Excellent,I am sorry I missed this live in the AM.Wonderful information Thanks a ton Doc. >) Truly appreciated!! Watched the whole video and some really excellent info. :D
Aaron Boster MD is the single most informative clinician and individual with anything and everything MS on TH-cam that is not sponsored by a drug company or other intent. Not an opinion (as of 4/29/2016 I no longer form them) but infallible. A fact with truth like 1+1=2. 🍊
About 4:34 minutes into this #replay of the #live, Gift Boutique asked a question. I’m not sure how to address that question directly, so am adding it as a public comment in hopes that it is seen. Gift Boutique? As an MS caregiver of a 22-year-old young man diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) when he was 15-years-old, it has been necessary for his father and I to walk along side him. Now? It’s a privilege! #WeHaveMs! I have found, that when addressing additional friends/family members regarding his health, that walking with our son is imperative not only for support purposes but for proposed understanding of his condition on a moment by moment basis. And sometimes, his dad and I STILL miss the boat on what he’s going through. I believe Dr. Boster is spot on in suggesting taking your children who appear to be in denial to an appointment with you. At the very least, observing and listening, as a family member/care giver enables us, as best we can, to draw parallels from our world to glimpse into his. Example: We have learned to liken our son’s motor fatigue to what occurs after an extended period of buoyancy in a swimming pool. We can explain, to the world at large, that our son’s motor fatigue can be likened to the same feeling of heaviness his father and I feel once we exit a swimming pool. Only, until the brain/spinal cord, in the case of RRMS, may begin to heal itself to some extent or the pseudo symptom abates, the feeling of heaviness does not dissipate. He lives with that feeling 24/7. And then his father and I further add, as Dr. Boster indicated, that the most common MS symptom verbalized is chronic fatigue. And is it any wonder? They body has to work over-time to perform the basest of skills sometimes. Is it any wonder the body feels fatigue the rest of us cannot fathom? What we take for granted can be a daily effort. This knowledge is empowering as a care giver but more importantly as a human being. It increases our ability to advocate better, empathize better, and be more thankful for what we ALL take for granted in our lives on a daily basis.
Just watched your Q@A session from this morning, so much helpful information. I often think my neuro thinks I'm bonkers or a liar especially when the scans come back with nothing active. Feel much better having listened to you, thank you. If I ever visit Ohio coffee is on me!
In response to the discussion on using (or not) canes and wheelchairs. I am re-posting this comment from the Vid on is your cane fitted properly? Like, missing a medication, I can get by without my cane for a day or so but then I begin missing it! I use my cane (single point stick) to: • Improve my balance • Improve my endurance • Decrease pain and spasm • Reduce fatigue • Prevent falls in public spaces • Develop confidence with different floor/ground surfaces and gradients • Increasing my physical activity • Preventing wear and tear on my shoes. But it has not all been positive. I have had to accept my physical limitations, and the fact that a cane is not just for old people; It is a tool for everyday living. So yeh, me and my old lady stick are getting along just fine! 😊
I’m sorry I missed this live! However,thank goodness for all of this modern technology.. I’m on the west coast so I’m watching at 11 pm.as always, excellent segment. Just a comment to the viewer asking about a later life diagnosis. I was diagnosed 4.5 years ago at the age of 60. I have a brother with MS that was diagnosed at the age of 40. How lucky are we?!? Just wanted to let her know that I’m proof that she’s not alone.
"Howdy" Dr Boster!! I'm messaging from Northeastern Pa. As a nurse, i truly enjoy your extremely informative videos! I've gained a wealth of information that have helped me to gain a much better understanding of MS. I'm also in the midst of a "work up" for MS. Thank you for all that you do! I'll keep this as generic as possible. What is the current (most recent) diagnostic criteria required for MS...or rather to make an MS diagnosis?
Thanks Dr Boster, I really appreciate all your hard work. I can't begin to image how you fit it all in. Thanks to your family also for them sharing you and your time
Awe, I missed the live stream and was awake, but too lazy to roll over and turn my iPad on. 🤪 you’re the most compassionate neurologist I know, besides the one I see. I love that you care about everyone with M.S. even if they aren’t your patient. Thank you! ❤️
I use a wheelchair to conserve energy or when I’m going places alone. I have a power rehab chair. Pink of course! Nobody has ever been mean to me. I get compliments. Maybe it’s my pretty fairy wings. I make it look fun for people, especially kids, to look at.
Thank you for the gift of your time, knowledge, and compassion. The gifts that you share freely are valued more than you know. Congrats on the article in the paper. Someday I will meet you. #goals
Dr Boster you made me tear come out saying you part my village GOD BLESS YOU...GREAT DOC ....IM DREAM I BE ABLE GO TOO OHIO I USE CANE AND ALSO USE WALKER PROBLEM I LIVE 3 FL U COULD IMAGINE GOD BLESS
I'm so thankful that you do these videos. I was diagnosed last March at 60 years young. I'm anxious to see my new neurologist because mine moved to KY in October because I think I want to change medicine because I believe mine is causing acid reflux.
