I have MS and you can’t just rely on medication, but you have to start changing your diet as well. I’m on Ocrevus for one year and so far no complaints, but the muscle spasms are the worse. That is my only issue right now. Intermittent fasting has helped me because fasting activates your stem cells in your brain. I don’t intend on living my life dealing with these symptoms, so your mind set plays a major role in your health. I have tried muscle spasm meds for Ms and the side effects are awful. CBD oil has helped better for my muscle spasms.
Same here,, just been diagnosed and first ocrevus infusion. No problems with ms or treatment. Only low energy level and spasm . I work out , eat mostly whole foods, cold showers and no inflamation between 7 pm and 7am by just drinking water or tea.
@@gebuikersnaam okay, I’m going to try cold showers. I stretch throughout the day and squats to strengthen my core and right leg. It can be frustrating at times not having the strength I used to have. I was an emt for years and lifting dead weight was easy. Now, carrying groceries can be a challenge, but no pain, no gain. I need to do physical therapy, but I just don’t feel like going 🤣 I’m usually up at 5 am because I can’t sleep more than 6 hours. The muscle spasms wake me up and I have to get out the bed for it to calm down. I am up until 10 or 11 pm every night and up at 5am. I’m used to it now.
I fell off the wagon with fasting the past couple weeks and need to get back on it. 100% feel better when I fast at least 16 to 18 hours a day. Sometimes I go 36 hours, but not more than once or twice a week.
Dr. Boster, this video is SO important for all MS patients! My first 2 DMT's were fiasco's for me. And it took for a different neurologist to say "well, some people can't tolerate Interferon based drugs". My latest. neurologist assures me that should my DMT manufacturer decide to change the requirements for me to no longer be able to get my drug costs reduced; he will move heaven and earth to keep me on the med that works for me; no matter what anyone else says. It is reassuring to have an MD who will fight for me as hard as I fight "MY MS". And since there are more than 1,000,000 MSers out there; EVERYONE of which suffers from a different MS (including identical twins that I have personally met!) I am okay with that.
I don’t see Dr Bolster until May 22nd. No available neuro appointments locally. This started 4/8, totally numb on left side, walking with walker, brain biopsy and no reports yet. Only two lesions but I’m tired and growing impatient daily. Only meds, muscle relaxers and steroid. Growing angrier every damn day…..I have a life to live and grandbabies to chase
I’ve been on Tysabri since 2011, but it now looks like I’ve developed neutralising antibodies; new spots in mri, we only see our neurologists only once a year here in the uk… not enough! I am going to have to swap my dmt but I have to see my neuro first… still waiting for the appointment! Good luck with your issues: wish me luck with mine! ❤️
I’ve tried 4 DMD’s over the course of 28 years. I find as with MS- they change- sometimes i couldn’t handle it- sometimes they worked for years… It’s always different for everyone- Switching DMD’s - always a scary time- but education on the meds- thoroughly explained by my amazing Neuro ( you) lessened the fear as. Understood what to expect. #StrongerTogether ❤ Sharing is caring
I was on Avonex for over 3 years. I had 2 flare ups the last two years on it. My neurologist wouldn’t change my meds. My insurance company changed what they would pay for. I told my neurologist I didn’t want to take shots. He basically fired me and past me off to another doctor in the practice. She asked if I wanted to try a daily pill. I’ve been on this for about 5 years and not had any relapse. She’s also talking about discontinuing at 60……. My husband is retiring next year. I may be contacting your office soon.
MS since 2015. I have been on Ocrevus since 2020 - no new spots on MR but general fast mobility progression since starting Ocrevus. I am considering a new medication.
I'm a 40 year old male and, I was recently diagnosed. I have around 20 black holes and enhancing lesions along with non enhancing on my spine. My ears are ringing and off balance. I walk with a wide gate and have or had pretty much every symptom I've read about. I guess I'm a little scared.
Thank you for the rant! My neurologist is one of those. He’s told me that he takes patients off of DMDs at 60… I’ve a few years to go before I’m 60, but now plan to flight back. I don’t know if you’ve previously covered this in a video, but it would be good to get some advice on considerations & risk factors of changing from different types of DMD to another, such as Gilenya to Ocrevus.
