Answering Viewers Questions: Progression in Multiple Sclerosis
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- เผยแพร่เมื่อ 30 มิ.ย. 2024
- In this video I tackle difficult questions regarding progressive Multiple Sclerosis. If you want to better understand progression in MS, then start watching right now!
The Boster Center for Multiple Sclerosis accepts all major insurance carriers and accepts consults from around the globe, both in office and via telemedicine. www.BosterMS.com or call 614-304-3444 to schedule!
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COMMENT with your thoughts and questions below! I look forward to reading and responding!
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Video Table of Contents:
0:48 "What things Qualify as Disease Progression?"
1:25 Relapse Associated Worsening (RAW)
1:45 . Progression Independent from Relapse Activity (PIRA)
2:45 Leaking Pool Model of Multiple Sclerosis
9:04 Question of the Day
9:24 "How do you Diagnose PPMS?"
10:57 "How do you know u progressed to SPMS?"
13:09 "How can MRI not change but symptoms get worse?"
15:11 "Are there any DMT's that treat inactive MS?"
17:16 "Advice for someone with SPMS with increasing disability?"
20:15 Answer to The Question of the Day
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SHARE this video: • Answering Viewers Ques...
SHARE video on "what is progression:" • What is Progression in...
SHARE video on PPMS: • Primary Progressive Mu...
SHARE video on SPMS part 1: • SPMS Part One: Demysti...
SHARE video on SPMS part 2: • SPMS Part Two: Treatin...
SHARE playlist on progressive MS: • How Ocrevus works in M...
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NOTE: Make sure to talk to your provider before ANY treatment decision. We hope to educate, empower and energize those impacted by Multiple Sclerosis. This channel consists of a collection of formal lectures and informal video clips about MS to help education others. These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos. They are just to help educate you about the condition guys!
![Answering Viewers Questions: How To Diagnose MS [Part 1]](http://i.ytimg.com/vi/wel_iyxLWF8/mqdefault.jpg)
Thank you so much for this channel.... I’ve seen a lot of neurologists and I’ve got to be honest when I say there are few “specialists” for this disease. I’m getting more info from you than from anyone else. Thank you thank you xoxo
ANOTHER GREAT VIDEO DOC...
The best and most informative videos on MS on TH-cam...
Being newly diagnosed I've learned alot from you. I also tell my family and friends to check your channel out so they can better understand MS.
Greatly appreciated Dr.
Thank you very much.
TY! #WeHaveMS
Good Morning Dr. B! My question is about the EDSS method. Isn’t it time for an updated method? This one doesn’t seem to take into account the disability from fatigue or cognitive issues.
I just wanted to say that I am so grateful for these videos. My neurologist is terrific, but you are excellent at explaining theory. Just thanks so much!
The pool is the best explanation I've ever seen to explain functional reserve! Thanks!
Thanks. That is the creation of Dr. Stephen Krieger at Mount Sinai hospital in NYC.
Dr. B I'm loving the new intro. Your reaction to it makes me smile every morning. Thank you for starting my day off right!! I need a ringtone, lol.
I prefer the leaky boat model - we are losing water due to holes (lesions) as we patch and bail by taking our meds, exercising and eating a proper diet, never stopping.
Thanks for yet another great video!
Great video again. You give me hope with your explanation.
As always, thanks for another amazing and informative video! 👍
Thank you for the video! Had a good chuckle about your coffee break.
The pool analogy is great, best way I have had explained. Also the disability scale and the outcome over the coming years... colors... etc. Thank you. I wish that is shown to you at your first diagnosis, might give people hope that ‘one can be their best self’ living with this disease.
Thanks again! Wish you all the best with your new practice!
Hi Dr B, excellent and informative video, thank you! I am so grateful for you and your channel 😊
L W You are very welcome! I’m delighted you find the videos helpful!
Thank you for video on disease progression. It’s a scary topic for us all. Doug coffee in hand from lyndhurst.
you're very welcome Doug!
Great video as always 💕😊
Great video Dr B! Recently I've been trying to tell people about the functional reserve, this video makes it easier to understand I will be showing this to family and friends!
Wonderful!
No questions. You've made everything crystal clear. Feeling enlightened and empowered. Thanks! Happy Chanukah from Jerusalem. 💪 🕎🔥
Happy Chanukah!
