Dr Boster, I am a 64 year old white male and was diagnosed in 2020 at 62 years old. Originally though I pinched a nerve or pulled a muscle lifting weights. Weakness in legs and numbness in hands lead to MRI and lesion was found on spine(C6). Admitted to hospital for three days of steroids and walked out after three days on own power. After a week or so leg weakness returned with balance issues. Admitted to hospital again and MRI showed another lesion (C2 active). Five days of steroids this time and left with aid of walker. Continued to get weaker and back in hospital for Plasmapheresis.Physical Therapy for 2 weeks and left hospital in wheelchair. Have been in wheelchair since with no use of my legs. I have been on Ocrevus for two years and no flair ups. Last MRI showed no lesions. Prior to being diagnosed I was healthy active non smoker and in good shape.
Hi Joe, I'm sorry to hear of your MS diagnosis & troubles. That would, at the least, be a very intense & scary situation to find yourself in! Did your Neurologist happen to say how long he thinks you have had Multiple Sclerosis? I was diagnosed years ago with Fibromyalgia, however I always felt that there was something else, as if that wasn't enough! It wasn't until I requested a referral to a Neurologist & during my 1st visit, I shared concerns of MS & the Dr said "If it helps you to feel better, MS did NOT entered my mind." 😁 Thank God he leaned on the cautious side & ordered a brain MRI. My Insurance Co DENIED it, but AGAIN Thank God, the Neurologist kept requesting & it was finally approved! 🙂 I was diagnosed with MS 3/25/21 @ the young age of 51 😉 I had a MRI of my Brain, Cervical & Thoracic, plus a Spinal Tap. I was ONLY diagnosed by my Brain MRI. When I asked the Neurologist "How many lesions do I have?" his answer was "Too many to count". 😳 After he said that, as I sat there looking at my BROKEN BRAIN on the screen, I basically heard NOTHING else! Needless to say the Dr was a tad surprised at my results & said that he estimated that it went back at the very least a DECADE & that more than likely I also had Fibromyalgia. 😥 I wanted to respond to your comment because I have been on Ocrevus since my 1st Infusion on 6/30/21, exactly 1yr after losing my Daddy. Last week was my #4 Infusion & I'm Praying, Hoping & have both my fingers & toes crossed that this ONE, I'll FEEL an improvement with my overall symptoms. I know that the main objective of Ocrevus is to slooww down the Progression of the disease, however I've had other MS patients say that between 1-2yrs of treatment, their symptoms improved greatly! 😃 I noticed that you said on your last MRI, there were NO (lesions). Did you mean "No more NEW lesions"? Or NO LESIONS AT ALL???? I'm getting my treatments through a Clinical Trial that I signed up for, which contain A LOT of benefits, however the only BAD part is that I can never see or hear of ANY results. Not even the Neurologist, over the study, is notified of the results! I was under the impression that if any NEW lesions appeared, any negative blood results, basically anything that both the Neurologist & myself should know, we WOULD definitely be notified. Unfortunately I found that I was mistaken! We will NOT be advised of ANY NEW LESIONS! 😲 Only things we'd be advised of is of anything that is in need of CRUCIAL CARE, PML 😳 for example! Sooooo another BIG reason that your comment caught my attention. I'm uncertain of what I'm going to do from here, bc IF the medication is working & I drop out of the trial, my insurance will NOT cover Ocrevus. If I stay in the trial I won't know if it's doing it's job & I don't know if I'll come out with WAY TOO MANY LESIONS TO COUNT! ☹ I'm sending you the best of wishes! Please take good care of yourself and if you haven't, check out "The National MS Society". Sincerely, A Mutual MS Warrior 🧡 Missy ☆☆ Aaron Bolster ☆☆ Can you give your thoughts concerning my situation? Whether you can or can't, Please know that I REALLY appreciate your time & YOU!
Thank you, Dr. Boster. Thank you so much for being a light in the darkness for those of us who are in rural areas, no one to turn to, and have sub-par neurologists. I drive over an hour to see mine, and the visit lasts about 15 minutes. I have yet to view any of my MRI'S, and I was diagnosed 2 years ago. What I wouldn't do to live in Ohio! I am very grateful for your videos.
