There was also a long term study based not on relapse but on progress. Those who had least progress had a better health in future. It is also shown on table with years and edds levels.
Thank you for the video Dr Brandon, it's hard to say if I actually ever had any real relapses because I believe mine was progressive from the start. I'm still walking with a walker of course but I work out as often as I can and I just started physical therapy with a new place and I'm very excited about it
I recently heard that one of the outcomes of the MacDonald criteria revisions was the elimination of the "artificial" types of MS. RRMS, SPMS, PPMS etc are all gone now, which I believe you also addressed here @ 8:28 or thereabouts.
Thanks Dr. Beaber! I loved this video. I completely agree with the EDSS scales assessment. It is time for more meaningful testing and scales to be used. Curious what tests and scales you think should be used at our annual exams. Does your clinic do multiple tests each year?
For individual doctors, I don't think using the MS functional composite is that helpful because 1) it's very time consuming and 2) What action can I take if there is a slight decline other than my usual recommendations? However, it is very helpful for clinical research and is more sensitive to small changes than the EDSS.
Dr Brandon, will you please do a video ranking the immuno suppression attributes of the various DMTs. Thinking I may need to switch off ocrevus after a horrible bout with COVID.
Great video, thanks! I’d like a video on aggressive MS. For those of us in the minority that quickly get to EDSS 7.5. I was unable to walk within 4 years of my first sign of foot drop. Whenever a new symptom appeared it never went away so I assume I have PPMS even though my neurologist said it was RRMS so I could try DMT’s. What’s going on in our spinal cord and brain? Why do we progress so quickly when we hear PPMS is a slow progression? Thanks
What are your thoughts on rapamycin for a possible MS treatment??? Saw an article about the drug off script for slowing aging. Possibly it might slow or help progression of MS. At this point in my ms journey Im looking at any possible answers. Thank you
Thank you for all your videos. I am 62, was diagnosed earlier this year and am on Kesimpta. I currently have no disability, no fatigue, no brain fog and do not react to heat. I run 5km every other day, do weights and yoga, take 5000 IU vitamin D each day and follow the Overcoming MS Diet. I have no spine lesions. Approximately how long do you think I have before I start getting disabilities? Is there anything else you would recommend to increase my chances of remaining disability-free? The OMS diet is working. My cholesterol has dropped from 7.5 to 5.8 in only five months and my vitamin D is now 178 mmol/L. My neurologist thinks that is too high, but the OMS book says otherwise. What level of vitamin D do you recommend for PwMS?
This is chock full of information Doc! That’s me… I can give ya a burst 💥 of energy- but slows down significantly after a little… #Sharingiscaring Have a great week
Thanks for this info Dr. Beaber. Unfortunately, I'm familiar with retinal thinning and vision loss. However, my overall disability is minimal. I have noticed that it is harder to build endurance as I age, but not unlike the average person. I wish there was an easy way to separate declines in ability due to aging vs MS. My neurologist is more concerned about my clinical disability than EDSS testing, which I believe makes more sense. Treat the patient, not just the disease.
So is that 15 years after diagnosis, or 15 years after your first symptoms appeared? I don't know what they're going by, but it should really be based on counted by from when your first symptoms appeared.
When you refer to "relapses" within a time period. In your example, 3 relapses within 15 years, how are relapses counted? I had a clinically isolated event, then 4 years later had an actual Ms flare where half my body, from head to toe, went numb. However the symptom from the clinically isolated event did not reoccur. (My eye shifted up within my eye socket, but at the time the physicians I saw could not make sense of it and called it a TIA) SO IS THAT 2 WITHIN 4 YEARS? OR 1 SO FAR? Thanks for all the informative insights you offer. I am grateful for the knowledge that you share.
The term "relapse" is misleading as it may refer to an attack with a completely new symptom. A TIA is a completely different condition unrelated to demyelinating disease, though it is certainly possible to have two separate condition.
it sounds like ppms, spms und rrms are all basically the same in a way. And no matter the treatment everyone with ms is disabled after around 15 years?
I was diagnosed 23 years ago. I've been on DMTs for most of that, but only the last 7 years on a higher efficacy DMT. I'm not disabled. Lots of people aren't. It's very variable.
what medicine pls? my son used Kesimpta and his not doing good, he starts slowly symptoms now he can hardly walk with a bad tremor on head, right arm.. pls advice.. and i hope if Dr. B can advice @@uptoeleven
@@uptoeleven good to hear that.. I know it varies for many ppl..to me the sharts made it look like no matter the relapses, the treatments, or the lifestyle everyone is disabled after 15 years. maybe I just dont understand shart sometimes :D
Not everyone with MS. There is a wide range, and some people with MS have a rate of atrophy comparable to normal aging. More info in this video: th-cam.com/video/pmHvawBFC2M/w-d-xo.html
@@DrBrandonBeaber thank you very much, doctor! Here's to hoping I (and the rest of us here) fall somewhere closer to that part of the MS population. We always learn something new on your videos, doctor!