LOL! 😄 Medicines at the coffee maker! I am lousy at eating fruit. So, I have my fruit for the day at my coffee maker. BTW, I set my alarm on my phone and “Nurse Ratched” alerts me TDS (three times a day) … "It's Medication time!" 💊💊💊
I. Feel like I’m a chronic complainer when I suggest friends and family get educated in order to see my issues. I feel like if they really wanted to know they would educate them selves. Ultimately I feel like it’s too late and I really don’t want to subject anyone to even imagine what I go through. I know it is selfish, but I really think what I go through is the worst. And I can’t get better. I have no one compares.
Hello TheChadder, I am also a bit of a complainer, and sometimes what I share is TMI for my friends and family (F&F). So, when life gets rough, I seek/get a referral to a mental health professional (counselor/psychologist). I have done this for several years now, and I now use it to promote/maintain my sanity, including learning strategies to get me through the rough times. Most importantly, my F&F recognize when I need a “tune up” and ask, “when was the last time you saw your happy person?” 😊
Hi the chadder, I also feel like this. I have asked my family to watch one documentary about MS, just to give me a little bit of their time so that they may understand better what I go through, but none of them have done this over 8 mnths. I have joined online MS closed groups on facebook, which has really helped. Just talking with other people who completely understand what you are experiencing is a big help. The two groups I use are MS HOPE, for diet and lifestyle support and MS Society for symptom and med support.
Hi Dr Boster. Can you (or have you) posted any videos on the use and efficacy of Provigil for MS? I’m most interested in learning how many people use it, how they use it (intermittently/daily), success in reducing fatigue and cog fog, and whether they build up a tolerance over time. Thank you for all you do for all of us!
As always, good stuff! Sorry to have missed this. I think I’ve given your you tube link to at least 10-15 Other fellow ms friends in just the last month. Super proud to say you’re my neuro!
Too bad I missed the live stream!! Great info, though! With every one of your videos I learn something new. I had planned a question regarding the CSF... about the lack of IgMs at clinical onset in PPMS... i’ve read that its a sign of slower progression... I’ll keep it mind for the next Q&A! As always, thank you very much for your videos!!
Thanks again for your videos! Question If mylen is important for nerve function why do they say the mylen basic protein test in csf is not used in diagnostic criteria or it none conclusive, but they use the test sometimes to moniter if the drug modifying therapy is working it's confusing to me.
that particular test is not accurate enough to help in the diagnosis. There are two better (more accurate) spinal fluid tests that are used in the diagnosis of MS: CSF OCBs and CSF IgGI.
I enjoy all your videos and find them very helpful.. How do I access future live-streams. Do you send an e mail? Otherwise I just fall on it after it’s done. About coffee addiction. I am addicted myself to the woe of my dietician. I am currently on an ampyra study and I started ocrevous infusions this fall. Anything else I can do besides caffeine and exercise?
Doug, If you subscribe to the channel and then ring the notifications bell, it will alert you when a vid is published. I also think it alerts you when I go live, so you won't miss future Q&As!
Great videos, I've recently been diagnosed with fibromyalgia, hypermobility, osteo and rheumatoid arthritis, the more time goes on, I've been progressively getting worse over the last5 years, i am convinced i have ms not fibromyalgia. I live in the uk so its virtually impossible to ask my doctor if they could give me a brain scan to see if there are any lesions, what do I do?
2015 I was diagnosed with MS I was on tysabri for a year-and-a-half. I was not able to continue medication because of the side effects and was not able to continue seeing a neurologist because of financial matters. When I went to look for a doctor in my hometown they disagreed with the diagnosis and will not see me. I saw a neuropsych doctor in 2019 who said that I need to be on an MS modifying drug because of my relapsing-remitting. Why are the doctors in my hometown refusing to agree on a diagnosis of MS I don't know where to turn I was just told that I am getting clogged, and my eye and I do struggle off and on with declining memory issues in the last 2 years
Ah man, I missed the live stream as I was asleep. I am curious how you would rate the various MS medications in terms of effectiveness? I've mentioned in other videos that I am on Tecfidera. I'm curious how that rates on your effectiveness scale. It was the only pill form of DMT's that the neurologist who diagnosed me mentioned so that's pretty much why it was chosen. The neurologist who diagnosed me was not very informative or helpful when picking out a DMT. I do like the online village that your youtube channel is creating. Having this village makes having MS less lonely and not suck as much.
Shoot I missed it today :( If you see this Kara from Canada would love to hear more about persons who have more sensory issues like buzzing parathesia tingling numbness fatigue cognition etc vs more mobility issues... I belong to the first group and have contemplated if I have transverse myelitis or MS. Do you see patients with largely sensory symptoms only? I keep missing these so May be you might do a quick vid on this lol yup I'm asking gently much love for your dedication knowledge and passion ... Kara from Ontario! 💜 p.s. this was still great to listen to liked the fatigue piece!
@@AaronBosterMD our MS clinic doesn't sound as patient centred and resourceful as Ohio health :( but maybe it's your personability... connecting with a doctor is so important!
Hi Doc, Nice to see another video. I have a question for you and other's reading this. I was diagnosed with Fibromyalgia in my twenties. I kept telling my doctor's, it is something else. I am now 58 and found a doctor that finally did a correct MRI. Thin slice rather than large slices to see the whole brain. My doc told me, according to so many lesions, I have had this sense my twenties. I have spoke to others with MS that were also told they had Fibromyalgia years ago, to later in years find they had MS. What do you think about this. Do you think we have all be mis diagnosed, or a correlation between the two.