Hi Dr. Boster, what you said about telling you what’s wrong so you can help is exactly what I spoke about with my physio today. Because I choose to suffer in stead of share because I’ve had so many doctors say I was just imagining things. So now the fingers of my good hand have started getting stiffer 3 weeks ago and it feels perfectly safe to tell you this here, but I’ve not told my neurologist yet. Even though I trust him completely. So, the point I’m telling you this is, that it sounds so easy to just pick up the phone and ring your neurologist. But to some it’s not that easy, and I know quite a lot of people with MS who have had traumatic experiences with doctors not believing them a/o getting send to a psychologist. I think that might be something to address in a video. In a positive way, telling what the options are if you have or have had a doctor who doesn’t treat you seriously. Ps. Your videos helped me after my diagnosis, you have truly made a difference in my life. Thank you.
Dr Boster, You are such an inspiration to me as an acute care RN AND M.S. patient! Can you speak to why increasing Ocrevus infusion rate might create far more post infusion side effects..... I have done great post infusion all other times (headache/fatigue) but recently my infusion was expedited to 3 hrs and I felt like I was hit by a train for days!?
Dr. B, I've said many times.. you are fantastic!! .. you explain MS concerns that is easy to understand.. ...your example about UTI made so much sense after your explanation!!👍🏽💕
I want to thank you for all the wonderful videos you have provided, you have truly educated me and many others. I saw the video regarding "red flags" for the Neurologist, and I took your advice and changed neurologist. I want to ask if you can provide us all with a video, what are the expectations of your new MRI once you have started your first DMT. When you do the new MRI, and what to expect
Thank you for including bedroom in your 'down theres'. It's a part of many people's lives, including mine and hubby's. I was somewhat traumatised when I had a relapse and went numb from the waist down. Luckily it wasn't permanent but it worried me almost as much as not being able to walk did! Be honest with your neuro folks. Our lives aren't just can you eat, sleep, pee and poop but can you enjoy life and reproduce if you want to.
I think I've said this before but your videos have taught me more about My MS & MS in general than I've learned in the almost 13yrs of being diagnosed! I do have a question about pseudo relapses--How long can they last?
I get pseudo relapses anytime my body temp rises due to exercise, diet, infection, or stress - it's called Uthoff's phenomenon. Once I cool down and relax my symptoms go away. If it's triggered by certain food, I try to avoid it - for me that's mainly dairy, sat fat, sugar and baked goods, & omega 6 oils. I have significant vision loss in one eye, but during my pseudo relapses my vision gets blurry and cloudy in both eyes and I sometimes get very fatigued which affects my balance and strength in my legs. I was diagnosed 2 years ago at 35, but my first relapse was likely at age 19. Vision loss and balance issues came on slowly around 28 years old, which went misdiagnosed until my vision declined significantly about 2 years ago and prompted investigation.
Being five for five is something that we can all do or strive for to benefit ourselves. Thank you for giving us these great tools that enable us to live our best life! #Sharingiscaring #strongertogether #mavencladmilf
I wish every neurologist was "a weirdo" like you 😁 your videos are so helpful and I just wish you could train more to be like you. I have a lovely neurologist but she dismisses everything that isn't obvious MS as not being something she can help with. I also appreciate your firefly fandom 🎇
Hi Dr Boster. Really great videos. Thank you for all the help you are providing. How to reach out to you by email? I wrote to clinic but without any response. Tnx in advance.
Great info, you're so awesome! Question: If someone has a pseudo attack due to an old symptom flaring, would there likely be a new or enhanced lesion seen on mri? Always wondered about this.
Hello Doctor, I had covid in Jan& again in July of 2022 recovered without any issues. Then in Sept I started having extreme fatigue,insomnia for abt 7 weeks along with 1 episode of low blood sugar which I was hospitalized and did all the work up and everything came back normal. In the meantime I developed tachycardia, numbness and tingling in my hands feet, tingling in the face and also tremor and occasional dizziness. I also feel like I am having these vibrating sensations. Also bugs crawling sensations some times. I was really weak in the beginning of all these and seems to be getting better with that,but nothing like prior to all these happened. My pcp said its probably post covid complications. I was totally a healthy person prior to all this.But I am really concerned. What do you think ? Are you seeing pts that has post covid complications like these or could it be something else? Hope to hear from you. By the way I am one of your newest follower. Thank you for your time.
