Multiple Sclerosis Vlog: Calculate your Own Multiple Sclerosis Prognosis
Вставка
- Опубліковано 29 вер 2024
- In this video, I teach you how to calculate your own personal Multiple Sclerosis prognosis, using a simple chart! Learn how to use the Patient Determined Disease Step. Learn how MS Neurologists use the EDSS and Multiple Sclerosis Severity Score. Start watching and calculate your prognosis right now!
The Boster Center for Multiple Sclerosis accepts new consultations and is actively enrolling several MS Clinical trials! www.BosterMS.com or call 614-304-3444 to schedule!
**********************************************************
COMMENT with your thoughts and questions below! I look forward to reading and responding!
**********************************************************
SHARE this video: • Multiple Sclerosis Vlo...
***********************************************************
FOLLOW on Twitter: / aaronbostermd
FRIEND on Facebook: / aaronbostermd
SUBSCRIBE on UA-cam: / aaronbostermd
VISIT us on the web: BosterMS.com/
***********************************************************
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 (and in this case calculate your prognosis) 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!
Dr B (or MS Professor), this is great information! I have never heard about this or that it even exists (until now). To me, knowing that the neurologist is calculating the EDSS, allows a more informed & smarter conversation with them. As always, many thanks!
Thanks for the positive feedback Brad! My goal is to energy and education and to EMPOWER! #StrongerTogether
After 15 years since diagnosis and 35 years since symptom onset, that is the FIRST time anyone has explained those charts with me, despite me curiously asking. Thank you.
Thank you for these videos. You answer questions that doctors and neurologists don't want or don't care to. I've no idea why.
I am curious to know (if you'd be so kind as to share), but remembering what age and type of onset, would you say that this progression chart has proved to be true in your case? That is, 35 years in, do you feel that the chart accurately represents your personal journey to date?
Fascinating! I’ve never seen this colorful prognostic table. The advances that have been made in the last 20 years (since my symptoms started) have truly been amazing. Thank you for sharing!
Dr boster i love 💘 that you are on UA-cam. I have rrms for 22 years. Im 43 years old. I am learning a lot about my ms. Im a warrior
Keep it up
Thank you for this. Between this and my friend who is a physical therapist I should be able to stay where I’m at. I need a cane on bad days or if I’m going to be walking all day. I use one if I walk for more then an hour or so nonstop.
Good Info. - Thank you.
When this should be assest? I was diagnosed few weeks ago after MRi scan and due to the covid moat of conversations are through the phone. But for the very diagnosis i was invitaed to actually talk face to face... As i read alot abouy MS my meeting lasted 5 mins as i had no questions... Shouldn't neuro to any examination? I really was there just 5 mins so he could tell me ask if i agree and if i have question. Is this done later on when treatment is starting?
Dr Boster, how can MS patients continue on with a normal life? Disability and Medicaid are so restrictive I feel like I’m just staring at the wall all day. I want to work and feel useful but treatment is so expensive.
You have to adapt and continue living
Is the PDSS online?
Found it!!
I was not able to walk in the beginning all last month. now after my own physical therapy I’m walking
I to am doing my own physeo, there's even a vid on yoga and MS,
MS warrior
It’s true. I’ve changed my path from the MS gym. Still have other major issues but due to the emphasis on gait, it blurs the results.
Dr B has some videos as well with exercises. I also found some on UA-cam. Sitting and standing back up has been helpful. Also, standing with one foot elevated by an inch or two. Just enough to force your brain to try to balance your body. Don’t do alone if you have severe balance issues. Also I did one where you put your feet together as close as possible for you and try not to fall. Raise the difficulty by closing your eyes and crossing your arms on your chest like a mummy. It is crazy difficult. You may fall down.
To be clear.. my problems are primarily with balance, and a significant imbalance in strength across my body. Everyone may be dealing with different causes for their walking problems.
Year 7, 0 edss
Any Therapy? My Edds was 0 until year 8. then 1.5. now 1 I guess. Urs?