I really respect your thoughts and opinions. Is it a fair statement to say after the diagnosis of MS the end result will likely not change although by dealing with the big five, sleep, diet, exercise, DMds etc. It will make for a better ride?
I believe that we CAN CHANGE the natural course of the disease for the better through early use of highly effective DMTs, exercise as part of lifestyle, avoiding tobacco smoke and supplementing low vitamin D and attention to diet.
Is an upright MRI have the same results as a tube MRI? I cant do the tube style and have used upright for my last 2 MRIs so I am hopeful the results are the same. I welcome your expertise on this. Thanks Dr. B!
Hi Aaron! I'm sorry I missed this live. I think you are so Awesome. Can I please ask you a question? I was wondering if the first time you have an attack and never recover fully. You still have the slurred speech, double vision, fatigue, choking when eating and more. Is it possible to ever get back to your normal self back? Especially when it's been months.
Generally speaking, deficits that remain after 6 months will likely stick around. I've seen exceptions to this rule, however, where there is recovery even up to a year in rare situations.
I wanted to also reach out to gift boutiq... ~ I believe the topic was around the time depression was being discussed. And I'm very sorry to hear of your struggles. N I know Dr. B is so good at answering.. but due to the importance of this...I felt I must reached out. ~Furthermore, I'm sure you have your very gigantic village. And I know I'm just a stranger on this channel. But please. If u ever find your self in a bad spot and you need a friend. Or a fellow m.s. ER... Plz do not hesitate to reach out. ***In closing I feel no one should ever struggle with this. & alot of times it can even be caused by a medication. Or poly pharm. As dr. B. Calls it. :*). Depression used to be the big warning with some dmt.s...and for all the many reasons Dr b . Discussed... I know this is a hard topic to discuss as a whole ... But everyone's life is worth all the talks in the world ... ***I believe A life is un-replacable. And in turn is always worth saving and I'd sarifice every second of every day in the world to do so... If that meant I could save a life ... Sincerely Divine 💖🐤 Again thank you dr Arron. 🐤🐖
@@AaronBosterMD I apologize, you mention interferon are not the best therapy for African American MS patients Copaxone is an interferon, with my current status do you think copaxone is a good therapy for me?
My grandmother in Australia says there’s a newer drug that they have been using out there called Mavenclad. She wants me to look into it. Have you heard about this drug? If so, what are your thoughts about it? How would you compare it to Lemtrada?
This is Cladribine (trade name is Mavenclad). It's likely going to be FDA approved in US in next year. It's a solid drug. I would "bracket" it's efficacy to be high mid-range. Maybe ~ that of Gilenya (that is my personal opinion, which doesn't make me right). It is a form of micro-induction therapy and most only take pills for a few days monthly for only 2 months then nothing again for YEARS. That is provocative. In that regard, it is similar to lemtrada because they both use a form of induction therapy to treat the disease.
Thank you, so much!!!! So, just to clarify, do you believe Lemtrada’s efficacy is higher? Does Cladribine cause brain shrinkage? I’m also assuming that Cladribine isn’t so great for trying to conceive??(Sorry for so many questions. I try not to bother you with too many, as I know you are very busy!)
Gutted I missed this live, I have a question, I appreciate you may not be able to answer this but here goes...I have always had a sustained clonus in my right ankle since diagnosis however I have recently discovered I also have the exact same in my left ankle and slight in my wrists. I haven’t had a relapse since being on tysabri so I’m confused if this is a relapse or just progression? Any thoughts dr.B
From a practical standpoint, follow up MRI scans are the most valuable tool IMHO. Best to talk to your provider about what is the best plan for YOU to be followed long term.
I missed it again! Still waiting for a diagnosis but I’m curious I’m having a mri on my brain and spine again, this time they are doing a 3t imaging exactly what dose that mean???
Hello sir it's me Rosie Walia from India, ur efforts towards awareness n concern u show towards MS patients is much much appreciable....Dr . Could u plz guide me is it possible that VEP report gets better than the previous ones....According to my old VEP report dated 19.02 2019 P 100 readings were L-VEP 146.1 ms and R-VEP 150.3 ms but when the same VEP was done at a Government hospita on 04.04.2019 reading of P 100 came out L-VEP 120 ms and R-VEP 126 ms.....Even on 17.07.2018 readings were totally different L-VEP was 135.6 ms and R-VEP was 103.8ms.... Please advise at the earliest possible.
I cannot diagnose or treat you over the internet in this manner Rosie. I would need to take your complete history, do a full neurological examination, review the actual VEP wave forms, review your MRI scans, likely look at an OCT, and maybe more before I could intelligently answer your question. My channel is for medical education, to energy and empower folks impacted by MS. It does NOT replace working with YOUR MS provider.
I cannot diagnose or treat you over the internet in this manner Rosie. I would need to take your complete history, do a full neurological examination, review the actual VEP wave forms, review your MRI scans, likely look at an OCT, and maybe more before I could intelligently answer your question. My channel is for medical education, to energy and empower folks impacted by MS. It does NOT replace working with YOUR MS provider.
