Would you be willing to make a video one day about mood changes and multiple sclerosis? How can someone differentiate between depression from disease activity and depression from other social/environmental factors?
Great, informative, easy to understand fact based data! I appreciate these types of videos and all your other videos as well! Hope you have a great day!
Very interesting! I was wondering if you might do a video speaking of the recent findings about blood testing for NFL and GFAP to determine disability progression? Thank you, you are always such a trusted source!
Thanks for crunching the numbers, apart from simvastine 80 I also use prozac 40 and aspirin 80 dailly the last few years without any side effects in a desperate effort to preserve any cognitive function that I have left. Last year I stopped taking prozac but after 2 months I started getting speech problems wich dissapeared a few days after continuation. After 30 yrs of PSM I am only left with the function of my neck and head and will take any slim scientific chance with no sideffects. Any suggestions or video on this quest are highly appreciated
Dr- thank you so much for your channel.. much appreciated! Very interesting info. Could you imagine something like this around for a long time working for us?!!
Im very much looking forward to the results at the end of the month . Im currently on 40 mg of Simvastatin at the moment ( my neurologist will only allow me to remain on just 40mg ) so lm keen to hear about this more . I have had no negative side affects and aside from taking Amitriptyline for nerve pain l am on no other DMT . My EDSS is at 6.0 and my latest spine MRI showed no further activity. I would like to have my Simvastatin increased and will consider discussing this again with my neurologist. Thank you so much Dr Brandon 🙏🏼🙂
@@DrBrandonBeaber Thanks for your response Dr Beaber 😊. lm not entirely sure ! My neurologist just said that l was to continue taking the 40mg . She is also hoping to start me on Siponimod ( the jury is still out on that for me ) because l am fearful of the side affects, mainly the risk of getting serious chest infections which could be dangerous . Historically l don’t react well to chesty coughs , colds and chest infections so lm worried that Siponimod would put me at greater risk of getting seriously ill. My next 6 month consultation is due this coming November and l will bring the subject of increasing my Simvastatin to 80 again then . I continue to watch your very informative live feeds , as does my son who also is very interested. Thank you from England , United Kingdom 🏴
Hello Dr Bieber Thank you for this ( l have listened to it three times 😊) . I have SPMS and my doctor has prescribed me Simvastatin today , 40mg once a day . I will let you know how l get on 🤞
@@DrBrandonBeaber Thank you 🙏🏼 and l owe you an apology. I spelt your surname wrong 😫not once , but twice . Im not even going to attempt to blame it on MS 🙂x
Thanks for thorough but approachable analysis. Leaves me feeling encouraged that I've been taking it for a few years now, and hopefully it's applying some kind of brake on my progression. I also take lipoic acid for similar reasons - I understood there was a Phase III trial under way with that for progressive MS - but haven't heard anything for a few years now. Do you have any news of that one?
Thanks! I would love to hear more about the genetic markers that were recently shown to increase the risk of PML with Tysabri. Should insurance or the drug company be offering testing for this? If someone is JC positive, how do they know when it’s time to stop Tysabri? What is an acceptable antibody level? Thanks for all you do.
yes...people have known this for along time...but pharma discovered they could stoprelapses and print money.. no relapses but people still progress. see "ms is mostly neurodegenerative pubmed"
Thanks for the video, it was very informative. As a suggestion for future videos, would you consider the topic of vitamins and minerals, which to take and which to avoid? I used to take selenium and zinc, but now have conflicting advice that they may over stimulate the immune system leading to a relapse. Same with certain B vitamins and copper that are present in many multivitamins. Would be great to hear your views. Thanks
I am not sure taking these vitamins would trigger a relapses, but there are toxicity syndromes with some vitamins. Zinc can compete for copper absorption in the gastrointestinal tract, so chronic use can lead to copper deficiency and sometimes neurological complications. Excess vitamin B6 causes peripheral neuropathy.