Ocrevus for over 3 years. No new spots but physical symptoms while nothing new have gotten a lot worse. I noticed a little change before Ocrevus too. I really felt confident in trying stem cell treatment but can't get approval due to continuing trials.
This sounds like me. Been on Ocrevus for a few years...and just recently had a new spot on my spine show up....but physically I'm doing much worse...even though I keep getting told "doing great...no new spots". I have Primary Progressive....so I think I just thought getting physically worse is normal. But I hate my doctor being "happy" with the lack of new spots...while ignoring my "quality of life" degradation.
Good morning Dr. Boster! I love spending Monday mornings having coffee with you. Thanks so much for this video. My MS center does not measure brain volume loss. Is this a critical measurement in your opinion?
Thank you Dr. Boster for blessing all of us with your words of wisdom!!! You’re a brilliant man!!! I wish I could come see you one day!!! God bless you & all of you here in this community!!
I had to change DMT when I was diagnosed with the the JC virus and I had just gotten worse since I have not taken a DMT since 2019. I have lost my ability to walk in 2021.
It's not supposed to make you better, unfortunately. Meds can't undo existing damage. But they can help slow down disability and they should cut down on relapses.
My identical twin sister has had MS for over 20 years and it's very advanced. Then she got breast cancer, likely in part due to the immunosupressant meds. Luckily they got the BC early but her MS is a devastating disease.
Dr Boster, your videos have changed my life! Thank you so much...I have a question: I took the first course of Lemtrada (year 1 and 2) and after the 5 years my health went down- not a relapse. My MRI shows stability. I've been offered Lemtrada again. I'm 50 years old and would like to know that after this round of Lemtrada if I show disease progression what would be my options. I'm scared that by using a highly effective DMT now so my future treatments will not be as good and I may go downhill. I've been stable Lemtrada in 2017. Thank you 😊
I agree hogwash in stopping med now that I'm a 65 y/o. I plan a severe conversation m w/ neuro @ July appt. I've had a Tumefactive lesion & pray I don't get another one - the smaller lesions are awful too, but don't make me freak out as much.
I don’t have attacks, I am slowly getting worse even though there is no change in MRI. I was on Tysabri for 11 years, Ocrevus for 6 1/2 years, now two Briumvi treatments/infusions so far
I have RRMS that was diagnosed about 10 years ago. I was doing well on Copaxone until there was a minor reformulation that introduced something my body couldn’t handle. Next was glatiramer acetate, which quickly caused needle fatigue. My body didn’t like Tecfidera. I’ve been on Ocrevus for 6.5 years. I think I’ve had just a small lesion appear while on it, but the big one that causes the most problems may also have appeared since starting Ocrevus. The longer I’m on it, the shorter amount of time it lasts. We’re trying a five-day round of Solu-medrol a month before the infusion to see if that helps. But I was already in an exacerbation before starting the S-M. Tomorrow, I have the Ocrevus infusion. When I see my doc next month, I’ll ask about other options especially because I’m slowly but steadily getting worse.
Hello Dr Boster your videos are always inspiring and helpful please make a video on Rituximab for people who have less choices and have you ever tried this for your patients or do you know anyone taking it ? And please does it cause hair loss ?? Your response would be highly appreciated...thank you .
I was diagnosed almost 24 years ago. I’m 63 now. I have been on Tysabri for 3 years. No new lesions but balance is worse and I’m now using a cane. I have nucleated red blood cells and my liver enzymes are elevated. Should I stop Tysabri and try something else?
I was on Rituxan for about 2 years and loved it. But when I got an infection that didn’t involve MS or rituxan at all the neurologist changed my medication. Why did he insist I do that? Even when the infection went away weeks after seeing the doctor he won’t prescribe the Rituxan again. Now I’m on kesimpta which I don’t mind but I’m getting painful scars under my skin and possible muscles just like with copaxone.