Just to speak from the the perspective of the folks at @OhioHealthMS, we are often comfortable with managing the first several steps through these meds before we ask for help from psychiatrists.
Hi I have commented about my situation.. Finally got appointment for spinal tap they tried 7 times and failed not a great experience and still no answers is this common
I heard that an eye doctor can tell if someone has MS,by looking into their eyes. My eye doctor told me I have hardened arteries,but didn't say anything about MS. Does that mean,that I don't have it?
I can vouch for this, as I am a carer for my nan who has dementia and severe depression. I live with my nan and having a stressful day can exacerbate my symptoms. Currently going through my second relapse in 12 mnths. I know that stress can contribute to and manifest physical symptoms in non MS people let a lone those of us living with MS. Even before MS large or prolonged exposure to stress would effect my bowels and stomach. I practise mindfullness and meditation to calm my emotions and mind when stressed and to maintain good mental health and general well being. This is only my experience.
What do you think about smoking marijuana?? I do everyday when I can because it is extremely relaxing, really the only relaxing thing I can do going through this! But I don’t think that is as bad as a cigarette? Please let me know what you think and thank you so much you are so awesome!
![COFFEE AND MS EDUCATION WITH DR. BOSTER! [LIVESTREAM]](http://i.ytimg.com/vi/8WoYVVokMAA/mqdefault.jpg)
![COFFEE AND MS EDUCATION WITH DR. BOSTER! [LIVESTREAM]](/img/tr.png)
Excellent,I am sorry I missed this live in the AM.Wonderful information Thanks a ton Doc. >) Truly appreciated!! Watched the whole video and some really excellent info. :D
Thanks Tim Man! #WeHaveMS!
I am sorry I missed this live I have a question is it necessary to check CD19 before infusion of Ocrevus
You are awesome!!! I have had MS for 27 years and you are the most thorough and involved doctor I have ever seen. Thank you!!!
hugz!
Aaron Boster MD is the single most informative clinician and individual with anything and everything MS on TH-cam that is not sponsored by a drug company or other intent. Not an opinion (as of 4/29/2016 I no longer form them) but infallible. A fact with truth like 1+1=2. 🍊
#WeHaveMS
About 4:34 minutes into this #replay of the #live, Gift Boutique asked a question. I’m not sure how to address that question directly, so am adding it as a public comment in hopes that it is seen. Gift Boutique? As an MS caregiver of a 22-year-old young man diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) when he was 15-years-old, it has been necessary for his father and I to walk along side him. Now? It’s a privilege! #WeHaveMs! I have found, that when addressing additional friends/family members regarding his health, that walking with our son is imperative not only for support purposes but for proposed understanding of his condition on a moment by moment basis. And sometimes, his dad and I STILL miss the boat on what he’s going through. I believe Dr. Boster is spot on in suggesting taking your children who appear to be in denial to an appointment with you. At the very least, observing and listening, as a family member/care giver enables us, as best we can, to draw parallels from our world to glimpse into his. Example: We have learned to liken our son’s motor fatigue to what occurs after an extended period of buoyancy in a swimming pool. We can explain, to the world at large, that our son’s motor fatigue can be likened to the same feeling of heaviness his father and I feel once we exit a swimming pool. Only, until the brain/spinal cord, in the case of RRMS, may begin to heal itself to some extent or the pseudo symptom abates, the feeling of heaviness does not dissipate. He lives with that feeling 24/7. And then his father and I further add, as Dr. Boster indicated, that the most common MS symptom verbalized is chronic fatigue. And is it any wonder? They body has to work over-time to perform the basest of skills sometimes. Is it any wonder the body feels fatigue the rest of us cannot fathom? What we take for granted can be a daily effort. This knowledge is empowering as a care giver but more importantly as a human being. It increases our ability to advocate better, empathize better, and be more thankful for what we ALL take for granted in our lives on a daily basis.
#WeHaveMS
Thank you for being part of my village Doc. I greatly appreciate you and all the members of this group for support and encouragement.
❤ you Doc.
#MakeYourVillageHUGE
So appreciate you taking the time to offer your MS knowledge through this forum Dr. Boster. Thank you very much!
YW Rachel!
Just watched your Q@A session from this morning, so much helpful information. I often think my neuro thinks I'm bonkers or a liar especially when the scans come back with nothing active. Feel much better having listened to you, thank you. If I ever visit Ohio coffee is on me!
Deal!
I took your advice during the "live" portion of the livestream, and fell sleep! Re-watching it now, lol. Very helpful and also fun haha! :)
right on, you can always watch Replay. naps are important!
In response to the discussion on using (or not) canes and wheelchairs. I am re-posting this comment from the Vid on is your cane fitted properly? Like, missing a medication, I can get by without my cane for a day or so but then I begin missing it!
I use my cane (single point stick) to:
• Improve my balance
• Improve my endurance
• Decrease pain and spasm
• Reduce fatigue
• Prevent falls in public spaces
• Develop confidence with different floor/ground surfaces and gradients
• Increasing my physical activity
• Preventing wear and tear on my shoes.
