to base line. Ended up to seek for second opinion and feel now that treatment is delayed. Read somewhere that approach to MS especially to first flare should urgent just as for stroke.? Recommended to go with Kesimpta trial in order to avoid insurance restrictrictions. Please advise. Thank you.
Thank you for the video on treatment styles. As always a wonderful start to the day and week. Doug coffee in hand from Lyndhurst Ohio.
Thank you Doug! #StrongerTogether #WeHaveMS BosterMS.com
@@AaronBosterMD how do you feel about chemo and hematopoietic stem cells therapy? It feels similar to the idea of induction therapy you mentioned.
Sounds like I was lucky. The doctor who saw me in the ICU when I ended up there, and while he was caring for me in the hospital said "I'm not accepting new patients, you're my patient, call this number when you're out for an appointment." was amazing. I was immediately put on Tysabri, but was still advancing fast, so he referred me to an MS Specialist, who found out I developed immunity to it almost immediately. He put me right on Ocrevus, where I've been for the past few years, and I'm not showing any signs of advancement.
What were your symptoms when you were hospitalized? How many lesions on MRI?
My neurologist wants me (the patient) to decide the medication. He has never given me his opinion on treatment, only that he suggest to be on one. When I left his office beginning of January I had a bag of pamphlets and information on many medications and told to go home and decide what I want to do. This is after tecfidera did not work. Your channel has given me more knowledge of this disease than both neurologist in the over 2 years since I was diagnosed. A 15-20 min appointment is just not enough time.I chose Ocruvus and am waiting on insurance and my pcp to submit pre authorization to start. It’s been weeks now so hopefully this week will give me good news!! Thank you for taking the time to make your videos!
My MS neurologist is a snappy dresser!!!! Because I see you!!!
Insurance companies practice medicine without a license. They make you fail other drugs before approving the newer, high efficacy drugs.
Thank you as always Dr. Boster! I went BIG early! Mavenclad was my first DMT and 2.5 years later-no relapses or new lesions. At 62 y/o I think it is unlikely that I will progress massively, but I’m glad I went high efficacy anyway. And the good news is I had no bad reactions to the medicine.
I was just diagnosed with RRMS last month after landing in the Cleveland Clinic ER with sudden onset numbness from my tailbone to my toes. Apparently, I’ve had it for a few (or several) years. I didn’t even know I had MS! 😱
My new neurologist told me to choose either Ocrevus or Kesimpta. I chose Kesimpta. So glad he went for the big guns right away! I know MS is progressive and any nerve damage is permanent. So I want to hit it hard and fast to prevent further damage and progression.
You make extremely good logical sense.I refused some therapies that could of really helped me in the past but I won't in the future moving forward. One could have also helped with the myeloma I have as well. I refused all treatment for multiple myeloma during 2019. I was trying my best to live longer to be there for my family so I have been extremely cautious about what I put into my body. I gave up smoking.I don't drink alcohol except for special occasions and then I am cautious about that since my first and very aggressive onset of multiple Sclerosis followed by smouldering multiple myeloma during the years 2018 and 2019. Sorry to bore you with my dribble. Have a great weekend and keep up the great work. Many people seek what you recommend as guidance and for great reasons.
My Dr used fast escalation. I was diagnosed in ‘21 at 59 years old. I’ve likely had MS since ‘95. She put me on Aubagio as a safe option in a pandemic and likely the easiest to get insurance to approve. We moved to Tysabri in ‘22 when new lesions were seen.
My treatment was the escalation model - copaxone, tecfidera, tysabri, lemtrada, then Ocrevus. None of them kept relapses at bay so I did HSCT a year ago and not on any DMT'S for the foreseeable.
I was just diagnosed last week after a long road of symptoms and Dr's not taking me seriously. My neurologist is trying to go with the same model and told me we'll try copaxone first and monitor every few months.
Dear Dr. Boster, thanks for your video. Here, in Hungary if you had just one flare up, your insurance doesn't cover the MS medicine. I was lucky enough to take part in a Gemini 2 study to get either Aubagio or BTK inhibitor. I am happy that I didn't have to wait until my second flare up. In each country it is different when they do some actions with MS patients.