Knowing this makes me feel MUCH more fortunate than most. I'm still nearly fully functional at 12+ years since my symptoms. I still work full time as an RN 11 years after my diagnosis. I honestly contribute getting diagnosed & placed on meds quickly to my current level of functioning. It does seem to make a difference to be heard and get on meds ASAP.
What was your dmt journey
I am so grateful for the information you share. I wish EVERY neurologist was as willing to share and educate their patients as you. That might help us, help them, do the best possible job.
Why is walking the main determining factor for disability?
this is a topic for a video, thank you! spoiler alert: it's for the wrong reasons!
This always bothered me, too.
@@AaronBosterMD very much looking forward to that video!
Agreed, I can't wait for this video, it has always frustrated me that your walking ability is treated as the golden indicator of a person's disability. Your videos are always so eye opening, and very well explained!! Thank you 🙂
Thanks Dr. B! What a great way to start my day. My prognosis looks good on both of those charts for physical disability. My question is how about cognitive disability and fatigue. Is there a way to chart these and have an indication of how they will progress?
Yes, I would love to know this too. My first neuro warned that people low on physical disability might be higher for cognitive disability.
I think your question is an important one. The EDSS does not tell all since you are right it does not factor in other types of disability in well. I have a friend with MS who physically isn't too bad but on the cognitive front is not doing well at all. It also doesn't factor in vision or other unusual symptoms.
Good question. I have serious cognitive disability and big time fatigue. It seems like this should be factored into neurological disability.
Most excellent observation and the content of a follow up video! This chart, and the EDSS have many limitations (hence my preference in clinical practice to use functional testing to monitor our patients)
@@AaronBosterMD thanks! You’re the best!
Dr. B, Why are disability scales bases at walking ability?! I understand cost of cognition testing & ability to easily verify walking ability. Are there any pushes for newer MS evaluation methods? Thanks.
I've inquired about cognition tests too with my neurologist, but to no avail. I also understand the ease of evaluating motor function compared to cognitive abilities especially when each patient's baseline is different and may not be well documented, but it seems to me that we should be trying to move in this direction to better gauge true changes in every patient.
My biggest issue is my cognitive decline. Is there a test that takes this into consideration?
I have the same question, thank you for asking.
Me too.
This is just AWESOME! Why hasn't someone been able to make an individual's MS disability into "normal language" rather than neurologist's language before this? This was SO helpful to me and I imagine others. I do have a question. I am able to walk 25 ft. in 25 seconds without assistance, but I am more comfortable using a rollator when I'm out and about. I have such a fear of falling, I will avoid any change of this happening. So, what is my PDDS? I'm thinking a 5 or a 6.
Thanks so much for this video! I'm wondering how does this apply to RRMS - at year 0 I was blind in one eye for a month which might put me at a 2, then fully recovered and didn't have another relapse until year 7 and that was mild sensory stuff only which I also fully recovered from. Now I'm a 0 at year 12 - does that mean I would likely stay on the dark blue normal trajectory? Thanks!
I was so hoping there would be a response to this.
Wow this is so great to know! This has relieved my anxiety. I had one attack about 2 years ago that put me at a 2, recovered in 6 months, and haven’t had symptoms since. I just started a DMT. I suppose my prognosis should be good. The unknown is scary!
Is it possible to have a link to the chart you used? Through careful detective work, I have shifted my prognosis trajectory colour. But your head is in the way lol. I would love to have a copy to print and outline what I did for my team. (Mavenclad but also antivirals being key, as well as turning around insulin resistance and fatty liver). If possible, thank you!
Do people tend to stay in the same color through the years in this PDDS table too?
I appreciate you making this video! My doc basically dismissed me due to my age, saying I will not progress at all due to my age.\, and only wants to see me once a year (I'm 53). I was diagnosed in 2016. Since then (last year) I have gone from early cane to late cane (and sometimes in between). I have been worried lately since I am progressing (even though I am old) but this chart gives me hope that I will only (at worst case) need support - which I'm not quite sure what that means but it does mean NO WHEEL CHAIR OR BEING BED RIDDEN! Thanks so much for this!