But it has not all been positive. I have had to accept my physical limitations, and the fact that a cane is not just for old people; It is a tool for everyday living. So yeh, me and my old lady stick are getting along just fine! 😊
#MSWarrior
Thank you for replying, Dr. I really wish ppl wouldn't sew negative seeds, towards ppl like myself. Again heartfelt thank you, Co Mayo Ireland
You're welcome Jane! #WeHaveMS
I’m sorry I missed this live! However,thank goodness for all of this modern technology.. I’m on the west coast so I’m watching at 11 pm.as always, excellent segment. Just a comment to the viewer asking about a later life diagnosis. I was diagnosed 4.5 years ago at the age of 60. I have a brother with MS that was diagnosed at the age of 40. How lucky are we?!? Just wanted to let her know that I’m proof that she’s not alone.
right on L Holly and TY for sharing!
"Howdy" Dr Boster!! I'm messaging from Northeastern Pa. As a nurse, i truly enjoy your extremely informative videos! I've gained a wealth of information that have helped me to gain a much better understanding of MS. I'm also in the midst of a "work up" for MS. Thank you for all that you do! I'll keep this as generic as possible. What is the current (most recent) diagnostic criteria required for MS...or rather to make an MS diagnosis?
I've made a vid on this topic and will publish it next week for you!
“It doesn’t make me right, it just makes me opinionated.” 💗 that! Going to steal it. 👿
Ha!
I missed it live but it was great on the replay thank you for being part of our village!
🤛🏻
Thanks Dr Boster, I really appreciate all your hard work. I can't begin to image how you fit it all in. Thanks to your family also for them sharing you and your time
Thanks Tony!
Awe, I missed the live stream and was awake, but too lazy to roll over and turn my iPad on. 🤪 you’re the most compassionate neurologist I know, besides the one I see. I love that you care about everyone with M.S. even if they aren’t your patient. Thank you! ❤️
I use a wheelchair to conserve energy or when I’m going places alone. I have a power rehab chair. Pink of course! Nobody has ever been mean to me. I get compliments. Maybe it’s my pretty fairy wings. I make it look fun for people, especially kids, to look at.
Sounds like a really cool chair! Tweet pix @OhioHealthMS possibly?
Thank you for the gift of your time, knowledge, and compassion. The gifts that you share freely are valued more than you know. Congrats on the article in the paper. Someday I will meet you. #goals
YW Linda!
Ole Spikeee here - I didn’t get notice of the live chat today.. I do subscribe...
Spikeee took some time off & write some new material..
Howdy JJ! Sorry we missed you. I hope you enjoyed the replay?
Dr Boster you made me tear come out saying you part my village GOD BLESS YOU...GREAT DOC ....IM DREAM I BE ABLE GO TOO OHIO I USE CANE AND ALSO USE WALKER PROBLEM I LIVE 3 FL U COULD IMAGINE GOD BLESS
Morning Doc,
Keep up the good work...
TY Ameri Tech!
Great morning, yes I can hear.
awesome sauce!
I'm so thankful that you do these videos. I was diagnosed last March at 60 years young. I'm anxious to see my new neurologist because mine moved to KY in October because I think I want to change medicine because I believe mine is causing acid reflux.
Right on Linda!
LOL! 😄 Medicines at the coffee maker! I am lousy at eating fruit. So, I have my fruit for the day at my coffee maker. BTW, I set my alarm on my phone and “Nurse Ratched” alerts me TDS (three times a day) … "It's Medication time!" 💊💊💊
Awesome life hack to help remember meds Fiona! TY!
I also have several alarms during the day and MS diary app to help me keep to my meds schedule.🙂 Very helpful
Awesome sit down and talk. Sorry I missed it live! Thumb's up video~John
TY John! #WeHaveMS
Shoot I missed it again because I was still in bed. But at least get to watch it in replay.
Sorry we missed you Shannon! Hope you dug the replay?
Love these live streams! Very helpful!
TY Kristy. I hope to do them at least monthly.
Dang! missed it live
Catch the replay Stacey!
I. Feel like I’m a chronic complainer when I suggest friends and family get educated in order to see my issues. I feel like if they really wanted to know they would educate them selves. Ultimately I feel like it’s too late and I really don’t want to subject anyone to even imagine what I go through. I know it is selfish, but I really think what I go through is the worst. And I can’t get better. I have no one compares.
#MSWarrior
Hello TheChadder,
I am also a bit of a complainer, and sometimes what I share is TMI for my friends and family (F&F). So, when life gets rough, I seek/get a referral to a mental health professional (counselor/psychologist). I have done this for several years now, and I now use it to promote/maintain my sanity, including learning strategies to get me through the rough times. Most importantly, my F&F recognize when I need a “tune up” and ask, “when was the last time you saw your happy person?” 😊
Hi the chadder,
I also feel like this. I have asked my family to watch one documentary about MS, just to give me a little bit of their time so that they may understand better what I go through, but none of them have done this over 8 mnths. I have joined online MS closed groups on facebook, which has really helped. Just talking with other people who completely understand what you are experiencing is a big help. The two groups I use are MS HOPE, for diet and lifestyle support and MS Society for symptom and med support.
Sorry I missed this! Great content. Thank you
YW Lynn!