Doc, you're the snappiest dressing neurologist I know!
In my case, my MS was so active and advanced and agressive that from the start I was presented with Ovrevus or Tysabri. Tysabri was automatically given to me because of it's fast action.
Absolutely excellent AAron. So clear, in easy to understand language, and to the point. I really enjoy your talks. Thank you so much
You are welcome Maria!
Love your style and straight forward explanation of it all. Thank you for helping me through my ms journey ❤️
Extremely helpful. In the middle of trying to decide the next medicine
Thank you so much for doing these videos. They are very helpful.
Love all you videos. As a veteran with MS the VA neurologist are very brief and often times will prescribe whatever is the cheapest med available. I had to go outside to get infusions (Ocrevus at first and now Lemtrada). My question or request of you is can you do a video on smoldering lesions and what impact they have over what we typically see with an MRI? Thanks Aaron from an Army Vet in Texas
So thankful for you and your presentations.
Hoody hoo! Good morning Dr.B - Nancy here from Canada 🇨🇦 always love the Monday morning vids 👍🇨🇦🔥
Thank you Nancy!
I wish my neuros would have done this with me. I started on Rebif and it was horrible. I lived in the clinic all summer, lots of steroids and kept getting worse. I underwent Plasmapharesis in which I coded, it was worth it settled me for a bit while drs worked on getting me ready for next med. I now have been on Tysabri for over 8 years, I have 97 infusions so far.
Your videos are so great! Thank you for sharing the plethora of knowledge that you do on this channel and in your profession. Do you post when you will go live beforehand? I have some questions I'd love to ask you, and I actually trust to ask you. My journey with MS, and treatment implementation has been quite a wild ride!
Great video- thank you for explaining the difference in how a doctor treats us.
Personally I have the best Neuro. He’s got a great style & treats my MS & me. You got me back out of bed/ TN eased thank god. 🙏🏻 switching my DMD was imperative- ty so much for doing what you do. #Sharingiscaring.
#DrAaronBosterRocks
Love your style of saying it as it is! Ty 🤗
Helps us keep so much informed!
Thankyou Aaron.
You are entirely helpfull.
Very little can be conveyed in a 15 minute phone consultation waited on for for 6 months.
I keep a daily journal so as to be scrupulous in not missing details.
Failing medicine is also something that insurance companies insist on too (at leas here in Canada- my understanding is that it's the same in the US). The more efficacious drugs are more expensive and insurance doesn't want to pay. My neurologist had to 'prove' that I needed better meds. I'm not sure how much her hands were tied, or if she just accepted this and didn't push hard enough. She's retiring in 6 months, but if she weren't, I'd probably start looking for a new neuro (and yes, in Canada we can choose our doctors if we live in an area with choices).
My biggest complaint about her is that she makes a lot of decisions for me and not with me (but that's a whole other issue).
Thank you for this amazing series!
My doctor is a fast escalator, but I will be on induction soon (Mavenclad).
At some point, if you consider this useful, or other patients want this as well, could you please make a video comparing Mavenclad and Lemtrada? To me, they seem the same, only one is a pill, the other an infusion.
I do know my doctor’s style and I agree completely! 😃
Incredible👍
Thank you Dr Boster awesome video. I am a 💯 for the early application of highly effective therapies or an induction approach. In NZ the neuro was definitely escalation approach so thank goodness for you, you empowered me to ask to be put on a highly effective therapy 😁🔥🔥🔥🔥🔥
Can you please do a video on Functional Medicine? I see this brought up in so many MS groups. It seems like quackery to me but I'd like to hear your take.
Unfortunately I’ve been in the MS community long enough that the only thing early on were the CRAB drugs. My 1st year I went through 3 neurologists for a variety of reasons but the 4th was a study doctor and she was very much into using whatever appeared to be the most effective. I was with her for 10 years before switching to my current doctor (also a study practice) and have cycled up to Lemtrada. After 5 years on Lemtrada there’s been breakthrough activity and I’m really not sure how to go now.