I have now blown through all 6 classes of MS drugs and my MS specialist is talking about switching to an off-label option (e.g. an RA drug). I haven't been able to find any info on this. Is this something you ever have to do, or what do you do with patients in that situation? She had hoped to switch me to a BTK inhibitor after 2 years on Tysabri (JCV+) but that's not working out now thanks to the clinical trial results. :(
I have been referred to Neurologist by a Neurosurgeon . I was diagnosed with RA in 2009, and have been through multiple drugs to treat with no success. I have a wait to see the neurologist, but my symptoms are getting worse. What can I do to help?
Thanks for this important info Dr B! I’ve been on Ocrevus for 2 years and feeling great. However, I know long term immune suppression can be a problem. Is there a general timeline where a patient may need to consider switching or is it dependent on the immunoglobulin labs?
Exact same thing as me! On Ocrevus for 2 years now and thankfully no MS symptoms anymore but how long can we be without B cells, aren’t they important? lol
I have RRMS. I am on treatment of Ovrevus since 2021. The first two years I started using the medication, everything was going very well. No side effects. But after the last two doses, I can't seem to avoid getting infections. From January until now, I've had very severe infections five times in a row. It lasted almost a month each time to recover from each one. Because my fever didn't drop below 40 degrees Celsius during the infections, I ended up in the hospital every time. I guess while trying to protect myself from MS, I'll end up disabled due to an infectious disease
I’ve been on Aubagio for 6 months, and I feel like I’m just getting worse. Haven’t had an MRI since I was in the hospital last August, but I can’t figure out if I’m relapsing or if this is just normal. It’s so confusing. I feel so trapped.
I have a question. I haven't been on a. MS med in years as my OSU dr. Said I didn't need it anymore. I'm 65 now and didn't have a relapse for several years. Since he took me off MS meds, my mother (dementia) and stepfather (alzheimers) came to live with me. I've had a few relapses since then (3 years they are with me). What can I get on that won't let me stay sick all the time. I don't go to OSU anymore as my neurologist retired a few years ago.
Maybe you should try to find another neurologist, preferably an MS specialist. There are docs out there who will still treat you! Maybe The National MS Society could help you find an MS specialist.
I'm getting worse in practical functioning, and we (my neurologist and I) can't think of anywhere to go to from Ocravus (autocorrect suggests: October, here in Israel - also true). A meaningful Memorial Day and a Happy Independence Day from Jerusalem! 🇮🇱 🕯 🕎 🎉
I have MS and you can’t just rely on medication, but you have to start changing your diet as well. I’m on Ocrevus for one year and so far no complaints, but the muscle spasms are the worse. That is my only issue right now. Intermittent fasting has helped me because fasting activates your stem cells in your brain. I don’t intend on living my life dealing with these symptoms, so your mind set plays a major role in your health. I have tried muscle spasm meds for Ms and the side effects are awful. CBD oil has helped better for my muscle spasms.
Same here,, just been diagnosed and first ocrevus infusion. No problems with ms or treatment. Only low energy level and spasm . I work out , eat mostly whole foods, cold showers and no inflamation between 7 pm and 7am by just drinking water or tea.
What is CBD oil can u explain it to me plz
@@gebuikersnaam okay, I’m going to try cold showers. I stretch throughout the day and squats to strengthen my core and right leg. It can be frustrating at times not having the strength I used to have. I was an emt for years and lifting dead weight was easy. Now, carrying groceries can be a challenge, but no pain, no gain. I need to do physical therapy, but I just don’t feel like going 🤣 I’m usually up at 5 am because I can’t sleep more than 6 hours. The muscle spasms wake me up and I have to get out the bed for it to calm down. I am up until 10 or 11 pm every night and up at 5am. I’m used to it now.
I fell off the wagon with fasting the past couple weeks and need to get back on it. 100% feel better when I fast at least 16 to 18 hours a day. Sometimes I go 36 hours, but not more than once or twice a week.
what are the muscle spasm meds for Ms ?
Dr. Boster, this video is SO important for all MS patients!
My first 2 DMT's were fiasco's for me.
And it took for a different neurologist to say "well, some people can't tolerate Interferon based drugs".
My latest. neurologist assures me that should my DMT manufacturer decide to change the requirements for me to no longer be able to get my drug costs reduced; he will move heaven and earth to keep me on the med that works for me; no matter what anyone else says.