Hi Dr Boster. Can you (or have you) posted any videos on the use and efficacy of Provigil for MS? I’m most interested in learning how many people use it, how they use it (intermittently/daily), success in reducing fatigue and cog fog, and whether they build up a tolerance over time. Thank you for all you do for all of us!
start at 13:36 th-cam.com/video/cbcs8rU_3So/w-d-xo.html
Thank You!
YW!
You're Amazing, Thank You.& Take Care & Have a Great Day!
Just kicking some MS info out there to help raise your game Jorge! #WeHaveMS
Listen to that fluent French, Doc! Sounds like you've spent a good deal of time in eastern Canada?
ha! I lived in Nantes, France for a year in HS as an exchange student about 150 years ago LOL.
@@AaronBosterMD AHA! You don't get that kind of fluency out of a classroom, Doc! Nantes! You've had some really unique, wonderful experiences!
I would like to nominate Dr. Aaron Boster for mayor of our village. Anyone agree?
I second this We need a Golden Key .. MS Village Educator
I'd welcome title of village educator on things related to MS! ha!
"MS Village Educator" yeah!!
@@AaronBosterMD you are officially our #MSVillageEducator. Thank you .
As always, good stuff! Sorry to have missed this. I think I’ve given your you tube link to at least 10-15 Other fellow ms friends in just the last month. Super proud to say you’re my neuro!
Agreed, charity davies! I have passed this link forward to a number of people, too! I am an MS caregiver. #WeHaveMs!
#WeHaveMS
Hey good morning
Howdy!
Good Morning Dr. B KELLY FROM BALTIMORE
Thank you so much for the info and all you do
YW Stephan. If you can, please pay it forward and pass along my channel to someone you know who is impacted by MS! #WeHaveMS
Crap. I was awake and hadn't taken my phone off airplane mode to know about this. I wished I had not missed it.
Howdy Erin! Sorry we missed you! Did you enjoy the replay?
Gutted I missed it. I wasn't too well. Promise I'll be there next time. ☺
Jen car, I’m an MS caregiver. I missed it, too! I feel ya! But thank goodness for #replays! :)
@@jo-joswelcomehomekollectio7274 you're so right! 😉😊 xx
Jen car xx back atcha, #WeHaveMs
#WeHaveMS
I missed it 😔. But watched the video. Thank you for everything. Merci beaucoup du Quebec.
De rien Josee! #WeHaveMS
Too bad I missed the live stream!! Great info, though! With every one of your videos I learn something new.
I had planned a question regarding the CSF... about the lack of IgMs at clinical onset in PPMS... i’ve read that its a sign of slower progression... I’ll keep it mind for the next Q&A!
As always, thank you very much for your videos!!
👍
Thanks again for your videos! Question If mylen is important for nerve function why do they say the mylen basic protein test in csf is not used in diagnostic criteria or it none conclusive, but they use the test sometimes to moniter if the drug modifying therapy is working it's confusing to me.
that particular test is not accurate enough to help in the diagnosis. There are two better (more accurate) spinal fluid tests that are used in the diagnosis of MS: CSF OCBs and CSF IgGI.
I enjoy all your videos and find them very helpful.. How do I access future live-streams. Do you send an e mail? Otherwise I just fall on it after it’s done. About coffee addiction. I am addicted myself to the woe of my dietician. I am currently on an ampyra study and I started ocrevous infusions this fall. Anything else I can do besides caffeine and exercise?
Doug, If you subscribe to the channel and then ring the notifications bell, it will alert you when a vid is published. I also think it alerts you when I go live, so you won't miss future Q&As!
I can hear you!
Great videos, I've recently been diagnosed with fibromyalgia, hypermobility, osteo and rheumatoid arthritis, the more time goes on, I've been progressively getting worse over the last5 years, i am convinced i have ms not fibromyalgia. I live in the uk so its virtually impossible to ask my doctor if they could give me a brain scan to see if there are any lesions, what do I do?
Gotta talk to your doc Gill.
so sorry I miss this . Did not fall asleep until 4 in morning...my legs would not shut up lol...thats what I call it
Howdy Margaret! Sorry we missed you but hope you enjoyed the replay? #WeHaveMS
@@AaronBosterMD it was wonderful xo
2015 I was diagnosed with MS I was on tysabri for a year-and-a-half. I was not able to continue medication because of the side effects and was not able to continue seeing a neurologist because of financial matters. When I went to look for a doctor in my hometown they disagreed with the diagnosis and will not see me. I saw a neuropsych doctor in 2019 who said that I need to be on an MS modifying drug because of my relapsing-remitting. Why are the doctors in my hometown refusing to agree on a diagnosis of MS I don't know where to turn I was just told that I am getting clogged, and my eye and I do struggle off and on with declining memory issues in the last 2 years
Ah man, I missed the live stream as I was asleep. I am curious how you would rate the various MS medications in terms of effectiveness? I've mentioned in other videos that I am on Tecfidera. I'm curious how that rates on your effectiveness scale. It was the only pill form of DMT's that the neurologist who diagnosed me mentioned so that's pretty much why it was chosen. The neurologist who diagnosed me was not very informative or helpful when picking out a DMT.
I do like the online village that your youtube channel is creating. Having this village makes having MS less lonely and not suck as much.