Thank you for teaching me about my disease.
Im57 and my doc went dirwctly to the ocrevis 2 years ago
Rebif -> Tecfidera -> Ocrevus (over a 12 year period). Name that approach?
I am with you Dr B. It's our bodies. Currently, there is no turning back! Thanks for all you do!
Thank you, Dr. Boster for another great snippet of she advise regarding treatment. I was on Vumerity/Tecfidera for two years before being upgraded to Ocrevus this year. I hope, now, that my MRIs show no progression since I'm showing no side effects from the treatment.
Very informative as always. Very grateful for your videos!
Glad you like them!
Thank you doctor for another great video. If I had known 5 years ago what I know now I definitely would not have started with Copaxone that's for sure
What if ‘induction’ is not true reconstitution but actually equivalent to long-term immunosuppression? Because we see that certain cell types take years to come back..
I was diagnosed with CIS, just one spot on brain MRI. Spine was normal. Doc says no treatment because not enough evidence to support treating. Any thoughts?
I started with Lemtrada as 1st tier instead of the stair stepping approach that only insurance companies want! 😢 I was fortunate that my neurologist was persistent and able to get the Lemtrada for me as 1st tier... my first and only treatment ever. When Insurance tries to be more of your guide than your Dr. its a problem. Do whats right for the patience's. I paid my insurance premium for 30 years and never used it... I should of used a tier system for my premiums. What if the Dr. decided your insurance premiums... Doesn't work for insurance and it doesn't work work for the Dr. either. Let the Dr. be the Dr. end of story. Start with the best first!!!
It’s not always the doctors, it’s the insurance companies. I have great company insurance and they will not approve Kesimpta but they will for Aubagio and Copaxone.
Edit- I was finally approved. Keep at it. Be your own advocate!
I don't know if I have MS just yet, but have had 3 brain injuries - one each at age 5, 19 and 51.
I have had since my 20s problems with my hands not wanting to follow instructions and be very weak. I have very quick muscle wasting when I don't constantly move, and chronic stiffness when not in motion.
After this last injury, I occasionally need to wear double hearing protection because of high sensitivity to loud noises, weakness in my knees that happened at only one spot of bending can now send me to the ground, leg cramps started about a year ago and back spasms started in October, bouts of panic and racing thoughts have increased greatly and sleep is very poor.
While waiting for a proper Dr. appointment, I am starting a Paleo diet to see if it helps. Whether this is MS or just my brain injuries, this diet seems to address repairing Neuro pathways, cleansing inflammation and general healing.
Thank you for your work, let's see if I can get this old body working better again.
As always, Dr., you’re amazing your style and your information that you provide us is priceless. How do you break things down every day so we can understand this complex disease
My Neuro gave me the option of 3 efficacy levels: Ocrevus, trifecta, copaxone. However, opted for a Fenebrutinib trial
I'm considering switching to Mavenclad but, as it reduces lymphocytes, I am worried about recent reports of severe fungal infections post covid caused by lymphopenia. In this Covid era, is Mavenclad a sensible choice?
I’m 77 and off MS meds for many years. MS for over 30 years. My doctor’s style wasn’t mentioned. Since my MS isn’t active, she believes nothing will help.
Hey Doc, talk about remielinatyon, Pons device, electric protein chock please Love U
How do you get around insurance companies with step therapy requirements??
Massive thanks for all that you do; I've learned so much from your videos. I have a question: I'm about to start Mavenclad (my first DMT) in a little over a week. I know about the rebooting of my immune system, but when I asked my neurologist in Berlin if there was anything that I could do to assist or encourage that reboot (i.e. with supplements or a focus on nutrition), he recommended against doing anything of the sort, and said that it's important to allow my immune system to regenerate at its own pace, naturally and without any specific external assistance. Really curious to hear your thoughts. And thanks again.