Hi doc! Your videos have been so helpful, but I have a specific question about medication and managing chronic symptoms. Since ms symptoms onset: 2016: NO Start medication end of 2017(BC of complaints other eye), copaxone(3mo), aubagio (6mo) and then at start of 2018 Asclepios trial. (Ofatumumab) Ever since I had COVID in February this year, my energy level and ms haven't been as calm as they were before (smouldering ms, not active in brain). I've been on kesimpta for over 3 years and my MRI hasn't changed in years. Obviously, not having new lesions is great news. nowadays you'll always read that starting off with a highly effective DMT rightaway leads to less disability longterm, but my neuro says my body could use a break from Kesimpta. I've noticed that docs here in the NLs aren't as progressive as you are over there. Would you recommend I'd stop? I have no side effects from Kesimpta and my b-cells and other blood test results are good. I saw your video on when to stop with medication, but I don't recall you saying stop it if it's going well. I've had a second opinion, but neuros keep saying that I should just use a first line treatment since my ms isn't active.
I m faced with that right now if I should go on a modifying medicine or just ride it out n see what happens is this a good idea I’m afraid to take the medicine 😢
I. Personally feel like I need 10 years of physical therapy to the government has to pay for it. The biggest problem with the MS is spasms in my legs not A muscle twitch but full on my legs spasms are full on kick enough to make my whole body jump. Then after that happens I get alot of pain in the back of my neck it feels like a person is grabbing the back of my head neck
Do me a favor: Can you please send me a link to a copy of the Ocravus US label, or anything that says that Ocravus can be given after 5 months? I switched to a new neurologist who LISTENED, BELIEVED me, and wrote a FIRM instruction to administer me Ocravus every 20 weeks instead of every 24 weeks. The insurance didn't budge, and wrote something vague in their refusal about providing medical literature supporting the neurologist's recommendation. Thanks from Jerusalem!
The clinical trials, OPERA1 and OPERA2, which led to the approval in RMS and PPMS, dosed every 24 weeks. The US FDA opted to interpret this as 6 months, but 24 weeks doesn't exactly = 6 months. When I discuss with insurance docs, I show them the original paper that demonstrates the 24 week dosing.
@@AaronBosterMD You mean it ISN'T written anywhere that Ocravus can (in principle) be given starting after 5 months? I thought it was stated in the User's Guide! 😳
None of this seems to address comorbidities. I'm 73 and worked horses most of my life. It was my back specialist who decided that I had more going on than broken vertebrae and replaced hips. I finally have a neurologist who seems to get me. Most people look at a 73-year-old woman and sort of blow off all the other things going on in her life. My husband has cancer and when he has a problem I freak. That triggers all sorts of other issues in my body.
Hi Dr B, I have a question. I’ve had MS for ten years and my recent MRI shows no inflammation yet I’m getting much worse, what does this mean? Hopeful for a reply. X
Lindsey, it means the MS is progressing relentlessly despite the DMT. The technical name is PIRA - Progression Irrespective of Relapse Activity. 😒 Join the club, and keep fighting.
I'm afraid to go on more steroids because all of the steroids ruined all of my teeth.. Now that I have dentures I do not wear them Because when I pull them out it makes me puke. I'm on OCREVUES and feel like crap for money after every treatment of OCREVUES
![Take Control of Your Multiple Sclerosis: Get Moving and No Smoking Stuff [PART 3 of 4]](http://i.ytimg.com/vi/53Hj2M-tzUs/mqdefault.jpg)
![Take Control of Your Multiple Sclerosis: Get Moving and No Smoking Stuff [PART 3 of 4]](/img/tr.png)
![“อาร์ต พศุตม์” เกือบเอี่ยวทุกคดีดัง เอ๊ะไว้ก่อน ไม่มีอะไรได้มาง่ายๆ | แฉ 16 ต.ค. 67 [2/3] | GMM25](http://i.ytimg.com/vi/0Gx-0-kUBv8/mqdefault.jpg)
Dr Boster, I am a 64 year old white male and was diagnosed in 2020 at 62 years old. Originally though I pinched a nerve or pulled a muscle lifting weights. Weakness in legs and numbness in hands lead to MRI and lesion was found on spine(C6). Admitted to hospital for three days of steroids and walked out after three days on own power. After a week or so leg weakness returned with balance issues. Admitted to hospital again and MRI showed another lesion (C2 active). Five days of steroids this time and left with aid of walker. Continued to get weaker and back in hospital for Plasmapheresis.Physical Therapy for 2 weeks and left hospital in wheelchair. Have been in wheelchair since with no use of my legs. I have been on Ocrevus for two years and no flair ups. Last MRI showed no lesions. Prior to being diagnosed I was healthy active non smoker and in good shape.