@Dr. Brandon Beaber thanks for that. Just find the whole area contradictory and confusing with some sources saying take in moderation, others high doses with some saying to completely avoid. Feel like you can't do right for doing wrong.
Don’t take this. I did, I thought my MS was getting worse. Brain fog, blurry vision, dizziness, weakness, headaches. You need cholesterol for your brain.
More to the point, can statins cause MS? I have had some very nasty side effects which slowly ceased when I stopped taking statins. They were similar to MS, such as dragging feet, breathing difficulties and forgetfulness. No way I would touch the drug at any dose.
considering that RRMS is essentially PPMS with a slower "progression" but more relapses, wouldn't it make sense to give RRMS patients this drug as well?
nice video doc , if i may ask , how close are we to being able to stop disease progression? Are newly diagnosed people nowadays that use DMT , disease progression free?
What study shows that...?..None I seen. see "onset of secondary progressive ms despite long term Rituximab therapy" just look at all the celebrities who had no progression rr and then wind up spms in wheelchairs...David Landers.. Terri Garr..Montel Williams..Jaime Lynn Sigler...just read their interviews to see their worsening...these are not numbers in studies but real people declining/suffering. There are not even long enough studies to determine how many progress to sp. Atara Bio uses 80% figure...DMT just stop relapses but do nothing for brain atrophy which is neurodegeneration and which results in spms or ppms after 10-25 years of mild ms. hsct is only DMT that can result in normal .2 brain atrophy...tysabri and ocrevus do not..ever long term.
We're grouped together RRMS and PPMS but I feel ( I'm PPMS) that very little I read or see via You Tube applies to me . To the point it feels like I'm suffering a different disease .
I just heard today that is a more rare type of MS, but they might categorize PPMS as another type of CNS (central nervous system disorder.) I’m not sure if this is true, it is just something that might be a theory. I think 80% are initially dx with RRMS, many tradition to SPMS. However, some are dx with PPMS at dx……maybe 10-30%. Please don’t take what I heard as truth, as I’m not sure doctors even know with classifying all the subtypes of MS. MRI’s and physical can be of benefit. A Neurologist would need to see you and do all the physical testing.
Thanks for taking the time to reply. Seems to be more questions than answers when we're desperate for any answers ! Cannot get to a neurologist to ask questions ( NHS , UK ) . Dire situation !
@@kevinobrien436 Can you get a friend or family member to get you to see a Neurologist? Have you been to a doctor yet and diagnosed. There is a lot of info on PPMS…..I think two DMT’s(disease modifying therapy)-used to slow further progression might be Ocrevus or Lemtrada. PPMS is very hard, but, most do live with it. I know people with it, who use a motorized scooter or might have help come in and make some meals and help with caretaking. I don’t know what the UK offers. Does the National MS Society help you there? Please make some calls, and ask for help, because you are not alone with PPMS in the UK. There are support groups. Wishing you wellness and the help you need. Call or ask this doctor of places that can help make things in life more accessible to you.🙏🏼 Maybe a video call to a doctor for resources that can help you out. A telemedicine phone call. You’re welcome for responding. Also, any neighbors, churches, family or friend that can help….people will help if you ask, or can point you in the direction for help. Keep the faith and hold onto hope.🙏🏼
Been dx (ppms 13 years) , seen a neurologist once ( at dx ) they seem to be ring fenced by a nurse ( any problem contact them ) who I've seen 5 times and 3 telephone appts. . Turned down for Ocrevus (ms not active ) yet I feel I'm falling apart . Never joined any groups / ms society because I didn't want to surround myself with poorly people or maybe just denial I was poorly . ( my bad , I know) . REALLY , REALLY APPRECIATE you reaching out . THANK YOU !
I am thinking of suggesting my sister to try simvastatin. She is 51, currently on Ocrevus her EDSS is 6.5, CD20 is 0 for the last 20+ months. Thoughts?
