Why BOTHER taking MS Medicines?
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- Опубліковано 19 лис 2023
- Why bother taking MS Disease Modifying Therapy? In this video, I provide you an answer.
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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 to help educate 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!
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PPMS. I quit everything: appointments, MRIs, blood samples, treatments. I feel so free now and I'm happier than ever. My illness, my choice. I know my destination, I don't need to be reminded the path will be tough.
I was diagnosed with MS in 2011 and I've been taking Avonex since then. My condition is stable, 12 years with no relapses.
I have had MS for 15 years now and I have tried 3 different DMTS with horrendous side effects. I don’t and won’t try anymore. I’m too scared. It was so bad that it was worse than anything MS had affected me so far. I have been doing diet, exercise and cannabis. I haven’t had a bad attack in years.
Wow what were the side effects you had from taking DMTS?
I had bad side effects as well. I won't take any at all. I try to watch my diet & exercise when I can. I have had no new issues, bit still suffer from all the muscle spasms Extreme & random Fatigue, & pain. I was diagnosed in 2006. I used the MS drugs for the 1st 3 years. I do take muscle relaxers. I see people on MS drugs that are worse off than me. So, I don't see the incentive. Just my opinion for my body. Yah will do the rest.
It's wonderful that these disease-modifying therapies exist, however, the elephant in the room is the cost. The pricing on these therapies is obscenely expensive, with the most recommended therapies costing several thousand per month out of pocket after discounts and insurance coverage. According to the National Multiple Sclerosis Society, as of February 2022, the median annual price of a brand-name disease-modifying therapy was close to $94,000 a year.
Thanks! 🎉 I was diagnosed three weeks ago, after my first really big attack. I had some smaller before, but nobody ever thought it could be ms. Having the appointment with my neurologist at the end of this week. I want to hit hard and early. ❤
Choose lemtrada ur best shot i cant cuz its not available in my country
I’m so proud of you!!! You have got this! If your neurologist isn’t interested in doing any medicine or just doing the beginning level medicine, I think Boster would agree, find another neurologist
If there is anyway to get into an MS Specialist like Boster, that changes everything Good luck! Keep your chin up and know that the understanding and ability to slow down disability progression have come a thousand miles.
I have had MS since 16, 25 years ago
I spent 18 years taking lot s of MS DMT
It wasn’t until I met Boster and did Lemtrada, my MS wouldn’t slow down. I had dozens of lesions and now am over 7 years with no damage anywhere. No lesions. No worsening atrophy. That was unheard of when I was growing into my MS life. But now, my friend with MS, had no disability 7 years ago, newly
diagnosed, and since she did lemtrada with me, she has also had no new damage. I just can’t imagine these hard hitting drugs being around before my mind and body fell apart. I was in a wheelchair when I began lemtrada but was able to go to town, and use The MS Gym in Facebook and the website themsgym.com and get out of that wheelchair and I didn’t stop working til I could walk unassisted. B
I just hate the thought of someone with MS starting in injections and other drugs that just aren’t up to par
I hope you rock it and slow , stop this crap
The last thing I’ll say, the thing that I swear would have changed my disability projection and slowed this down and lived a life that would have been different is COLD WATER. Cold showers working toward ice baths. Just hang in there and research them anti inflammatory aspects of coke water. I’m not the same person I was before I took the dive into coke water daily. Loved a life od 15 years of back and joint problems that would have never happened if I’d been doing coke water
Take care!!
Be strong! The meds for MS are very effective. I was diagnosed 20 years ago, and here I am, living with quality. Don’t be afraid!
Which meds have you been on?@@adrianasandy868
@@adrianasandy868This made my day. This M.S. crap has made me live scared.
“Go hang out with your three kids.” 😂
That is so true I have two kids and believe me they motivate me for my vasectomy next week.
The earlier you start a DMD the better.
It’s like putting on your armor- in a life long battle.
🤘🏻💪🏻 28 years of armor wearing- MS ass kickin and going.
Preach it Doc!
#SharingisCaring
Thanks Dr. B - When I started Ocrevus just over a year ago, I felt my symptoms go silent about 3 months after the first infusions. Very thankful for these new DMTs and upcoming BTK inhibitors. I'm hoping to make the switch to reconstitute my immune system. I had a cold last week that lingered for a week (first time sick on Ocrevus), yet my wife fully recovered in 3 days. Before Ocrevus I was rarely sick, but I'd recover very quickly if I did get sick. That's been my only downside to Ocrevus so far and I will be even more vigilant in trying to dodge covid and the flu going forward.
