Multiple Sclerosis Vlog: Calculate your Own Multiple Sclerosis Prognosis
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- Опубликовано: 6 дек 2020
- 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!
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COMMENT with your thoughts and questions below! I look forward to reading and responding!
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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 (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?
Year 7, 0 edss
Any Therapy? My Edds was 0 until year 8. then 1.5. now 1 I guess. Urs?
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.
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 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 RUclips. 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.
I love that you make this illness make sense. Wish I was in your clinic. So these videos are great. Thank you 👍
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!
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 🙂
I stumbled on this doctor when I searched for ocrevus to see what patients were saying. I had a new pretty intense attack in September and 12 years of no attacks in campath trial the drug reached its limit for me and Dr that oversaw trial became my neurologist. He wanted me on ocrevus instead of doing one last dose of lemtrada. Watching all these videos all the time has me concerned about my situation even more and the future more uncertain
Just to state, RIP David Lander. I met him in an Avonex meeting and he was such a nice guy and was very animated.
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!
You are an angel to those of us needing more info. Thank you.
Another great video this morning, I had no idea these charts existed, what a great tool to better understand my MS.
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.
Great video Dr B. I was diagnosed after I had my first MS attack that put me in the hospital.
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! Thank you for showing and explaining the charts. It makes sense and helps me understand things better.
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
This video is amazing. Thank you
Thank you Dr. B! It explained my hour long appointment with my neurologist yesterday who retraced my history of symptoms before I was diagnosed.
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.
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!
This video "Like usual" is awesome!!
Thank You and hope you have a great week 😊
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!!!
one of the best MS videos I've seen👏
This was a great video. Helps me to know where I sense Im headed in the future with MS. Thank you Dr B!
This is wonderful information! Thank you for providing it!
Awesome Doctor B. I hope one day soon I can have an appointment with you. I appreciate your kindness and your great understanding of the “bad guy” MS. I had one symptom begin 14 yrs prior to diagnosis. I have in real time 6 not fun symptoms one scary symptom of hearing super scary auditory hallucinations at night. I’m only 44.
Thank-you so much for doing this video.
As always, thank you for this information! I’d love to talk more about it in clinic next visit! Happy Holidays!
Thanks Dr. Boster. Maybe we can go over these carts a little closer at my next appointment. Very informative as always.
This is so great Ty!
Fascinating! Thank you❤
YOUR ALL MS WARRIORS
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!
Thank you so much DR
What an exceptional channel !
Appreciate the time you put in to educate. 👍Dr. B
great video, Dr. B!
Thank you for this information
Hey imma check this with my neurologist but this gives me hella confidence
I always look forward to your videos. This one really made me think. Can you have more symptoms but NOT have anymore lesions?
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.
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.
Thank you in advance.
Happy Monday! Thanks for sharing! You are so helpful and the best! # mswarrior
Thank you
I feel like the happiest person on earth after watching this ahaha! Thanks a lot 🤗 from Italy 🇮🇹
prego!
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
Thank you for this. Very helpful and applicable!
You're very welcome!
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. 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!
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.
Excellent video, very informative. Thank you Dr Boster
My pleasure!
Fascinating, I do like the holistic nature of things
great info, Thanks Aaron you are a star.
Thank you kindly!
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!
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
Great video, super Informative thank you so much x
You are so welcome!
WOW!! Thanks again for that info ☺️!!!
You bet!
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.
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!
Thanks for an excellent video!
Glad you liked it!
Good Info. - Thank you.
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 ?
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!
THANK YOU 😊
You're welcome 😊
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?
Very interesting and informative video, thank you doc!
Glad it was helpful!
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.
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.
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!
Hello Doc, thanks for the great explanation. I switch from wall-to-wall in house to crutches for short distances under 100m to wheelchair above that. How do I determine my PDDS?
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.
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?
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!
Reviewing and recommending
I really appreciate this vid cause the thing that bothers me the most is the unknown and how bad it’ll get. I’m definitely gonna ask my neurologist my EDSS score next time I see her.
Very helpful & hopeful.
So glad!
Dr boster i love 💘 that you are on RUclips. I have rrms for 22 years. Im 43 years old. I am learning a lot about my ms. Im a warrior
Keep it up
This is brilliant, Boster! While my numbers aren't so great, i can say that this is incredibly accurate. The wheelchair doesnt scare me.. Dont get me wrong - i have lost and regained mobility multiple times *blessed* it's the autonomic function that is always on the back of my mind i.e. blood pressure being super low, so weak i cant speak without it exhausting me, my mind etc.. At least im not sleep walking anymore... My neuro laughed at me when i stated i had started sleepwalking.. It was sketch.. But at least i always had a funny story to wake up to from my then boyfriend.
Side note: do not EVER wake up someone that's sleepwalking.. I assure you it will scare the poop out of them and YOU! :)
Thanks for being so awesome, Dr. B!
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
I was given a 3.5 EDSS score after 2 months - fingers crossed my Kesimpta helps :D
Interesting info. 👍🏻✌🏻 ~John
DR. B
How would you assess a pt who has trouble walking sometimes but rest of the time its somewhat normal. I've gone in to my neurologist and appear to be fine then that month or mos down the road I'm having trouble walking, or I walk slow and drag my feet my left leg more. How would you go about determining prognosis?
This is pretty awesome I’ve always wondered how I could get an idea on prognosis and at dx it was not good and scary and since haven’t really had a straight answer - as a scientist I want something concrete. Question I have is the onset of symptoms question- I had first symptom where dropped something and only reason I knew is because it was on the floor. But after that didn’t have any earth shattering symptoms until 6 years later and then official diagnosis was 2 hrs after that. So question is would first symptom that brought me to an mri which showed a single lesion be date for onset of symptoms? October of 1992
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!
If physical therapy improves a symptom, such as gait, does that improve or change the disability score?
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.
That's good if this chart is correct I will still be good in 30 years
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.
Always wanted to know about edss. Im 43 years with rrms. Im on tecfidera.
I’m curious if you can tell difference between EDS. and MS
Thank you, Dr. Boster! That was the answer to my questions that keep me awake at night! ❤️
You are so welcome
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
Hi, Dr. B, it's Therry! You'v already healped me immensely when you told me to stay on Copaxone/glatiramer acetate becauses I'm doing incredibly well on it, and it was so safe to use. We did this on a live chat, and I'll always remember what you said. Well, using this video today, i've determined that I'm in the 3rd decile. I've had symptoms since 1978, my PDSS is 4, and my c olor is quite a nice aqua. I'm not entirely sure what the aqua means, but I am pretty sure that it means that I'll die WITH MS, not of it. I'll tell you what I would love to see, is one of your videos addressing people whose MS is moderate to even mild. Thanks so much for doing the work you do! Hope is the thing with feathers, and you're definitely wearing feathers today in your furry Berber pullover!
So how are you after years of ms? Especially in terms of mobility, i feel scared
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
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?
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.
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.