Welcome to the club... 😏
Hi Joe,
I'm sorry to hear of your MS diagnosis & troubles. That would, at the least, be a very intense & scary situation to find yourself in! Did your Neurologist happen to say how long he thinks you have had Multiple Sclerosis?
I was diagnosed years ago with Fibromyalgia, however I always felt that there was something else, as if that wasn't enough! It wasn't until I requested a referral to a Neurologist & during my 1st visit, I shared concerns of MS & the Dr said "If it helps you to feel better, MS did NOT entered my mind." 😁 Thank God he leaned on the cautious side & ordered a brain MRI. My Insurance Co DENIED it, but AGAIN Thank God, the Neurologist kept requesting & it was finally approved! 🙂
I was diagnosed with MS 3/25/21 @ the young age of 51 😉 I had a MRI of my Brain, Cervical & Thoracic, plus a Spinal Tap. I was ONLY diagnosed by my Brain MRI. When I asked the Neurologist "How many lesions do I have?" his answer was "Too many to count". 😳 After he said that, as I sat there looking at my BROKEN BRAIN on the screen, I basically heard NOTHING else! Needless to say the Dr was a tad surprised at my results & said that he estimated that it went back at the very least a DECADE & that more than likely I also had Fibromyalgia. 😥
I wanted to respond to your comment because I have been on Ocrevus since my 1st Infusion on 6/30/21, exactly 1yr after losing my Daddy. Last week was my #4 Infusion & I'm Praying, Hoping & have both my fingers & toes crossed that this ONE, I'll FEEL an improvement with my overall symptoms. I know that the main objective of Ocrevus is to slooww down the Progression of the disease, however I've had other MS patients say that between 1-2yrs of treatment, their symptoms improved greatly! 😃 I noticed that you said on your last MRI, there were NO (lesions). Did you mean "No more NEW lesions"? Or NO LESIONS AT ALL????
I'm getting my treatments through a Clinical Trial that I signed up for, which contain A LOT of benefits, however the only BAD part is that I can never see or hear of ANY results. Not even the Neurologist, over the study, is notified of the results! I was under the impression that if any NEW lesions appeared, any negative blood results, basically anything that both the Neurologist & myself should know, we WOULD definitely be notified. Unfortunately I found that I was mistaken! We will NOT be advised of ANY NEW LESIONS! 😲 Only things we'd be advised of is of anything that is in need of CRUCIAL CARE, PML 😳 for example! Sooooo another BIG reason that your comment caught my attention. I'm uncertain of what I'm going to do from here, bc IF the medication is working & I drop out of the trial, my insurance will NOT cover Ocrevus. If I stay in the trial I won't know if it's doing it's job & I don't know if I'll come out with WAY TOO MANY LESIONS TO COUNT! ☹
I'm sending you the best of wishes! Please take good care of yourself and if you haven't, check out "The National MS Society".
Sincerely,
A Mutual MS Warrior 🧡
Missy
☆☆ Aaron Bolster ☆☆
Can you give your thoughts concerning my situation?
Whether you can or can't, Please know that I REALLY appreciate your time & YOU!
Thank you, Dr. Boster. Thank you so much for being a light in the darkness for those of us who are in rural areas, no one to turn to, and have sub-par neurologists. I drive over an hour to see mine, and the visit lasts about 15 minutes. I have yet to view any of my MRI'S, and I was diagnosed 2 years ago. What I wouldn't do to live in Ohio! I am very grateful for your videos.
road trip!
You are the man Dr. Boster!