I hope one day you'll make a video to talk about autonomic dysfunction. Everything I read says it's not common in MS but my very first REALLY bad relapse was when lesions formed on my pons. A whole host of things began at that time; swallowing difficulties, heart rhythm problems, BP irregularity, neurogenic bladder and bowel, and digestion problems (slow motility and slow emptying). As I've aged, these things have all slowly gotten worse. I had autonomic testing and it didn't show severe disability, but it has really slowed me down. I'd love to hear you talk about this subject.
Oh I really wish there would be an episode in autonomic dysfunction.
Need to hear these comments,like yours!!!Your symptoms are mine!~Bless you for commenting here. My autonomic Postural difficulty is the worst- And the Gastric troubles. Thankx So much…Can’t find a decent dr.but getting to appointments are So so difficult anyway & im older so low compassion found.
Yep! I find myself asking the same question. I have PPMS. I was told to go on Ocrevus. I asked, "will this reverse my symptoms?", answer NO! Since it will not reverse my symptoms, my career is over, my fitness goals are over. Not that I am giving up, I am setting new goals. But I am realistic, things that I have studied for and trained for years are no longer possible. Example, years of education and a degree are now worthless. I used to be an avid hiker, training to hike the AT (Appalachian Trail). That dream is now dead. I guess the only point in taking medication is to stay out of a wheelchair. But most of these drugs have dangerous side effects. With all due respect, how am I winning? I have PPMS. I have attacks 24 -7.
Cool video my friend. I’ve had MS for 8 years. This video is awesome for ppl who’ve had MS for a while and very good for explaining things to ppl just dx! Thank you for helping us 🫶
excellent doctor. My wife gets to visit Dr Boster for her biannual infusions. and you get to have his dog River come check up on you while you're at the facility.
Hi doctor! I did give you thumb up and I do subscribe. But 5:40 was a bit worrying. I’m from Sweden and Was diagnosed with MS earlier this year at 44 years old. I’ve probably had ms for at least 14 years without knowing it, because that’s when I know half of my face got really numb and I didn’t bother to go to the doctor to look it up. So I’ve been told that i have more than 40 lesions in my brain and the medicine I’ve been given is Rituximab infusion. I’ve taken it twice this year. However what you say in 5:40 is not very hopeful in my case, but I’m thriving and I hope I can be the exception to what research shows. I’ll have faith in God 😊🙏
Thanks a lot for your content and work.
I'm 23 years old, your videos help me a great deal. I'm on Kesimpta, i was on Aubagio before this. I need a cane nowadays, i have a combination of bladder issues, retention & overactivity. I struggle to hold myself up & walk places a great deal. I wasn't like this before Aubagio, the leg attacks were old, I thought I healed and it creeped back onto me and hasn't left for over a year now. I feel tired all the time, I thought with "RRMS", there'd be more remission in the remitting nature of the name. What a scam. I'm very disappointed with this new life I must lead. God is a jokester.
I was on aubagio for 2 yrs and felt like I was slowly being poisoned. How do you like kisempta? I know it is different for different people, but trying to make a decision is tough. I know I don't want Ocrevus or Tysibri and I can't go back to Copaxone since I have had MS for 30 yrs and my spine is involved. Thank you ahead for any insight about the med you can share with me.
I have watched most of your videos. While they’re all fantastic, I found this one most helpful. I’m untreated due to horrible life circumstances beyond my control. I’ve been convincing myself that I don’t need a DMT. This explained why I actually do. I still can’t take it until I’m settled again but this really helped me. Much appreciated ❤
Many of the medicines have co-pay programs to help cover or mostly cover the cost of these expensive meds. I take Ocrevus infusions every 6 months and it works great. Good luck!
After many years with PPMS my Dr. Is finally suggesting a treatment medication. Wish I had started treatment 5 years ago when I was barely effected. 🙏
Thank you Dr Boster awesome informative video - I definitely agree we need the hug and the DMT! Hug back 🔥🔥❤️🔥🔥🔥
Absolutely!!
Hi from Israel this video summarizes shortly the most important idea that good treatment is very significant to MS patients hoping to have a medicine that will cure the disease thanks dear doctor
My DMT (Ocrevus) has slowed progression for me IMO. I am very thankful for this treatment and my previous neuro for getting me on it as soon as I was diagnosed. I just had my 12th infusion. Thank you Dr. Boster for all your videos. They have definitely educated me on MS.
How long have you had ms? Does your insurance cover O?
Thanks dude. Youre a good dude 🤘🏼
Very helpful. Thank you.
I always appreciate your honesty and enthusiasm. Thank you.