Unfortunately neurodegeneration is like a fuse that just keeps burning...and ocrevus and zocor can't blow out the fuse. MS progression is connected to ageing. see "ms is primarily neurodegenerative pubmed"
When it got to the point in your video showing a trial in 2010, I lost interest. It's been 13 years since that trial and it's basically got nowhere. It's not even a treatment that's 'newly' developed. It's not your fault of course, it's just silly it's taken this long with no reward for that specific drug. Even if there was a small chance it 'could' improve progression, it should just be prescribed. It just takes too long for the panel of people who have no clue what it feels like to have this disease to make the decision about giving it or not. It should be the people with MS who make the decision as we're the ones with everything to lose, no one else.
![Multiple Sclerosis Misconceptions Explained by Neurologist [Filmed from Oahu Hawaii!]](http://i.ytimg.com/vi/nPSwIzKFIA0/mqdefault.jpg)
![Multiple Sclerosis Misconceptions Explained by Neurologist [Filmed from Oahu Hawaii!]](/img/tr.png)
I just started simvastatin and have recently been feeling really good
great!
Thanks so much for this, all of us watching this are so fortunate to be able to access this kind of detailed education on MS research.
I'm glad it was helpful. I should have made this video in 2014, but better later than never.
Would you be willing to make a video one day about mood changes and multiple sclerosis? How can someone differentiate between depression from disease activity and depression from other social/environmental factors?
Great, informative, easy to understand fact based data! I appreciate these types of videos and all your other videos as well! Hope you have a great day!
Very interesting! I was wondering if you might do a video speaking of the recent findings about blood testing for NFL and GFAP to determine disability progression? Thank you, you are always such a trusted source!
I do have a video on neurofilament light chain with Dr. Marwa Kaisey: th-cam.com/video/5WaMZ36v6mA/w-d-xo.html
Thanks for crunching the numbers, apart from simvastine 80 I also use prozac 40 and aspirin 80 dailly the last few years without any side effects in a desperate effort to preserve any cognitive function that I have left. Last year I stopped taking prozac but after 2 months I started getting speech problems wich dissapeared a few days after continuation. After 30 yrs of PSM I am only left with the function of my neck and head and will take any slim scientific chance with no sideffects. Any suggestions or video on this quest are highly appreciated
Dr- thank you so much for your channel.. much appreciated! Very interesting info. Could you imagine something like this around for a long time working for us?!!
Im very much looking forward to the results at the end of the month . Im currently on 40 mg of Simvastatin at the moment ( my neurologist will only allow me to remain on just 40mg ) so lm keen to hear about this more . I have had no negative side affects and aside from taking Amitriptyline for nerve pain l am on no other DMT . My EDSS is at 6.0 and my latest spine MRI showed no further activity. I would like to have my Simvastatin increased and will consider discussing this again with my neurologist. Thank you so much Dr Brandon 🙏🏼🙂
What is their objection to simvastatin 80mg, the dose used in the MS STAT study?
@@DrBrandonBeaber Thanks for your response Dr Beaber 😊. lm not entirely sure ! My neurologist just said that l was to continue taking the 40mg . She is also hoping to start me on Siponimod ( the jury is still out on that for me ) because l am fearful of the side affects, mainly the risk of getting serious chest infections which could be dangerous . Historically l don’t react well to chesty coughs , colds and chest infections so lm worried that Siponimod would put me at greater risk of getting seriously ill. My next 6 month consultation is due this coming November and l will bring the subject of increasing my Simvastatin to 80 again then . I continue to watch your very informative live feeds , as does my son who also is very interested.
Thank you from England , United Kingdom 🏴
Hello Dr Bieber
Thank you for this ( l have listened to it three times 😊) . I have SPMS and my doctor has prescribed me Simvastatin today , 40mg once a day . I will let you know how l get on 🤞
I'm glad the video was helpful and good luck with simvastatin.