Hi Dr. Boster, what you said about telling you what’s wrong so you can help is exactly what I spoke about with my physio today. Because I choose to suffer in stead of share because I’ve had so many doctors say I was just imagining things. So now the fingers of my good hand have started getting stiffer 3 weeks ago and it feels perfectly safe to tell you this here, but I’ve not told my neurologist yet. Even though I trust him completely. So, the point I’m telling you this is, that it sounds so easy to just pick up the phone and ring your neurologist. But to some it’s not that easy, and I know quite a lot of people with MS who have had traumatic experiences with doctors not believing them a/o getting send to a psychologist. I think that might be something to address in a video. In a positive way, telling what the options are if you have or have had a doctor who doesn’t treat you seriously. Ps. Your videos helped me after my diagnosis, you have truly made a difference in my life. Thank you.
Absolutely!!!
Dr Boster, You are such an inspiration to me as an acute care RN AND M.S. patient! Can you speak to why increasing Ocrevus infusion rate might create far more post infusion side effects..... I have done great post infusion all other times (headache/fatigue) but recently my infusion was expedited to 3 hrs and I felt like I was hit by a train for days!?
Dr. B, I've said many times.. you are fantastic!! .. you explain MS concerns that is easy to understand.. ...your example about UTI made so much sense after your explanation!!👍🏽💕
I want to thank you for all the wonderful videos you have provided, you have truly educated me and many others. I saw the video regarding "red flags" for the Neurologist, and I took your advice and changed neurologist.
I want to ask if you can provide us all with a video, what are the expectations of your new MRI once you have started your first DMT. When you do the new MRI, and what to expect
ty for sharing doc
Thank you for including bedroom in your 'down theres'. It's a part of many people's lives, including mine and hubby's. I was somewhat traumatised when I had a relapse and went numb from the waist down. Luckily it wasn't permanent but it worried me almost as much as not being able to walk did! Be honest with your neuro folks. Our lives aren't just can you eat, sleep, pee and poop but can you enjoy life and reproduce if you want to.
Another great video! Thank you!
Thanks for watching!
I love your colorful scarf and sweatshirt! Your dog is so cute! Thank you for the video, very informative.
You are so kind
@@AaronBosterMD If I didn't mean it, I wouldn't have written it.
I think I've said this before but your videos have taught me more about My MS & MS in general than I've learned in the almost 13yrs of being diagnosed!
I do have a question about pseudo relapses--How long can they last?
I get pseudo relapses anytime my body temp rises due to exercise, diet, infection, or stress - it's called Uthoff's phenomenon. Once I cool down and relax my symptoms go away. If it's triggered by certain food, I try to avoid it - for me that's mainly dairy, sat fat, sugar and baked goods, & omega 6 oils. I have significant vision loss in one eye, but during my pseudo relapses my vision gets blurry and cloudy in both eyes and I sometimes get very fatigued which affects my balance and strength in my legs.
I was diagnosed 2 years ago at 35, but my first relapse was likely at age 19. Vision loss and balance issues came on slowly around 28 years old, which went misdiagnosed until my vision declined significantly about 2 years ago and prompted investigation.
Being five for five is something that we can all do or strive for to benefit ourselves. Thank you for giving us these great tools that enable us to live our best life! #Sharingiscaring #strongertogether
#mavencladmilf
#WeHaveMS #StrongerTogether BosterMS.com
I always forget the #BosterMS.com
Thank you for the Monday morning video. Always helpful. Doug coffee in hand from Lyndhurst.
Morning!
I hear you talk about the brain and MS, do you have insight into spinal damage? My damage is at T11 and T12..
I wish every neurologist was "a weirdo" like you 😁 your videos are so helpful and I just wish you could train more to be like you. I have a lovely neurologist but she dismisses everything that isn't obvious MS as not being something she can help with.
I also appreciate your firefly fandom 🎇
Hi Dr Boster. Really great videos. Thank you for all the help you are providing. How to reach out to you by email? I wrote to clinic but without any response. Tnx in advance.
Great info, you're so awesome! Question: If someone has a pseudo attack due to an old symptom flaring, would there likely be a new or enhanced lesion seen on mri? Always wondered about this.