Tnx for the info, I was dx in 2016 with PPMS - I'm on Ocrevus infusions and Fampyra but I use a plethora of herbal remedies as well - doing well, 2 flares due to Covid but I'm doing ok and returned to baseline quite quickly do, best wishes everyone, stay positive 🌻
Thank you very much for this video
Dr., thanks again! I’m in Europe, recuperating from a fall and experiencing the “crap gap” until my next Ocrevus. I’m so happy we have treatments available for MS. I’m totally committed to the treatment, and doing well. I hope people understand how lucky we are to have treatments available, differently than people from previous generations.
Great explanations.
A very important message, and incredibly well explained. Thank you Dr. Boster!
Thank you so much! I was trying to explain all this to my MS peer support group! You summed it up and explained it perfectly!
Thank you❤
Very good explanations! ❤
Thank you Dr. Boster for the explanation. I love the analogies. They make it much easier to understand. Happy Thanksgiving to you and your family.
Thank you I so love and need your advice.😊
Thank you Dr Bostor !!
I had to go back to an older MS med because I had bad reactions to a newer one Doing what I can to fight this monster
Thank, thanks from Lebanon
Thank you. I have recently been diagnosed with MS. I had my first clinic today and we decided to go hard with the meds.
Thanks so much. I always enjoy your videos. I’ll get to a live event eventually! 😊
Doctor Boster, thank you for always providing positive and honest communication on your channel! This year, I started with Mavenclad after being on everything ranging from the original A, B, Cs to newer therapeutics after them. Your videos have not only incouraged me to continue the path of my treatment but given me hope that there are still doctors that practice their "calling". May God continue to bless you and your staff!!
Hello from Australia. Thank you for the education
I've been on mayzent for 5 months! Everything is going well! Thank you for this!❤❤
Thank you very much!!!! This video came at the perfect time my wife got diagnosed in July in TX and she was just saying why should I do Ocrevus it's not going to stop it and you are a blessing. And the treatment is helping a good change in her moving . Thank you
After Copaxone, Tecfidera and ocrevus, I was switched to mavenclad. I finished the 2 years of that 2 years ago and haven't had a relapse since and I'm not on any ms medications since.
Thank you for the great information Dr. Boster you deliver it in a very entertaining way🙂 I had a ms diagnosis earlier this year and started Tysabri infusions. So far so good 👍
Haven’t been leaving messages lately but you’re the best. Just wanted to say that.
I was Dx in 1997/98 with PPMS. Never had a relapse but with type relapses don’t happen I’m told. Thanks Doctor I understand more and more from your videos 👍
Thank you
Hi Dr B. Thx for info re thinking of my MS dmts as insurance. I've had MS for about 20 yrs now and seem to be rather stable at current age 53... Not cured of course but fingers are crossed and I can live with this "quieter version" of symptoms.
Thanks so much Dr B for the nformative videos 🤗
thank you
Cheers Aaron, Ireland MSer signing in
Thank you for the information. Always helpful to remind myself of the reasons that I take Ocrevus. Doug coffee in hand from Lyndhurst Ohio.
Soaps, shampoos, conditioners bother us because they have lots of allergens. Soaps are especially bad because of the steric acids they use to harden soap. Steric acids used to be harvested from animal sources, now a days they are from soy.
Thank you for another informational video, I highly value your videos!
I was wondering, what is the reason you became interested in the topic of MS and decided to specialize in it?
Thank you, Dr. B! Whats your opinion on supplementing things like Glycine, NAC, Taurine,... 🤔🙏
I was diagnosed in April 2004 - almost 20 years ago and I'm still walking and riding my horse thanks to these medications!! When I was first diagnosed I was on Rebif. until Tecfidera came out and I love it! I take one pill in the morning with my Ampyra, and one at night. No shots.
Thank you! This was one of your best presentations. I am going to forward this to friends who ask me why I am taking DMTs when there’s no cure for MS.k
Hey Dr.B 👋🇨🇦🇨🇦
Dr boster, Thanks for your videos. Can you explain why people may have flare ups (>24 hrs) after dmt infusions e.g ocrevus?
I was diagnosed in 2009 and my neurologist at the time described my lesions as like a Christmas tree. I had a lot of lesions I went on tysabri for 2 years but stopped as my risk of PML increased (by a small amount) once I stopped I sourced LDN through the internet. I then moved into a neurological care centre. I started going for HBOT.
where do you get LDN on the internet?