Interesting video. For me I had MS undiagnosed and untreated for about 12 years, and had 3 relapses in that time. It was after the third relapse that the disease affected me enough to seriously seek a diagnosis. Since beeing treated with tysabri, then Retuximab I haven't experienced a relapse and my disability has been getting better. Paticularly since I started Retuximab I stopped needing a cain for long distances although I am still limited in how long I can walk it just no longer limits me in what I do on a day to day basis.
It's good to hear you are doing well. There is evidence that MS disease modifying therapies have an effect on "progression independent of Relapse Activity (PIRA)" and some people improve while taking them.
Bloody hell, thanks for the info but how depressing. So I've probably had it for more than 15 years and have the bad MS by the sound of it lol. It doesn't matter. A cure will come in the next 5 years. Just have to hang in there and be mentally and emotionally strong and try not to die. Going to work out harder at the gym. I think I'm getting better from the gym actually. I recommend it to anyone who can do it. Today's my rest day though. I'm gonna have a beer now 😎😃👌✌
Hi Dr. Brandon, I hope you're doing well! I wanted to check if you’re looking for a video editor and thumbnail designer for your TH-cam channel. I'd love to help enhance your content and visuals. Let me know if you're interested! Best regards,
Thank you for all you do for the MS community.
You're very welcome
Dear All, the only promising thing to say is that nowadays the reasearch is focusing on remyelinating therapies, no need to have DMTs anymore!
Does it make sense to remyelinate if the immune system is still attacking the myelin?
@@uptoeleven that's why It will be complementary to a DMT. Sooner this desease will disappear. I am sure!
Just to add a remark, next year CNM AU8 will be on market......and a new story will be written....
Right. I smell another groundbreaking flop.
@@Ennugia I don't think so. Why do you say that?
There was also a long term study based not on relapse but on progress. Those who had least progress had a better health in future. It is also shown on table with years and edds levels.
Thank you for the video Dr Brandon, it's hard to say if I actually ever had any real relapses because I believe mine was progressive from the start. I'm still walking with a walker of course but I work out as often as I can and I just started physical therapy with a new place and I'm very excited about it
I recently heard that one of the outcomes of the MacDonald criteria revisions was the elimination of the "artificial" types of MS. RRMS, SPMS, PPMS etc are all gone now, which I believe you also addressed here @ 8:28 or thereabouts.
I will do a review of the updated diagnostic criteria once they are published.
@@DrBrandonBeaber
I was told it came from ECTRIMS. I look forward to your analysis & how this may change insurance coverages.
Thanks 4 all you do.
Great video. Thank you for your contribution to the MS community.
Thanks Dr. Beaber! I loved this video. I completely agree with the EDSS scales assessment. It is time for more meaningful testing and scales to be used. Curious what tests and scales you think should be used at our annual exams. Does your clinic do multiple tests each year?
For individual doctors, I don't think using the MS functional composite is that helpful because 1) it's very time consuming and 2) What action can I take if there is a slight decline other than my usual recommendations? However, it is very helpful for clinical research and is more sensitive to small changes than the EDSS.
@@DrBrandonBeaber thanks!
Any updates on CAR-T?
Or phosphodiesterase-5 inhibitors (PDE5-I)?
*patient w/ AQP4 ab positive with Dysautonomia, Sjogren’s, and MCTD presentation.
Hey Dr B! Thank you for all that you do. Any word on pipe 307?
We are all waiting for that. Be patient 😊
Not since my video on the topic.
Thank you Dr Beaber. We sure appreciate you & your analysis.
Thanks again Dr Brandon some very good points of interest 👍🙂
This is very informative. Thank you Dr. Beaber!
:)
Thanks for all your info doctor 🙏 God bless you
Hi from Israel interesting video thanks dear doctor
Hey doc. Brain MRI seen their is no lesion in brain.. its means MS Lesion only in Spinal cord? It possible? Please rply doc
Dr Brandon, will you please do a video ranking the immuno suppression attributes of the various DMTs. Thinking I may need to switch off ocrevus after a horrible bout with COVID.
Would you have any information about the new ocrevus subcutaneous infection? I think it has been approved
Great video, thanks! I’d like a video on aggressive MS. For those of us in the minority that quickly get to EDSS 7.5. I was unable to walk within 4 years of my first sign of foot drop. Whenever a new symptom appeared it never went away so I assume I have PPMS even though my neurologist said it was RRMS so I could try DMT’s. What’s going on in our spinal cord and brain? Why do we progress so quickly when we hear PPMS is a slow progression? Thanks
What are your thoughts on rapamycin for a possible MS treatment??? Saw an article about the drug off script for slowing aging. Possibly it might slow or help progression of MS. At this point in my ms journey Im looking at any possible answers.
Thank you
Thank you for all your videos. I am 62, was diagnosed earlier this year and am on Kesimpta. I currently have no disability, no fatigue, no brain fog and do not react to heat. I run 5km every other day, do weights and yoga, take 5000 IU vitamin D each day and follow the Overcoming MS Diet. I have no spine lesions. Approximately how long do you think I have before I start getting disabilities? Is there anything else you would recommend to increase my chances of remaining disability-free? The OMS diet is working. My cholesterol has dropped from 7.5 to 5.8 in only five months and my vitamin D is now 178 mmol/L. My neurologist thinks that is too high, but the OMS book says otherwise. What level of vitamin D do you recommend for PwMS?