Thank you for the information Dr. B. I have one question, you diagnosed my wife before you left to start your new clinic in Columbus and she wants to be able to switch back to being cared by you as the current doctor she has, she feels like she is just a number. How would we go about getting back under your care? You made her, i and my children feel at ease and she really needs that back.
You are an angel to those of us needing more info. Thank you.
Happy Monday! Thanks for sharing! You are so helpful and the best! # mswarrior
I have an important question: should the EDSS score be given during a relapse (in case of RRMS) or during remission? Because my doctor calculated EDSS = 4 when I was relapsing but when I'm not relapsing I have no symptoms at all, except if it's super hot outside
I'm totally new here, but wouldn't it make sense to assess you when you're in remission?
I love that you make this illness make sense. Wish I was in your clinic. So these videos are great. Thank you 👍
YOUR ALL MS WARRIORS
So my PDSS would be 0 while my neurologist put 1 because I have brisk reflexes and shaky hands and knees... when I am there for the exam... I actually learned recently that I do have anxiety especially when it comes to my health and during exams, medical exams included xD She said it could also be normal in young anxious people to have brisk reflexes and I told her the shaking only appears when I am nervous.
But anyway, cool tool! That means for me without DMTs I would progress to a score of 3 by the age of 55 and with DMTs started super early I am indeed very likely to be very fine.
Is our edss being measured at the peak of attack and not the time in between? Thank you for the information!
That's something i think about quite a bit too, actually. I feel like its EDSS at the peak of the attack, especially the one that gets you diagnosed, but.... It's a great question. Would love to hear more about this in general, not even just how it relates to this chart. How fo neurologists think of EDSS when a patient improves quite a bit after that initial attack? Does their EDSS stay the same?
Another great video this morning, I had no idea these charts existed, what a great tool to better understand my MS.
Just to state, RIP David Lander. I met him in an Avonex meeting and he was such a nice guy and was very animated.
Based on my physical symptoms I would have have to say ms started for me 8 to 10 years ago. I appreciate your videos and you're more often than not spot on and you definitely were here. Thankyou again.
I needed to hear/see this today! Two years symptom onset, level 3 disability. PPMS. I’ve been on Ocrevus for 3 full doses and am maintaining very well... Today was a little rougher...woke up with 2 spoons...I needed this encouragement and appreciate you Dr Boster so much!!!
Great video Dr B. I was diagnosed after I had my first MS attack that put me in the hospital.
Could we ask our neurologist what our Edss is?
Of course
Hello..After 11 years of MS I have an EDSS of 0(zero)..I only had one relapse in 2015 with complete remission.In theory I should have a favorable prognosis.What to expect from the future?
With the PDDS I am a 5 in year 2 of diagnosis. Around the house I normally hold on to thinggs have balance issues. Away from the home like quick erands. I use my cane, walker, or mobility dog... Depending on the day. When I am expencted to walk a comsiderable amount I bring my wheelchair. Thank you for explaining this information. I have a neuro appointment tomorrow since i am one month into Kesimpta now i have some points of discussion. We have never really talked about my disability number, however I was approved for SSDI within 3 mo of appplying at the age of 32. It all feels so blah like a whirlwind. To be running miles easily 3 yr ago and working as a LEO to barely making it unassisted.
If physical therapy improves a symptom, such as gait, does that improve or change the disability score?
Excellent video, very informative. Thank you Dr Boster
My pleasure!
My EDSS and disabilities were much much higher my first couple years, now incontinence, some cognitive stuff and fatigue are my main problems. Fatigue is the worst for sure. Is that a weird trajectory that it got better? I used a walker after my first relapse and then used a cane for a year or two after and now I never need a device to ambulate
Fascinating, I do like the holistic nature of things
great info, Thanks Aaron you are a star.
Thank you kindly!