I was recently diagnosed with MS. Dr hit it hard right out of the gate. Rituximab infusion session 1 completed. Sessions 2 and 3 to be scheduled shortly. I appreciate your perspective and communications. My Dr doesn't seem to talk much. Just in .. .. Hi, how's it going? and out. Always in a rush and not much conversation on MS info or advice (unless I ask a specific question). Thanks Again.
Is tysabri a good medicine to be on. I have ppms
My nuero wants me to try Briumvi, Zeposia doesn't seem to be working. I know it is new so I am a bit worried.
Any thoughts on HSCT?
Thank you for a lot of useful and practical content.
Would Fingolimod as the first DMT be an example of the escalation style?
Hello, I am 55 and have had M.S. since I was 21 years old. I had 3 attacks and when I had the last attack at 30 years old, which is when I was put on medicine. I have been taking Copaxone for about 20 years. I would love to switch to a pill, but am unsure what to do.
Question for you, I was on tysabri and did very good, my job required 3 days at work and I caught a cold, and my dr changed me to ocrevus I have been on it 3 months and I feel horrible what should I do?
Thanks Dr. for your knowledge and pushing it out to all who listen! I wish I would have known this information from the get go (but that’s a novel and common thought I’m sure).
However, being a person of 55 (diagnosed at 42) and started on a low efficacy DMT (Copaxone-Generics the entire time).Is changing now at 55+ to a higher efficacy DMT that covers both RRMS and SPMS a bad thought?
I would like to switch to something that would address the needle fatigue as well. I have been researching various possibilities and likeliness of insurance acceptance since that truly is a hurdle in itself. I would love to know your thoughts.
I have not been diagnosed with SPMS, but I personally feel I am headed in the direction of SPMS. I have not had any MRI’s that show any worsening but sure do feel it in the way symptom progression!! I do not want to wait until things worsen beyond being able to come back from worsened or addition symptoms. I cannot afford to not work to maintain basic life and quality of life (Quality of life right now is living to work and resting so I can work.).
Thank you for this video. My question is if you do well with a low efficacy DMT such as Avonex at the beginning of your treatment, should you stop taking the DMT? If your relapses are few and no new lesions in a two year period, is that evidence that you no longer need a DMT? Also, what are examples of neurological progression of MS? Thanks again for all the information you post. 🧡
My neuro said MS doesn’t hurt. He added it must be something else. Dismissed.
Hi Aaron,
could you possibly give a small clarification on how to understand different styles of MS treatment?
Would Fingolimod as the first DMT be an example of the escalation style? And if not, then what other style would that be?
I have watched your videos for a while now. As a 61 yr old female, am I to understand, I'm at the end of the road for diagnosis and/or treatment?
I've had several symptoms that have been ignored and brushed aside, by Dr. and myself, as aging. At this point in my life, is it even worth seeing a neurologist, or am I too old to even hope for relief?
Don't give up hope! If your Dr isn't taking you seriously or you feel uneasy with them, find a new one or at least get a second opinion. I know it's a lot to deal with but hang in there!
I would love to follow the high efficacy model but the netherlands doesn't follow this sadly. Please feel free to bash holland / the netherlands and use it as an example of poor treatment practice. I said to my neurologist I wanted Ocrevus. He proceeded to tell me someone died on it and advised me not to take it / take vumerity. Now I have to wait till i get worse to get better medicine. Horrible and ethically messed up situation that we are not allowed to have access to the best treatment (until we progress *) . It's very backwards - I could have been taking the treatment that would have prevented the relapse from ever occurring in the first place...
Good morning Dr. Boster! Thanks as always for your thoughts! I am most comfortable with the escalation model myself, but completely understand that thoughts of starting with a higher efficacy drug. Do you have any experience within your practice of patients doing a combination of diet and lifestyle changes (5 for 5) on lower efficacy drugs? I would love to hear your experience with this? So far I am doing well on a lower efficacy drug along with diet and lifestyle changes.
Of course he liked your comment, but didn't respond.. go figure.
Escalation model is necessary when healthcare is universal. They aren’t given much of a choice.