Hello Doctor, I had covid in Jan& again in July of 2022 recovered without any issues. Then in Sept I started having extreme fatigue,insomnia for abt 7 weeks along with 1 episode of low blood sugar which I was hospitalized and did all the work up and everything came back normal. In the meantime I developed tachycardia, numbness and tingling in my hands feet, tingling in the face and also tremor and occasional dizziness. I also feel like I am having these vibrating sensations. Also bugs crawling sensations some times. I was really weak in the beginning of all these and seems to be getting better with that,but nothing like prior to all these happened. My pcp said its probably post covid complications. I was totally a healthy person prior to all this.But I am really concerned. What do you think ? Are you seeing pts that has post covid complications like these or could it be something else? Hope to hear from you. By the way I am one of your newest follower. Thank you for your time.
Hi doc! Your videos have been so helpful, but I have a specific question about medication and managing chronic symptoms.
Since ms symptoms onset: 2016: NO
Start medication end of 2017(BC of complaints other eye), copaxone(3mo), aubagio (6mo) and then at start of 2018 Asclepios trial. (Ofatumumab)
Ever since I had COVID in February this year, my energy level and ms haven't been as calm as they were before (smouldering ms, not active in brain). I've been on kesimpta for over 3 years and my MRI hasn't changed in years. Obviously, not having new lesions is great news. nowadays you'll always read that starting off with a highly effective DMT rightaway leads to less disability longterm, but my neuro says my body could use a break from Kesimpta. I've noticed that docs here in the NLs aren't as progressive as you are over there. Would you recommend I'd stop? I have no side effects from Kesimpta and my b-cells and other blood test results are good. I saw your video on when to stop with medication, but I don't recall you saying stop it if it's going well. I've had a second opinion, but neuros keep saying that I should just use a first line treatment since my ms isn't active.
I m faced with that right now if I should go on a modifying medicine or just ride it out n see what happens is this a good idea I’m afraid to take the medicine 😢
I. Personally feel like I need 10 years of physical therapy to the government has to pay for it.
The biggest problem with the MS is spasms in my legs not A muscle twitch but full on my legs spasms are full on kick enough to make my whole body jump. Then after that happens I get alot of pain in the back of my neck it feels like a person is grabbing the back of my head neck
Will smoking a cigar every other months affect MS or is it cigarette smoking what is damaging?
Do me a favor: Can you please send me a link to a copy of the Ocravus US label, or anything that says that Ocravus can be given after 5 months? I switched to a new neurologist who LISTENED, BELIEVED me, and wrote a FIRM instruction to administer me Ocravus every 20 weeks instead of every 24 weeks. The insurance didn't budge, and wrote something vague in their refusal about providing medical literature supporting the neurologist's recommendation. Thanks from Jerusalem!
The clinical trials, OPERA1 and OPERA2, which led to the approval in RMS and PPMS, dosed every 24 weeks. The US FDA opted to interpret this as 6 months, but 24 weeks doesn't exactly = 6 months. When I discuss with insurance docs, I show them the original paper that demonstrates the 24 week dosing.
@@AaronBosterMD You mean it ISN'T written anywhere that Ocravus can (in principle) be given starting after 5 months? I thought it was stated in the User's Guide! 😳
None of this seems to address comorbidities. I'm 73 and worked horses most of my life. It was my back specialist who decided that I had more going on than broken vertebrae and replaced hips. I finally have a neurologist who seems to get me. Most people look at a 73-year-old woman and sort of blow off all the other things going on in her life. My husband has cancer and when he has a problem I freak. That triggers all sorts of other issues in my body.
Hi Dr B, I have a question. I’ve had MS for ten years and my recent MRI shows no inflammation yet I’m getting much worse, what does this mean?
Hopeful for a reply. X
Lindsey, it means the MS is progressing relentlessly despite the DMT. The technical name is PIRA - Progression Irrespective of Relapse Activity. 😒 Join the club, and keep fighting.
@@Jerusalem_Warrior Thankyou so much for your reply , at least it gives me a starting point. Many thanks from the UK. X
@@lindseymcmullen-vickers4257 are you on DMT?
I'm afraid to go on more steroids because all of the steroids ruined all of my teeth.. Now that I have dentures I do not wear them Because when I pull them out it makes me puke. I'm on OCREVUES and feel like crap for money after every treatment of OCREVUES
I hear you talk about the brain and MS, do you have insight into spinal damage? My damage is at T11 and T12..