That was absolutely excellent. It just so happens that I’ll be talking to my neurologist today. I haven’t had a real Neuro exam in a year, as all my appointments have been virtual due to Covid. I walked around all over the place for 11 years with a walker; after two major relapses after my medication was changed; I learned how to walk again, but I have to get a motorized chair or scooter to get around in my house. I can’t go up stairs, and I can’t get up if I fall. I can’t drive either. It’s a problem, and I’d appreciate any advice. Anyway, I’m going to pull a number out of that chart you gave us to spin to my doctor. And you’re right about the color. I’m a purple girl. Strangely enough purple’s my favorite color. And I’ve seen that patient scale...on Th norcom study...which I’ve been doing for 15 years.
My walking seems to go up and down, and at the moment I’m doing really good. But I’m dizzy, and my balance is a bit all over. The exercises and physio, seems to help, but the dizziness it’s not helping 😔
Thank you very much Doctor Aaron for all your previous videos! I feel way more knowledgeable thanks to you! I got diagnosed last year at level 3 EDSS by doctors. I'm however unsure how I should count the years: from my first attack (2021) or when the tiredness started (2018) please? Many thanks for your help and greetings from France!
Hola kind sir. Starting the day hearing your voice brightens my day. Thank you for all of your help lately! We got this! 😊
Heck ya we got this! #StrongerTogether!
you are an MS warrior
I feel like the happiest person on earth after watching this ahaha! Thanks a lot 🤗 from Italy 🇮🇹
prego!
I feel a little lucky now. I am not on DMT yet.
I have had MS symptoms for 8 Years, where the docters didn’t believe me.
My edss is 1.5.
I have 13 lesions in my brain and spinalcord. 29 Years Old.
Aaron how do I get in contact with you ? I have not been given a disability test in years I literally go in a room get told to say how I fell and sent out again . I could really do with some advice . Thanks
Dr. B, thank you for providing indept information about MS. As a retired veteran, it is vital important to get the word out. Sometimes, the VA has limited resources to fully get into the weeds of MS. GOD bless you and keep it coming!
TY for your service Garvis Leak
Thanks a bunch for this Dr
Guess, think my treatment is doing OK. In the past 18 years, approx start of tryst with MS - I have progressed from Mild disability (Unable to walk in straight line with eyes closed) to Needing a stick to walk (Walker in early mornings & night bathroom visits)
FWIW, I am less anxious to know, where am I and what can I reasonably expect - Thanks once again
I wish I could hit ur like more than once, MS warrior
Where can I donwload that graph?
Is there any way to see the graph? Please don’t only like my comment...
Would you please write out the names of the 2 charts so I can Google them?
Right? I ended up taking screenshots while in full screen. Resolution is fuzzy but still readable
The only issue I have with these scales is that arms & hands are left out as well as cognition. My own EDSS has gone Down drastically, ie I can walk well unaided again. But at the same time, my arms and hands haven’t. I know many doctors use the 9 hole peg test and others don’t. Is this factored in somewhere? Have I missed something?
Also what about vision? This can also be the cause of disability. I will most likely need a cane not for walking, but because my vision is deteriorating more quickly.
It seems that these things are totally left out of the equation.
As always Thank You for your videos. These help us all!! 🤗❤️
Hi Dr Boster. My EDDS score has improved from 12 years ago and it was definitely something that helped me to gauge my physical improvement
DrB, I can't find the PDDS scale, only reviews of it and EDSS scale. Is there a link to download the PDDS scale ? I can't see it clearly from your video. Thanks.
Heya Dr. B! Always a pleasure! Where can I get the PDSS scale to see where I sit? And, for symptom onset, would I count the mystery symptoms that I’ve felt for 40+ years (say, sexual dysfunction or depression ) or just since 2010 when I first started losing my arms?
Hi Doctor B! Can you please do a whole detailed segment about AHSCT? I know there are some people in Australia who are interested in it, there is treatment available In Russia,Mexico and India which costs some money. I am thinking of going to India next year to do it once COVID is over or once a vaccine is available.