Dear Aaron,
I am an RRMS patient. High-efficacy medications lack long-term safety records. Tysabri and PML connection is a significant example. Do we have any high-efficacy medication with 15 years of safety records? Some of us are diagnosed in our early 30s or even 20s. If we can use a high-efficacy drug for only 7-10 years, isn't it a waste of opportunity for our future? Can we really trust high-efficacy medications for now? Tysabri, Ocrevus, Mavenclad and others?
In my opinion, for long-term results, we don't have the luxury of wasting the low efficacy medications.
Thanks for the video
Thank you for your very informative and life saving lectures. What would be your take on treatment option for newly diagnosed MS in young 33 yo women with initial symptoms of right eye vision changes including blurriness and double vision. MRI showed 4 small lesions under 1 cm with one of them enhanced right next to right CN 6. MRI C-spine with indeterminate ?demyelinating spot which didn't collaborated with other slides and MRI T-spine was clean. Blood work come back with HCV high index otherwise normal. Initial plan was to start with Ocrevus but after founding HCV high index positive recommended to start with Kesimpta. It's been now about 1 month from hospital discharge. Was treated with hight steroid dose x 3 days in the hospital and discharged on tapper dose. Vision completely back to base line. Ended up to seek for second opinion and feel now that treatment is delayed. Read somewhere that approach to MS especially to first flare should be as aggressive as treatment for the stroke? Recommended to go with Kesimpta trial in order to avoid insurance restrictrictions. Please advise. Thank you.
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I have all my bloodwork for Vumerity tomorrow for RRMS. I’m really scared. I’m the chick who has a dilated central canal/syrinx too. I was only offered the one. I have been dodging this for 3 months. I am a mild case (I think). I’m getting dumber though. It’s bad.
I'm just really tired of being in a wheelchair. I was diagnosed with MS IN 1995 after I feet off of a loft bed in my sleep and hit my temple on the night stand at the bottom of the bed.
Are you on the road?😊
I recorded this video while on a family vacation in Florida this past December.
@@AaronBosterMD always thinking of us - even while on vacation- you are loved by everyone in all states,countries and beyond! You truly have my respect for your dedication not just to your clients but to us all dealing with this disease- I have been following your channel and ,respected your knowledge way before you opened your own clinic- I wish you where here in Ontario Canada 😂 I have learned so much from you- thank you 🙏🏻- Nancy
Hi from Israel I enjoy hearing your advices I have learned a lot my daughter was diagnosed on July this year and all my time I spend on looking to help her l am a nurse so it is easy for me to understsnd alot she is on tysabri for 5 month after every treatment she felt horrible the last treatment her Dr suggested to put 600 ml liquid after the tysabri instead 100 ml she felt wonderful may be it will help for otherness thanks again and bless you
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I agree, that the language is so clear & understandable. Thank you
And ur jokes are funny, neurologist doest dress as good hahaha,I don't think so
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Hidie Ho Doc!!! Okie from Muskogee here. I'm on Rebif, dx in 04/22, but I think that I've had this since about 1980. I'm trying to get into the HOPE bio stem cell research. I can't just allow this illness to take over. Honestly, I wish that it involved chemo because killing off a nasty nazi genocidal immune system and replacing it with new little happy puppy type stem cells seems right.
Thank you for your very informative and life saving lectures. What would be your take on treatment option for newly diagnosed MS in young 33 yo women with initial symptoms of right eye vision changes including blurriness and double vision. MRI showed 4 small lesions under 1 cm with one of them enhanced right next to right CN 6. MRI C-spine with indeterminate ?demyelinating spot which didn't collaborated with other slides and MRI T-spine was clean. Blood work come back with HCV high index otherwise normal. Initial plan was to start with Ocrevus but after founding HCV high index recommended to start with Kesimpta. It's been now about 1 month from hospital discharge. Was treated with hight steroid dose x 3 days in the hospital and discharged on tapper dose. Vision completely back to base line. Ended up to seek for second opinion and feel now that treatment is delayed. Read somewhere that approach to MS especially to first flare should urgent just as for stroke.? Recommended to go with Kesimpta trial in order to avoid insurance restrictrictions. Please advise. Thank you.