If there's a doubt if meds work, look at the highly active group. I went from an average of five dramatic attacks a year to *none* in the past two. MS sucks enough without letting it run unchecked. I trialed meds until something worked, on Kesimpta now and I love it. Stable and much recovered, it's nicer being able to walk and function.
May I ask, how was your walking before the medicine? Thank you
спасибо доктор!
U vas yesth skleroz? Vi prinimayete kakiye to lekarstvo?
How about possible remyelinators that may come in the future? That can possibly repair the damage and regain lost neurological reserve.
Good video. I was dx at 18, 20 years ago, I recently have been back and forth thinking why do I need these meds. I remember the guy I see at the gym with MS and he stopped meds years ago. He can't hardly walk and has frequent flares. I know I need medication but with the side effects of the iv meds I'm not sure if it's worth it. I have always tried to be the healthiest I can be, I don't want to cause other health problem esp cancer.
My neurologist put me on Rebif mostly because after looking at the gage of the needles in the syringes I was shown, and the first two gauge was very large, so I went with Reiff. Since then he has switched me to OCREVUS because after about 18 years I was getting worse.
I really want to have a consultation with dr. Boster. I live in Aruba and I may come to Ohio next year. But I don't want to wait with my questions that long. Pls pls pls
Hi , thank you for all your help , I live in Toronto , do you have any Nu. special in Toronto ? thank you
DX in 1986 in the UK, have never been offered any DMT's. It's been 'wait and see' alll this time.
You explain everything so well. I like how you make everything so much easier to understand.Thanks so much.
You are quite welcome!
Can you please talk about M.S & MOG?
I haven't taken any since February, I dread being even more tired, and the employers do not understand as it things are now much less when I take meds
Hi Dr Boster, thank you for the videos. I am currently on Tysbri and my Neuro told me after three years (being on Tysbi), the time in between infusions is changed to six weeks. I dont recall reading anything in the literature about a change from four to six weeks nor i don’t remember being given a rational for the change. Is this common practice?
I wish there was a DMT affective for PPMS. I had 2 years on Ocrevis with no effect so my neurologist ceased it. Now I have no treatment options available.
Curious if you mean “no effect” that your progression of disease continued?
Doc, can you make a video about dangerous sports? (by type of videos) Because my PC went just because of the rollers (I was riding like that as a child and fell with my tailbone on the curb)
Never been given any DMT. PRIA always for 34 yrs. Slow progressive. Now secondary progressive for around 10 yrs.
I felt like my insurance and doctor had this approach why bother with medication unless I significantly progress into vehicle chair state.
I was diagnosed in 2016, had my first big flare up and I’m recovering slowly. But my right leg and is weaker. Spacisity is a part of the problem but deep down inside I know my right leg will never recover
I have CIS so I don't have spots in the MRI but almost all MS symptoms for a couple of years. I can't start any DMTs because I can't get medically diagnosed.
Thanks Doctor I have ppms and take ocrevus. After 3 full doses I am not seeing the symptoms being stopped. Should I do anything different or keep continuing ocrevus
I wish we could have an informed video about DMT. The hole on the wall example is good but misleading and incomplete. DMT take care of what caused the hole, and prevent from new holes. But impact our ability to keep the house clean and leave the door open for external factors or even invite unwanted guests, which in turn may speed up the destruction of the house.
For example I wish we may discuss
1) dmt's long term effects are widely discussed, but what about short term effects? Is there any DMT with positive effects on our daily life?
2) we discuss a lot about the power of slowing the disability progression. Can we also discuss about the side effects of taking DMTs? this would be paramount in taking an informed choice
For example. I've been diagnosed in 2017. I didn't take DMTs but started to sleep well, had a good diet and exercised. After seven years I had zero new lesions in my MRI and no worsening of my EDSS. However, I admit to had experienced a degree of PIRA. I decided to start a DMT after 7 years. Well, after six months of Tecfidera I had 4 new spots in my MRI, and an attack that affected my mobility.
I think we need more informed details about the DMTs we take
Hi 👋🏽 and good morning, Can I ask a two part question, I sometimes choke when I drink water or any liquid. Not all the time but it will happen at work or having dinner with my family or if I drink water in the car . I’m 38 , will that get worse as I age? Also what is that symptom called. Thanks, I also want to say I love how you care for folks who are dealing with this disease thank you for your content. Much love and Happy Holidays to you and yours.