I’m curious if you can tell difference between EDS. and MS
Right now symptoms started at age 16 diagnosis at 33. I am 35 now don't have any problems only sometimes when I get stressed but those aren't bad only some shaking hands and legs and balance but for the most part I am not having any symptoms
I think I just sound like a broken record at this point, but here it is:
Thank you Dr. Boster for another video! Awesome information and easy to use tools! Also just at a quick glance and counting, in my case it's very accurate.
My pleasure!
Remember, the chart was developed for people NOT on a DMT!
Hi doctor B maybe I have missed your video on this but just wanted to ask the question. So with the covid vaccine coming out in the near months I just wanted to you your thoughts on people with MS taking it and what could be the side effects of someone with ms and on modified medication. Have they run test on this in there trials of test groups?
My neurologist doesn't do any tests for my ms. I've watched multiple videos of yours and you always have different test you do with your ms patients. Should I request these tests so my neurologist does them? Or is it not that important? Ive had ms symptoms since I was 7 but just got dianogesed at age 30 so I'm curious listening to this how much damage is done for having it so long. So what is you opinion on this should I request these test?
Thank you so much for the information. This seems to be an easy enough check. Definitely makes me more confident in my long term prognosis. Honestly, I am still so happy that I can get one foot in front of the other for my exams now. It was previously impossible to get the foot in front of the other foot for the tightrope exam. Lemtrada somehow helped. Doesn’t make sense to me, but it helped decrease my disability. I have to share this with you because you taught me about Lemtrada. Thank you. It is not without its toll, but I do believe it has been worth the personal costs.
Dr. B, how can I see the full graph for patients to use? That last graph didn’t show the top. I have an idea of where I fall, but curiosity begs me ask if this is available online somewhere.
Kelly, Thank you for sharing that with me, that is fantastically wonderful! Congratulations!
...If one were to google image searches for words such as MSSS and PDDS and EDSS one would be amazed at what might present itself on the interwebs...
A particularly great video! I look forward to the follow-up re function!! And you say we know how long we’ve had MS. That makes me chuckle! Was it the time I frequently fell and blamed my shoes, or was it a few years later when my arm went numb and I blamed my bike?! Haha!!! Cheers and thank you!
Dude!thank ya Doctor B,that was a really badass video.Really stellar info. looking now on your website for trials ad I wanna e mail you,or even the center ad ask a few queries. Thanks a to Doc,that was really nice
Glad it was helpful!
This video "Like usual" is awesome!!
Thank You and hope you have a great week 😊
Thank you Dr. B! It explained my hour long appointment with my neurologist yesterday who retraced my history of symptoms before I was diagnosed.
As always, thank you for this information! I’d love to talk more about it in clinic next visit! Happy Holidays!
Very interesting and informative video, thank you doc!
Glad it was helpful!
Thanks Dr. Boster. Maybe we can go over these carts a little closer at my next appointment. Very informative as always.
That's good if this chart is correct I will still be good in 30 years
Reviewing and recommending
At least 30 years after my first symptoms, I can still easily walk 300 feet without a cane, in my neurologists office. However, and this is a BIG however, I cannot do that in the real world. Under low light conditions, in an environment I'm not familiar with, or isn't totally flat, when I'm super tired, when I first wake up in the morning, if there's a lot of activity moving around me, in a store with high shelves and a lot of things surrounding me. So while I do need a cane, I hardly ever need it in my doctor's office.
Thanks Aaron, your brain logo has inspired my MCC M.S club patch, I,m giving myself a year to get things going. as soon as the patches are made will send you a couple, you being a founder member, of the MCC and the Big plan, to bringing awareness to M.S mental health, Depression, a number of topics witch have impacted or moved me over the years, I'm newly diagnosed, with M.S sadly not a stranger to the condition. I'll keep you posted as to my progress love from Cornwall England
What is MCC MS club patch ?
Excellent education Doc. The EEDS is a great tool - thank you for explaining it to everyone ❤️
EDSS🤦♀️😂
I knew what you meant, no worries Desire!
Glad it was helpful!