Excellent, I am a consultant general neurologist and I following your videos for up dating knowledge as well as your immense experience.
Meant to write, you are a blessing
Thank you very much! So interesting and you made it understandable.
TY Laurie!
Thank you for the awesome and highly informative video as always. I wished you lived in Pensacola, Florida.
Thank you for information Dr. Boster. [Question] Why is the same dosing used for both for example 50 kg patient and 90 kg patient (except Mavenclad),
does body weight not matter in MS medications?
I have the same question. I'm on interferon and my weight is 47kg..
I suffer more side effects that some people that I know who are in the same drug but weights 70 kg or more..
I discovered I was misdiagnosed as having MS. I have Leukodystrophy. I am not sure which type I have, I’m too old to have the most common types. I next see my neurologist in August. I see Dr. Pace in Owasso, Michigan.
Another great one Dr B. Perhaps you could do one on that chart you shared. It interested me but not sure I fully understood it. Thanks from 🇬🇧
TY for suggestion. Actually, my very 1st video on TH-cam was about the Multiple Sclerosis Severity Score (MSSS) which is very very similar to the chart I showed in this video (Patient Determined Disease Step or PDDS). If you want to see some REALLY BAD videography (gulp) check out that video LOL! th-cam.com/video/Ma-XSZUYjoc/w-d-xo.html
Hi Dr Boster. I have a favor to ask. Your intro and coffee break music are 200% louder than your voice. This means that my ears are blasted suddenly, as I need to have the volume up high to fear your voice. Could you reduce the volume gap by lowering the levels in the music? My ears and headphones would be forever grateful.
This was a very helpful lecture. It answered many questions I’ve had since diagnosis and gives me a good framework for discussions with my neurologist. As always, I am so grateful that you dedicate so much time in your busy life to educate the world about MS. your videos have also helped my spouse understand things better and has reduced his fear as well.
Jephhh, I will start to make this change with my next recorded video. I have one or two already in the cue, so please bear with me.
The PDSS was really informative. I had never seen it before. Could you do a video where you discuss it in more detail? Thanks!
yes Ma'am!
How can you not comment on that intro! 🤟👏👏 lol i love it
Thank you!
Dr Boster, where could a person get a copy of the chart you referenced in todays video relating to MS progression. All you videos are excellent, however today you addressed a topic that is on every MS patients mind.
Do a google images search for Patient Determined Disease Step (PDDS) and you'll be able to find it!
Hello Dr Boster, I always love your videos, they are really informative, not all of us have the privilege of such eloquent neurologists!
I know you like feedback and I wanted to let you know that I personally love your new intro music, but I’m not so happy with the presentation on this particular video as it makes me feel dizzy (which I do quite a lot anyway) - hope you don’t mind me saying this!
Oh no! Can you help me understand what contributed to making you feel dizzy?
Hi! yes! It’s quite funny but when the screen rotates with your face on it, somehow I feel really giddy, perhaps it’s just me, I don’t mean to be rude.
Excellent video as always! Thank you for sharing your knowledge!
Thank you for this video! Question - Is there ever an appropriate time to stop disease modifying therapy? In your opinion, what is the best available DMT to slow progression?
I MISSED YOU DR.BOSTON
Dr. Boster, I’m starting to see some of these stalagmites breach my surface. I’m on, Tysabri. Is it to be expected I will still see activity or should I be completely symptom free?
Hi thank you for your videos. What DMT seems to be the best for delaying MS progression in your opinion ?
Dr. B - I love yourvideos. Thank you.
Question - can you have symptoms or worsening of symptoms without a change on MRI (my MRIs have bern 3.0 tesla). I understand you can have MRI changes without identifiable symptoms but I'm wondering about the opposite. Thank you.
yes you certainly can have this. The MRI (even excellent protocol on 3T scanners) do not capture all of MS disease pathology.
I could not see the PDSS on my iPad and I cannot locate the same scale you were discussing. Do you have a link to this scale so I can follow along? Thank you again for posting these videos.
n.neurology.org/content/80/11/1018/tab-figures-data
Thank you so much.