It is reassuring to have an MD who will fight for me as hard as I fight "MY MS".
And since there are more than 1,000,000 MSers out there; EVERYONE of which suffers from a different MS (including identical twins that I have personally met!) I am okay with that.
I don’t see Dr Bolster until May 22nd. No available neuro appointments locally. This started 4/8, totally numb on left side, walking with walker, brain biopsy and no reports yet. Only two lesions but I’m tired and growing impatient daily. Only meds, muscle relaxers and steroid. Growing angrier every damn day…..I have a life to live and grandbabies to chase
I’ve been on Tysabri since 2011, but it now looks like I’ve developed neutralising antibodies; new spots in mri, we only see our neurologists only once a year here in the uk… not enough! I am going to have to swap my dmt but I have to see my neuro first… still waiting for the appointment! Good luck with your issues: wish me luck with mine! ❤️
I’ve tried 4 DMD’s over the course of 28 years.
I find as with MS- they change- sometimes i couldn’t handle it- sometimes they worked for years…
It’s always different for everyone-
Switching DMD’s - always a scary time- but education on the meds- thoroughly explained by my amazing Neuro ( you) lessened the fear as. Understood what to expect.
#StrongerTogether
❤
Sharing is caring
I was on Avonex for over 3 years. I had 2 flare ups the last two years on it. My neurologist wouldn’t change my meds. My insurance company changed what they would pay for. I told my neurologist I didn’t want to take shots. He basically fired me and past me off to another doctor in the practice. She asked if I wanted to try a daily pill. I’ve been on this for about 5 years and not had any relapse. She’s also talking about discontinuing at 60……. My husband is retiring next year. I may be contacting your office soon.
Do you mind if I ask, what pill for ms you taking now?
I’m struggling with my treatment atm
MS since 2015. I have been on Ocrevus since 2020 - no new spots on MR but general fast mobility progression since starting Ocrevus. I am considering a new medication.
Same here. Which medication are you considering? 💊 💉
Same. SPMS went into overdrive since starting Ocrevus 😭 I'm out of options. Pray for BTK inhibitors.
Is it BTK good for MS
@@Jerusalem_Warrior I am considering Mavenclad
Thank you so much, always so grateful to you ✨ you’re a star 🌟
I'm a 40 year old male and, I was recently diagnosed. I have around 20 black holes and enhancing lesions along with non enhancing on my spine. My ears are ringing and off balance. I walk with a wide gate and have or had pretty much every symptom I've read about. I guess I'm a little scared.
I totally agree with the age aspect. IMO I'll never be too old for a DMT
Thank you for the rant! My neurologist is one of those. He’s told me that he takes patients off of DMDs at 60… I’ve a few years to go before I’m 60, but now plan to flight back.
I don’t know if you’ve previously covered this in a video, but it would be good to get some advice on considerations & risk factors of changing from different types of DMD to another, such as Gilenya to Ocrevus.
thats crazy! how can a dr label all 60 year olds as the same? how can with holding treatment help
Yes sir I've been following your channels I have been diagnosed with MS
Ocrevus for over 3 years. No new spots but physical symptoms while nothing new have gotten a lot worse. I noticed a little change before Ocrevus too. I really felt confident in trying stem cell treatment but can't get approval due to continuing trials.
PIRA (Progression Independent of Relapse Activity). Smouldering MS.
This sounds like me. Been on Ocrevus for a few years...and just recently had a new spot on my spine show up....but physically I'm doing much worse...even though I keep getting told "doing great...no new spots". I have Primary Progressive....so I think I just thought getting physically worse is normal. But I hate my doctor being "happy" with the lack of new spots...while ignoring my "quality of life" degradation.
I'm also in this boat. My SPMS went into overdrive after starting Ocrevus 2 years ago.
Good morning Dr. Boster! I love spending Monday mornings having coffee with you. Thanks so much for this video. My MS center does not measure brain volume loss. Is this a critical measurement in your opinion?
Nor does mine Vickie. I’d really like to have this measured as it’s a good indicator overtime of stability or the reverse!
@@lemonpeelangelfish me too. I know it is hard because it fluctuates throughout the day but I would still like to know.