#WeHaveMS
Hi Dr B
Dr. B .....Are antidepressants addictable ?
Thank you.
Best Regards
Jane. Ireland ☘️
nope not IMO
Shoot I missed it today :( If you see this Kara from Canada would love to hear more about persons who have more sensory issues like buzzing parathesia tingling numbness fatigue cognition etc vs more mobility issues... I belong to the first group and have contemplated if I have transverse myelitis or MS. Do you see patients with largely sensory symptoms only? I keep missing these so May be you might do a quick vid on this lol yup I'm asking gently much love for your dedication knowledge and passion ... Kara from Ontario! 💜 p.s. this was still great to listen to liked the fatigue piece!
Thanks for feedback and suggestion, I'll add that to my list. It's a good topic.
@@AaronBosterMD our MS clinic doesn't sound as patient centred and resourceful as Ohio health :( but maybe it's your personability... connecting with a doctor is so important!
Hi Doc, Nice to see another video. I have a question for you and other's reading this. I was diagnosed with Fibromyalgia in my twenties. I kept telling my doctor's, it is something else. I am now 58 and found a doctor that finally did a correct MRI. Thin slice rather than large slices to see the whole brain. My doc told me, according to so many lesions, I have had this sense my twenties. I have spoke to others with MS that were also told they had Fibromyalgia years ago, to later in years find they had MS. What do you think about this. Do you think we have all be mis diagnosed, or a correlation between the two.
hard to say without a proper history, exam and review of all labs and imaging.
I hear ya, Im just saying, there are too many with fibro that also have MS.
I really respect your thoughts and opinions. Is it a fair statement to say after the diagnosis of MS the end result will likely not change although by dealing with the big five, sleep, diet, exercise, DMds etc. It will make for a better ride?
I believe that we CAN CHANGE the natural course of the disease for the better through early use of highly effective DMTs, exercise as part of lifestyle, avoiding tobacco smoke and supplementing low vitamin D and attention to diet.
Lol.. I have a coffee addiction too.. LOVE MY COFFEE...
☕
Awesome!
Damn im in Oregon and I missed it. It's still not even 6am here.
Sorry Tiffany! Hope you enjoyed the replay?
I did, thank you!!!
What are your thoughts on Mavenclad / cladribine??
good topic for a video! TY Lynne!
Is an upright MRI have the same results as a tube MRI? I cant do the tube style and have used upright for my last 2 MRIs so I am hopeful the results are the same. I welcome your expertise on this. Thanks Dr. B!
upright vs supine shouldn't matter. What does matter is scanner strength. For examples 0.7T OPEN MRI scanner provide us with poor quality images!
Hi Aaron! I'm sorry I missed this live. I think you are so Awesome. Can I please ask you a question? I was wondering if the first time you have an attack and never recover fully. You still have the slurred speech, double vision, fatigue, choking when eating and more. Is it possible to ever get back to your normal self back? Especially when it's been months.
Generally speaking, deficits that remain after 6 months will likely stick around. I've seen exceptions to this rule, however, where there is recovery even up to a year in rare situations.
From NJ
I wanted to also reach out to gift boutiq...
~ I believe the topic was around the time depression was being discussed. And I'm very sorry to hear of your struggles. N I know Dr. B is so good at answering.. but due to the importance of this...I felt I must reached out.
~Furthermore, I'm sure you have your very gigantic village. And I know I'm just a stranger on this channel. But please. If u ever find your self in a bad spot and you need a friend. Or a fellow m.s. ER... Plz do not hesitate to reach out.
***In closing I feel no one should ever struggle with this. & alot of times it can even be caused by a medication. Or poly pharm. As dr. B. Calls it. :*). Depression used to be the big warning with some dmt.s...and for all the many reasons Dr b . Discussed... I know this is a hard topic to discuss as a whole ... But everyone's life is worth all the talks in the world ...
***I believe A life is un-replacable. And in turn is always worth saving and I'd sarifice every second of every day in the world to do so... If that meant I could save a life ...
Sincerely
Divine 💖🐤
Again thank you dr Arron. 🐤🐖
#WeHaveMS
As an African American I take copaxone, was diagnosed 2014 condition stable no new lesions. What do you think???
I think it's not enough info for me to comment intelligently Stacey!
@@AaronBosterMD I apologize, you mention interferon are not the best therapy for African American MS patients Copaxone is an interferon, with my current status do you think copaxone is a good therapy for me?
My grandmother in Australia says there’s a newer drug that they have been using out there called Mavenclad. She wants me to look into it. Have you heard about this drug? If so, what are your thoughts about it? How would you compare it to Lemtrada?
This is Cladribine (trade name is Mavenclad). It's likely going to be FDA approved in US in next year. It's a solid drug. I would "bracket" it's efficacy to be high mid-range. Maybe ~ that of Gilenya (that is my personal opinion, which doesn't make me right). It is a form of micro-induction therapy and most only take pills for a few days monthly for only 2 months then nothing again for YEARS. That is provocative. In that regard, it is similar to lemtrada because they both use a form of induction therapy to treat the disease.
Thank you, so much!!!!
So, just to clarify, do you believe Lemtrada’s efficacy is higher?