Dr.Boster my question is, can you flip flop on ms levels? For several years I was told I had spms then my new neuro said that I have rrms. Thanks for your help
Tiffany Aguilar not enough info to be able to comment Tiffany, sorry
Hi Aaron, the stalactite analogy really helps but leaves me with a concern for the future. I'm 49, was dx at 25 and live in the UK. My MRI shows lots of outer brain lesions (in addition to the deeper lesions). My daily functioning is ok and I'm relatively mobile. My question is, as time goes on are the symptoms I've experienced in the past - most of which have now subsided - likely to resurface. I'm doing all I can to maintain my reserve, but I stopped DMTs and am on the cusp of moving into secondary progressive. DMTs in SPMS is more tricky plus I had a malignancy in 2014 ... how should I best protect my reserve? What might I expect as the reserve drops?
Hi Dr. I'm 19yrs old and newly diagnosed with RRMS and I'm on dimethyl fumarate so my question is will I get any sort of disability in upcoming years as doctors were saying I have a mild type of ms
If you have PPMS from a young age (very early 20’s) is the progression worse as you are living with it for longer and will you end up bed bound?
Dr. I only have 3 lesion in my brain .. largest one disappeared and NO symptoms i was only Dx 2 years now I'm on tecfidera.. I saw a natural dr who suggested I ased if I could have guillain barre syndrome vs MS .. do you think doing this would be a waste of time
Samantha Collins is need to take you full history, examine you, review your MRI scans and EMG studies to sort it out
I have ppms and very much hate drugs but I receive ocrevus treatments and am interested in trying drugs to help with spasticity and fatigue, do u generally recommend them? Are any of them somewhat effective?
Willl everyone change from RRMS TO PPMS or SPMS eventually or can you stay RRMS indefinite for life? Thanks Dr. B!
Hello Dr. Waiting dx at 61 yrs old very scared of what's ahead . Is there meds available for my age group ?
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I really wish that I lived in Ohio! I have one doctor that did a brain MRI on me and he said get to a neurologist fast .A neurologist that says “Why do you want to have MS?” Talk about depressed!
My question is about gadolinium. The second time that it was given to me to enhance an MRI, I developed the worst migraine that I have ever had within a minute or two. Since then, I won’t let a radiologist use it. Now with all the doctors confusing me so much, I think that I have to use it. Is there some way to use gadolinium and not have a really bad reaction to it?
This would actually be a really good topic for a Dr. Boster video. I'm allergic to gad, so my neuro tried to pretreat with Benadryl and steroids. Didn't work for me, which seemed to amaze all the radiology technicians in the hospital ¯\_(ツ)_/¯ . My current neuro doesn't order it for routine MRIs anymore; not even for his patients who can tolerate it. Nonetheless, I still have nurses in radiology try to administer it from time to time...because they're just used to doing that I guess.
Ah! That may be why my neuro doesn’t routinely order gad! My last two MRIs were in 3T machines.
Laura Carlson, the 3T MRI that I had was in Poulsbo, WA just outside Seattle, WA. They were one of the first imaging centers on the West Coast to have the machine. It is 3 minutes from my home! Who would have guessed?!
how about the more i do in a day the worse i feel...dizzy lose coordinstion.
On my first MRI my neurologist said it was very obvious i had MS...does this mean that before my symptoms became noticeable (14 yrs old), i was having active demyelination prior and didn’t know?? Or did all my lesions pop up at once??
What treatment is available for MS related vertigo?
Back awhile ago, you talked about pts who fizzle out during mth 5 on Ocrevus. OMGoodness...that is ME! But, I thought you said it was in the pkging. I can't find written info. My Dr is opposed & I have orig MCR w/ a supplement. In order to get it paid for, I need some source in writing. HELP, please! Thx!
1. The FDA label specifies the drug is to be administered every 5-6 months.
2. There was a presentation at the AAN this past year that shared data on "wearing off" effect in patients with a higher BMI.
Reshare
Great video as always! I have two questions if I may be so bold 😆
1. If spasticity is sometimes very helpful in keeping you walking with a weak leg because it helps support it, how do you determine if treating the spasticity would be helpful or harmful to walking?
2. Why aren’t there more neurologists like you?!
hi, is there a name for that finger tapping test?
you'll laugh. It's called "finger tapping". seriously!