Thank you Dr Boster, this is such an important discussion! 🔥🔥❤️🔥🔥🔥
Thank you, Dr. Boster. My doctor just switched me to Kesimpta from Mavenclad for just the same reasons you suggested. It gives me hope!
Thank you Dr. Boster for blessing all of us with your words of wisdom!!! You’re a brilliant man!!! I wish I could come see you one day!!! God bless you & all of you here in this community!!
I am so Thankful that you are my Dr!
I had to change DMT when I was diagnosed with the the JC virus and I had just gotten worse since I have not taken a DMT since 2019. I have lost my ability to walk in 2021.
Tried MS meds Has not made it better. Has done the opposite. try no processed foods and good stuff. Hope it works.
It's not supposed to make you better, unfortunately. Meds can't undo existing damage. But they can help slow down disability and they should cut down on relapses.
You are a great doctor. All your videos are amazing and always helpful. Thanks for making such efforts.😊
Thank you very much for this video! Greets from Paris
Kesimpta for 6 months with same symptoms before starting. Doc already wanting to change medication.
Takes at least 6 months to start working.
My identical twin sister has had MS for over 20 years and it's very advanced. Then she got breast cancer, likely in part due to the immunosupressant meds. Luckily they got the BC early but her MS is a devastating disease.
❤thanks for your great informations and health advices 😊
Dr Boster, your videos have changed my life! Thank you so much...I have a question: I took the first course of Lemtrada (year 1 and 2) and after the 5 years my health went down- not a relapse. My MRI shows stability. I've been offered Lemtrada again. I'm 50 years old and would like to know that after this round of Lemtrada if I show disease progression what would be my options. I'm scared that by using a highly effective DMT now so my future treatments will not be as good and I may go downhill. I've been stable Lemtrada in 2017. Thank you 😊
I agree hogwash in stopping med now that I'm a 65 y/o. I plan a severe conversation m w/ neuro @ July appt. I've had a Tumefactive lesion & pray I don't get another one - the smaller lesions are awful too, but don't make me freak out as much.
I don’t have attacks, I am slowly getting worse even though there is no change in MRI. I was on Tysabri for 11 years, Ocrevus for 6 1/2 years, now two Briumvi treatments/infusions so far
Good morning boster ❤❤❤😢😢😢😮😮
I have RRMS that was diagnosed about 10 years ago. I was doing well on Copaxone until there was a minor reformulation that introduced something my body couldn’t handle. Next was glatiramer acetate, which quickly caused needle fatigue. My body didn’t like Tecfidera. I’ve been on Ocrevus for 6.5 years. I think I’ve had just a small lesion appear while on it, but the big one that causes the most problems may also have appeared since starting Ocrevus. The longer I’m on it, the shorter amount of time it lasts. We’re trying a five-day round of Solu-medrol a month before the infusion to see if that helps. But I was already in an exacerbation before starting the S-M. Tomorrow, I have the Ocrevus infusion. When I see my doc next month, I’ll ask about other options especially because I’m slowly but steadily getting worse.
Thank you! (Oh, and I love the rant. I will be 60 in February - What???)
Thank you for allllll your videos ❤❤❤❤
Thanks Aaron 💪🏾✌🏾
Hello Dr Boster your videos are always inspiring and helpful please make a video on Rituximab for people who have less choices and have you ever tried this for your patients or do you know anyone taking it ? And please does it cause hair loss ??
Your response would be highly appreciated...thank you .
I asked my nuro about he age thing with meds. He said he won't take me off just because I hit a age limit
pleas discuss Primary Progressive MS
Hi from Israel always waiting to yours video thanks dear doctor
I changed from Copaxone to a pill (Tecfidera), because i was too thin and did not have enough places, with enough fat to inject.
I was diagnosed almost 24 years ago. I’m 63 now. I have been on Tysabri for 3 years. No new lesions but balance is worse and I’m now using a cane. I have nucleated red blood cells and my liver enzymes are elevated. Should I stop Tysabri and try something else?
I was on Rituxan for about 2 years and loved it. But when I got an infection that didn’t involve MS or rituxan at all the neurologist changed my medication.