@@DrBrandonBeaber Thank you 🙏🏼 and l owe you an apology. I spelt your surname wrong 😫not once , but twice . Im not even going to attempt to blame it on MS 🙂x
@@victoriajohnston3219 No problem. Because of Justin, everyone spells my name wrong.
@@DrBrandonBeaber 🤓👍x
Interesting! Thank you for sharing this information, and your thoughts!
Dr. Beaber, this video related to a previous question that I posted. Really appreciate the video.
:) Thanks for the video suggestion.
Thanks! I’m remaining hopeful.
another great “outside the box” video, thanks Dr
Thanks.
Thank you. ❤
Thanks for thorough but approachable analysis. Leaves me feeling encouraged that I've been taking it for a few years now, and hopefully it's applying some kind of brake on my progression.
I also take lipoic acid for similar reasons - I understood there was a Phase III trial under way with that for progressive MS - but haven't heard anything for a few years now. Do you have any news of that one?
Look for Dr. Hannah Yoseph books on this topic. The Myelin sheath is made of cholesterol.
Thanks! I would love to hear more about the genetic markers that were recently shown to increase the risk of PML with Tysabri. Should insurance or the drug company be offering testing for this? If someone is JC positive, how do they know when it’s time to stop Tysabri? What is an acceptable antibody level? Thanks for all you do.
Thanks for the suggestion. I have a video showing PML statistics with tysabri: th-cam.com/video/fu0tuD4E6as/w-d-xo.html
Would you say combining Ocrevus and this drug for ppms is an option dr B. Thanks for the great content
As far as I know, there is no specific interaction between the two, but talk to your own provider.
Will definitely look into this
I personally believe brain atrophy is the most important factor affecting disability in SPMS patients who have had MS for more than 20 years
yes...people have known this for along
time...but pharma discovered they could
stoprelapses and print money.. no
relapses but people still progress.
see "ms is mostly neurodegenerative pubmed"
Thanks for the video, it was very informative.
As a suggestion for future videos, would you consider the topic of vitamins and minerals, which to take and which to avoid? I used to take selenium and zinc, but now have conflicting advice that they may over stimulate the immune system leading to a relapse. Same with certain B vitamins and copper that are present in many multivitamins. Would be great to hear your views. Thanks
I am not sure taking these vitamins would trigger a relapses, but there are toxicity syndromes with some vitamins. Zinc can compete for copper absorption in the gastrointestinal tract, so chronic use can lead to copper deficiency and sometimes neurological complications. Excess vitamin B6 causes peripheral neuropathy.
@Dr. Brandon Beaber thanks for that. Just find the whole area contradictory and confusing with some sources saying take in moderation, others high doses with some saying to completely avoid. Feel like you can't do right for doing wrong.
Would this increase fatigue because of reduction in Coenzyme Q10?
Don’t take this. I did, I thought my MS was getting worse. Brain fog, blurry vision, dizziness, weakness, headaches. You need cholesterol for your brain.
Thanks for sharing your experience.
You also need cholesterol for the myelin sheat, so... I don't get it.
Thx Dr. 🙂
More to the point, can statins cause MS? I have had some very nasty side effects which slowly ceased when I stopped taking statins. They were similar to MS, such as dragging feet, breathing difficulties and forgetfulness. No way I would touch the drug at any dose.
statins can cause muscle aches and rarely severe myositis. They can also rarely cause significant liver disease.
considering that RRMS is essentially PPMS with a slower "progression" but more relapses, wouldn't it make sense to give RRMS patients this drug as well?
Maybe but there is no evidence in RRMS.
nice video doc , if i may ask , how close are we to being able to stop disease progression? Are newly diagnosed people nowadays that use DMT , disease progression free?
Many people with relapsing MS are relatively disease progression free, but I can't say we are close to stopping progression in 100% of people.
What study shows that...?..None I seen.
see "onset of secondary progressive ms
despite long term Rituximab therapy"
just look at all the celebrities who had
no progression rr and then wind up
spms in wheelchairs...David Landers.. Terri Garr..Montel Williams..Jaime Lynn Sigler...just read their interviews to see
their worsening...these are not numbers
in studies but real people declining/suffering.