Does Cladribine cause brain shrinkage? I’m also assuming that Cladribine isn’t so great for trying to conceive??(Sorry for so many questions. I try not to bother you with too many, as I know you are very busy!)
Gutted I missed this live, I have a question, I appreciate you may not be able to answer this but here goes...I have always had a sustained clonus in my right ankle since diagnosis however I have recently discovered I also have the exact same in my left ankle and slight in my wrists. I haven’t had a relapse since being on tysabri so I’m confused if this is a relapse or just progression? Any thoughts dr.B
That presentation could be caused by a HOST of different things and best to bring it to the attention of your MS provider Adele!
Here you
If MRI shows no lesions What should be the next step forward? An EMG study or lumbar puncture?
From a practical standpoint, follow up MRI scans are the most valuable tool IMHO. Best to talk to your provider about what is the best plan for YOU to be followed long term.
Aaron Boster MD : Thank you for your guidance and time.
I missed it again! Still waiting for a diagnosis but I’m curious I’m having a mri on my brain and spine again, this time they are doing a 3t imaging exactly what dose that mean???
T=tesla= the unit of measurement of strength of MRI magnet. e.g. 3T much stronger than 1.5T = better "resolution" to see T2 bright lesions
Oh ok that’s sounds better! Thank you so much for taking the time and getting back to me! God bless you for all you are doing!
Hello sir it's me Rosie Walia from India, ur efforts towards awareness n concern u show towards MS patients is much much appreciable....Dr . Could u plz guide me is it possible that VEP report gets better than the previous ones....According to my old VEP report dated 19.02 2019 P 100 readings were L-VEP 146.1 ms and R-VEP 150.3 ms but when the same VEP was done at a Government hospita on 04.04.2019 reading of P 100 came out L-VEP 120 ms and R-VEP 126 ms.....Even on 17.07.2018 readings were totally different L-VEP was 135.6 ms and R-VEP was 103.8ms.... Please advise at the earliest possible.
Respected Dr. You have nt yet replied bck to my query. I hv pituitary micro adenoma measuring 6 X4 mm.... Waiting for ur advice.
I cannot diagnose or treat you over the internet in this manner Rosie. I would need to take your complete history, do a full neurological examination, review the actual VEP wave forms, review your MRI scans, likely look at an OCT, and maybe more before I could intelligently answer your question. My channel is for medical education, to energy and empower folks impacted by MS. It does NOT replace working with YOUR MS provider.
I cannot diagnose or treat you over the internet in this manner Rosie. I would need to take your complete history, do a full neurological examination, review the actual VEP wave forms, review your MRI scans, likely look at an OCT, and maybe more before I could intelligently answer your question. My channel is for medical education, to energy and empower folks impacted by MS. It does NOT replace working with YOUR MS provider.
@@AaronBosterMD Thanx Doctor
I have PPMS and I'm having DBS on Friday, I am scared
Definition of bravery: doing something despite being scared. You are brave Susans Wilber. #MSWarrior
@@AaronBosterMD Thank you I am not brave more desparate to get rid of tremor
What do you think about stepsmartfor foot drop
is this like a bioness with electric stim to help?
Do you help your patients choose medication for anxiety and depression or do you have them go through their primary physican or psychiatrist?
Just to speak from the the perspective of the folks at @OhioHealthMS, we are often comfortable with managing the first several steps through these meds before we ask for help from psychiatrists.
Can second hand smoke cause attacks too?
it is thought to increase frequency of attacks (get them more often than if you didn't smoke)
Hi I have commented about my situation.. Finally got appointment for spinal tap they tried 7 times and failed not a great experience and still no answers is this common
Ohh no! I missed it😐
Sorry we missed you Sravani! Hope you enjoyed the replay!
I heard that an eye doctor can tell if someone has MS,by looking into their eyes. My eye doctor told me I have hardened arteries,but didn't say anything about MS. Does that mean,that I don't have it?
It probably means that they didn't see anything that raised there concerns for that condition.
Why do hand(s) clench with MS?
spasticity
Living in a very stressful home make MS worse?
Howdy Abby. No body goes home at night and says, "Honey, let's get stressed out!"
I can vouch for this, as I am a carer for my nan who has dementia and severe depression. I live with my nan and having a stressful day can exacerbate my symptoms. Currently going through my second relapse in 12 mnths. I know that stress can contribute to and manifest physical symptoms in non MS people let a lone those of us living with MS. Even before MS large or prolonged exposure to stress would effect my bowels and stomach. I practise mindfullness and meditation to calm my emotions and mind when stressed and to maintain good mental health and general well being. This is only my experience.
How do I reply?
Howdy
Coffee
Aaron!! Can i ask you something!!
You just did! :)
What do you think about smoking marijuana??
I do everyday when I can because it is extremely relaxing, really the only relaxing thing I can do going through this! But I don’t think that is as bad as a cigarette? Please let me know what you think and thank you so much you are so awesome!
And I don’t feel like it is affecting my multiple sclerosis at all, but what do you think? I really feel energized after words honestly :-)
Do you know of a conference for MS sufferers?
We @OhioHealthMS are hosting a big conference for folks impacted by MS on Saturday March 2nd in Columbus Ohio!
Is it an annual event? I am at an occupational conference in Greece for my career the first part of March this year.