Why did he insist I do that? Even when the infection went away weeks after seeing the doctor he won’t prescribe the Rituxan again.
Now I’m on kesimpta which I don’t mind but I’m getting painful scars under my skin and possible muscles just like with copaxone.
nice
MORNING DOC.WHAT ANTIBIOTIC SHOULD I TAKE FOR UNARY TRACK INFECTION
Would live your thoughts on ocrevus. Or your thoughts in the newest ms meds.
is there a newer medicine better than gilenya fingolimod 0.5mg? which is what im on right now
I have now blown through all 6 classes of MS drugs and my MS specialist is talking about switching to an off-label option (e.g. an RA drug). I haven't been able to find any info on this. Is this something you ever have to do, or what do you do with patients in that situation? She had hoped to switch me to a BTK inhibitor after 2 years on Tysabri (JCV+) but that's not working out now thanks to the clinical trial results. :(
Dalfampridine is a potassium channel blocker. Should I be avoiding potassium rich foods?
I have been referred to Neurologist by a Neurosurgeon . I was diagnosed with RA in 2009, and have been through multiple drugs to treat with no success. I have a wait to see the neurologist, but my symptoms are getting worse. What can I do to help?
Would you care to explain, how MS would affect pregnancy. And will it be harmful for the child in womb?
not a dr but i was pregnant and had ms. in pregnancy your immunity is suppressed so ms does not cause any flare ups.
That is what my dr sajd
Thanks for this important info Dr B! I’ve been on Ocrevus for 2 years and feeling great. However, I know long term immune suppression can be a problem. Is there a general timeline where a patient may need to consider switching or is it dependent on the immunoglobulin labs?
Exact same thing as me! On Ocrevus for 2 years now and thankfully no MS symptoms anymore but how long can we be without B cells, aren’t they important? lol
I have RRMS. I am on treatment of Ovrevus since 2021. The first two years I started using the medication, everything was going very well. No side effects. But after the last two doses, I can't seem to avoid getting infections. From January until now, I've had very severe infections five times in a row. It lasted almost a month each time to recover from each one. Because my fever didn't drop below 40 degrees Celsius during the infections, I ended up in the hospital every time. I guess while trying to protect myself from MS, I'll end up disabled due to an infectious disease
I took Mavenclad 5 years ago-no attack since then. I feel like I’d like to protect my brain volume. Suggestions for a new approach?
I’ve been on Aubagio for 6 months, and I feel like I’m just getting worse. Haven’t had an MRI since I was in the hospital last August, but I can’t figure out if I’m relapsing or if this is just normal. It’s so confusing. I feel so trapped.
I have a question. I haven't been on a. MS med in years as my OSU dr. Said I didn't need it anymore. I'm 65 now and didn't have a relapse for several years. Since he took me off MS meds, my mother (dementia) and stepfather (alzheimers) came to live with me. I've had a few relapses since then (3 years they are with me). What can I get on that won't let me stay sick all the time. I don't go to OSU anymore as my neurologist retired a few years ago.
Maybe you should try to find another neurologist, preferably an MS specialist. There are docs out there who will still treat you! Maybe The National MS Society could help you find an MS specialist.
Anyone from the ms family tried Rituximab please help
Is there an age at which you deem the risks of Ocrevus to outweigh the benefits?
Hi doc so I had 2 spots shrank is it a good thing
Of course ! What medecine you take?
Hi Dr Boster. Does any white specs in the neck spinal cord MRI indicate MS? How many white specs in the spinal cord indicates MS. Thank you.
It might. I think I have one or two there, but I dont think they decide by the count of them. Every MRI I got, it was brain+spine in the neck area
Originally did neck MRI before brain one. Enough spots to make everyone VERY suspicious of MS. Brain results and spinal tap finalized the diagnosis.
Why treat an illness for many year's only to be told nah getting older now. See ya, God Speed 😵💫
❤
I'm getting worse in practical functioning, and we (my neurologist and I) can't think of anywhere to go to from Ocravus (autocorrect suggests: October, here in Israel - also true). A meaningful Memorial Day and a Happy Independence Day from Jerusalem! 🇮🇱 🕯 🕎 🎉