Thank you sir!!! Myself and so many others have suffered for many years and not been diagnosed!!! I know of two people that went misdiagnosed for years before the Doctor told them it was MS. I am also in the same boat. Life is so painful. My spinal cord is so inflamed. I pray that you all can find a quicker way to diagnose MS!
I cannot afford the MRI. Meanwhile I started having scary mental fatigue, MS like bladder issues, using rollator, bad balance, stiffness, sore eyes, light & noise sensitive dizziness, tinnitus. Still tryin to work. I am a train wreck. My feet & knees are arthritic. Too much goin on. I am worried I'm gonna have a mental breakdown. I am so stressed.
So as I understand the longer you have invisible (in symptomatic way) disease the better.
This was a great video. Helps me to know where I sense Im headed in the future with MS. Thank you Dr B!
Thanks for an excellent video!
Glad you liked it!
Interesting info. 👍🏻✌🏻 ~John
Thanks for this explanation! Using EDSS at year 0, I was at 7.5. After physiotherapy, the best I've been is at 4.0 and never lower ever since. It will go up again, then go down a bit. I know about my number from my follow ups with my specialist. The 2nd chart is interesting, something I can keep in mind!
Thanks for sharing!
Dr. Boster, this video was HANDS DOWN your BEST VIDEO that you have EVER PRODUCED!!!
Thank You SO Much for providing this information and I Can Not Wait for my tele-visit on Thursday so that I can speak to my Neurologist about my MS progression!
YOU are Awesome!!!
Keep On Keepin’ On!!!
Thanks again
Ken
Wow, thank you!
I'm curious how to get in to you? I was told I have ppms they believe as I have all symptoms but only a few white lesions on brain and none on the spine. My walking is horrible especially trying do yard work I got bricks I tote lol my short term memory bad they are sending me to get the testing done. I'm so clumsy I drop everything and my right hand/fingers dont do what I tell it to and no strength... does any of this sound right I'm so not understanding any of this especially ppms I'm 44 and feel like im 80
You can reach us by calling 1-614-304-3444 or on the web at BosterMS.com
one of the best MS videos I've seen👏
WOW!! Thanks again for that info ☺️!!!
You bet!
Link to the last chart pls Dr B!!
Found it online at research gate.
This helped a lot to understand my position with MS and removed some heavy clouds... Thank you Dr B for sharing your work and knowledge!
Glad it was helpful!
Thank you in advance.
THANK YOU 😊
You're welcome 😊
Was already disabled for many years before my MS diagnosis so I find this all pretty confusing sometimes
Was getting regular MRIs since 2008. No lesions present until 2016. My EDSS was already a 6 at diagnosis.
Appreciate the time you put in to educate. 👍Dr. B
Thank you
Hi Dr. B
Thanks for this great video. I had an EDSS score of 3 when my neurologist suspected I have Relapsing MS (I saw the symptoms for a year and a half).
Got Ocrevus six months ago, and I scored 1 on my most recent neurologist visit. I am scheduled my next Ocrevus shot in two weeks
great video, Dr. B!
Great video, super Informative thank you so much x
You are so welcome!
Thank you for this. Very helpful and applicable!
You're very welcome!
I live in Columbus and I see Dr. Eubank. I think he works at the hospital you used to work out of (OhioHealth) prior to opening your center. I lost all arm function in my left arm and hand. 100% of it. That is how I got diagnosed and they gave me Plasmapheresis which got me back to about 70-80% function. They put me on Vumerity, and that was 6 months ago. my 6 month MRI is on February 1st. My question, this self scale only really goes off of walking but almost 90% of my lesions are in the brain. 16 in the brain and like 1 or 2 in spine. I have had MS for about 10 years. I am a programmer who can hardly type. I am worried my doctor isn't hearing my pleas for help about switching to a stronger medicine, like Ocrevus or something. Are my worries valid? Should they have had me wait like 3 months for an MRI before considering switching? I feel since I needed Plasmapheresis already and I'm worsening it'll be too late......