This is chock full of information Doc!
That’s me… I can give ya a burst 💥 of energy- but slows down significantly after a little…
#Sharingiscaring
Have a great week
Thanks for this info Dr. Beaber. Unfortunately, I'm familiar with retinal thinning and vision loss. However, my overall disability is minimal. I have noticed that it is harder to build endurance as I age, but not unlike the average person. I wish there was an easy way to separate declines in ability due to aging vs MS. My neurologist is more concerned about my clinical disability than EDSS testing, which I believe makes more sense. Treat the patient, not just the disease.
What about the Coimbra protocol? Is it true this protocol created by Brazilian doctor, Dr Coimbra, can put some cases of MS into remission?
You may appreciate this video I made on the coimbra protocol: th-cam.com/video/XPWNc0f2iHE/w-d-xo.html
Great video. Can MS be seen on MRI without Gadolineum?
Yes, though gadolinium contrast dye makes it easier to see if a lesion is recent and active.
So is that 15 years after diagnosis, or 15 years after your first symptoms appeared? I don't know what they're going by, but it should really be based on counted by from when your first symptoms appeared.
When you refer to "relapses" within a time period. In your example, 3 relapses within 15 years, how are relapses counted? I had a clinically isolated event, then 4 years later had an actual Ms flare where half my body, from head to toe, went numb. However the symptom from the clinically isolated event did not reoccur. (My eye shifted up within my eye socket, but at the time the physicians I saw could not make sense of it and called it a TIA) SO IS THAT 2 WITHIN 4 YEARS? OR 1 SO FAR? Thanks for all the informative insights you offer. I am grateful for the knowledge that you share.
The term "relapse" is misleading as it may refer to an attack with a completely new symptom. A TIA is a completely different condition unrelated to demyelinating disease, though it is certainly possible to have two separate condition.
Thank you for using extravasate in a sentence
:) Why miss a chance to use a 6-dollar word?
My son has been diagnosed with ms i want your help reading his mri please, how to connect
Sorry, but I can't give personal advice here. I wish him the best of luck.
I am not in the USA. any online consultancy
it sounds like ppms, spms und rrms are all basically the same in a way. And no matter the treatment everyone with ms is disabled after around 15 years?
I was diagnosed 23 years ago. I've been on DMTs for most of that, but only the last 7 years on a higher efficacy DMT. I'm not disabled. Lots of people aren't. It's very variable.
That's my impression, too. Sounds like no matter the subtype, it is generally the same disease with the same long term prognosis.
what medicine pls? my son used Kesimpta and his not doing good, he starts slowly symptoms now he can hardly walk with a bad tremor on head, right arm.. pls advice.. and i hope if Dr. B can advice @@uptoeleven
@@uptoeleven good to hear that.. I know it varies for many ppl..to me the sharts made it look like no matter the relapses, the treatments, or the lifestyle everyone is disabled after 15 years. maybe I just dont understand shart sometimes :D
15 years after diagnosis, or 15 years after first symptoms started? They are 2 very different things.
Thanks.
Dr. Beaber, what do you mean SOME people with MS have accelerated atrophy? I thought we all did.
Not everyone with MS. There is a wide range, and some people with MS have a rate of atrophy comparable to normal aging. More info in this video: th-cam.com/video/pmHvawBFC2M/w-d-xo.html
@@DrBrandonBeaber thank you very much, doctor! Here's to hoping I (and the rest of us here) fall somewhere closer to that part of the MS population. We always learn something new on your videos, doctor!
Interesting video. For me I had MS undiagnosed and untreated for about 12 years, and had 3 relapses in that time. It was after the third relapse that the disease affected me enough to seriously seek a diagnosis. Since beeing treated with tysabri, then Retuximab I haven't experienced a relapse and my disability has been getting better. Paticularly since I started Retuximab I stopped needing a cain for long distances although I am still limited in how long I can walk it just no longer limits me in what I do on a day to day basis.
It's good to hear you are doing well. There is evidence that MS disease modifying therapies have an effect on "progression independent of Relapse Activity (PIRA)" and some people improve while taking them.
HSCT FOR REAL RESULTS
Hdl, zinc, manganese, vitamin E/D.
So basically controlling the relapses don't mean anything 🙄
It's not has valuable as people believe.
Bloody hell, thanks for the info but how depressing. So I've probably had it for more than 15 years and have the bad MS by the sound of it lol. It doesn't matter. A cure will come in the next 5 years. Just have to hang in there and be mentally and emotionally strong and try not to die. Going to work out harder at the gym. I think I'm getting better from the gym actually. I recommend it to anyone who can do it. Today's my rest day though. I'm gonna have a beer now 😎😃👌✌
Hi Dr. Brandon,
I hope you're doing well! I wanted to check if you’re looking for a video editor and thumbnail designer for your TH-cam channel. I'd love to help enhance your content and visuals.
Let me know if you're interested!
Best regards,
I used to be a 3, now I'm a 6. I guess I better get on the DMT bandwagon. 😞