There are not even long enough studies
to determine how many progress to sp.
Atara Bio uses 80% figure...DMT just
stop relapses but do nothing for brain
atrophy which is neurodegeneration
and which results in spms or ppms
after 10-25 years of mild ms.
hsct is only DMT that can result in
normal .2 brain atrophy...tysabri
and ocrevus do not..ever long term.
QUESTION: Are nitric oxide producing drugs bad for MS
We're grouped together RRMS and PPMS but I feel ( I'm PPMS) that very little I read or see via You Tube applies to me . To the point it feels like I'm suffering a different disease .
I just heard today that is a more rare type of MS, but they might categorize PPMS as another type of CNS (central nervous system disorder.) I’m not sure if this is true, it is just something that might be a theory. I think 80% are initially dx with RRMS, many tradition to SPMS. However, some are dx with PPMS at dx……maybe 10-30%. Please don’t take what I heard as truth, as I’m not sure doctors even know with classifying all the subtypes of MS. MRI’s and physical can be of benefit. A Neurologist would need to see you and do all the physical testing.
Thanks for taking the time to reply.
Seems to be more questions than answers when we're desperate for any answers ! Cannot get to a neurologist to ask questions
( NHS , UK ) . Dire situation !
@@kevinobrien436 Can you get a friend or family member to get you to see a Neurologist? Have you been to a doctor yet and diagnosed. There is a lot of info on PPMS…..I think two DMT’s(disease modifying therapy)-used to slow further progression might be Ocrevus or Lemtrada. PPMS is very hard, but, most do live with it. I know people with it, who use a motorized scooter or might have help come in and make some meals and help with caretaking. I don’t know what the UK offers. Does the National MS Society help you there? Please make some calls, and ask for help, because you are not alone with PPMS in the UK. There are support groups. Wishing you wellness and the help you need. Call or ask this doctor of places that can help make things in life more accessible to you.🙏🏼 Maybe a video call to a doctor for resources that can help you out. A telemedicine phone call. You’re welcome for responding. Also, any neighbors, churches, family or friend that can help….people will help if you ask, or can point you in the direction for help. Keep the faith and hold onto hope.🙏🏼
Been dx (ppms 13 years) , seen a neurologist once ( at dx ) they seem to be ring fenced by a nurse ( any problem contact them ) who I've seen 5 times and 3 telephone appts. . Turned down for Ocrevus (ms not active ) yet I feel I'm falling apart . Never joined any groups / ms society because I didn't want to surround myself with poorly people or maybe just denial I was poorly . ( my bad , I know) . REALLY , REALLY APPRECIATE you reaching out . THANK YOU !
I am thinking of suggesting my sister to try simvastatin. She is 51, currently on Ocrevus her EDSS is 6.5, CD20 is 0 for the last 20+ months. Thoughts?
I can't give you advice here, but I am not aware of any specific interaction between ocrevus and simvastatin
Unfortunately neurodegeneration is like a fuse that just keeps burning...and ocrevus
and zocor can't blow out the fuse.
MS progression is connected to ageing.
see "ms is primarily neurodegenerative pubmed"
When it got to the point in your video showing a trial in 2010, I lost interest. It's been 13 years since that trial and it's basically got nowhere. It's not even a treatment that's 'newly' developed. It's not your fault of course, it's just silly it's taken this long with no reward for that specific drug. Even if there was a small chance it 'could' improve progression, it should just be prescribed. It just takes too long for the panel of people who have no clue what it feels like to have this disease to make the decision about giving it or not. It should be the people with MS who make the decision as we're the ones with everything to lose, no one else.
the med is so old that there is no $$$$$$ to be made, so THEY HAVE NO INCENTIVE
Statins are horrible for the brain.
Unfortunately I could not tolerate statins
#Sharingiscaring
Interesting