My is Andre by the way
Boster has to be very careful what he typed on line. For most of us, if we have an MS diagnosis, it’s called dysphagia. But becasue there is a chance it’s something else, Boster can’t diagnose a symptom g
Have you had trouble swallowing for a while? That such an awful symptom that those without it, just can’t understand. Hang in there ! Yes it can get worse with age, but mind has improved 500% over the last ten years 😊
It sounds like aspiration or dysphagia. Oddly, I'm 38yo, diagnosed this year, never had aspiration until 2022...food, drink, pool water. I still don't know what's up- just told I probably have lesions on the part of the brain that controls swallowing. Finally got a barium swallow test ordered, but it's not scheduled. Try that, perhaps, and maybe you'll have better luck
I have multiple sclerosis I have so many questions I just don't know where to start Are you in new jersey
Dr. Boster im pretty sure my family doctor will be referring me to a neurologist soon should I mention you to him?
Hi Dr., I have I have multiple sclerosis and I use Cannabis. I have not had any new legends whatsoever doing 11 years I’m 62 years old.
Have you ever been on any DMTS for MS? Which cannabis you take?
Hi Dr B , I was diagnosed 3 years ago , I'm now 56. I live in Belgium and will begin ocrevus in March. Is it worth it at my age .
Do you have any thoughts on trt studies helping men with MS
When I went to a new doctor because my neurologist stop seeing patients, my sister and went a doctor in Owasso, Michigan. He told me that what saw based the latest MRI didn’t suggest MS. I am going back to my him doctor after I get another MRI. In my lifetime I must have had 35 or so. Apparently what was seen suggested a stroke rather than MS. Maybe there is a link to never having mono in my life and maybe I could have one of the conditions that closely resembles it. I just don’t know what to think. Living your best life is sort of cliché when you don’t know with certainty what you have.
Is avonex a good MS medicine to take? Is it just as good as others?
Just watching and I was a past patient during beginning of COVID unfortunately insurance and other fumbles made me move onto Riverside and now I’m at UC bc of move back yo hometown. Ocrevus I believe has impacted my dental health snd curious if any others have poor declining dental check ups
Feel free to re-establish here in clinic! 614-304-3444
I've been misdiagnosed for at least 8 years, but if I think in retrospective, there might have been some symptoms as early as 2012/2013. I have a high lesion burden - brain, brainstem, spinal cord. I have been fully functional until diagnosis - 2023, September. It was a severe relapse that led to my correct diagnosis. Now I'm either in a new relapse (since 27th september), either transitioning to progressive phase. My legs feel stiff, I'm tired, heck, I couldn't use even the hands, and when I tried to speak with my healthcare provider, the only thing she had to say is that I'm probably in depression. Therefore, I took Methylprednisolone (Medrol) 16 mg and it seems to help a lot with my symptoms.
I'm now on Kesimpta... but I don't know if will have any effect, being diagnosed this late...
Do you include stem cell therapy in there too?
I think the new DMTs ARE actually magical Dr.B. I’ve had MS for 22 years and now compared to then…. Night and day. Magic!
Hi Dr. Aaron, please answer this: i had 2 relaps 1 year each and i fully recovered. Do I have MS? Plus I wanted to share something I read: lesions are not the end of the world, the body will find a way to reconnect and make it work.
DMTs are a must!
I am on the fence because I have only had two significant episodes in 10 years and I am 50. I am concerned about the side effects being worse than the symptoms. It’s so difficult to decide.
Have you ever been on any DMTS for MS?
My question is if it not ms, what other conditions mimic ms? What if mri of the head and spinal cord is normal, but something shows up in the csf ?
Currently struggling to find a working DMT.
I am learning about "crap gap" with my First Full Dose of Ocrevas.
And I'm pretty sure I'm experiencing an exacerbation.
Started with Tecfidera, then Copaxone. Then changed Healthcare and retried Tecfidera under a separate provider. Experienced Extreme Flushing and itching. Then experienced allergic reaction to Glatopa, not once but thrice! Insurance then covered Copaxone and felt fine-ish for a couple years. Just for my MRI's to show significant damage....
Riding the border of JC-Virus, thus considered a risk for PML, so my neurologist has me on Ocrevas.
I'm trying to not lose hope, remaining responsible for my health. Water and walks, sun and vitamins.
I would say I'm eating healthy, but it's the holidays... 😅
Can this start at childhood i has unexplained weakness at 9 years old ??
Why does nobody talk about PPMS ? It seems to be all about RRMS . Are we a total lost cause ?
PPMS is a lonely place in the MS world, especially if the MS is aggressive. I rarely see info about aggressive PPMS.
@@cherylvl1036 I have aggressive ppms
Seems so yes
I'm a pretty healthy person and it definitely appeared. A funny recovery is how when I scratch the top of my right foot, my left pinky twitches uncontrollably lol
A bit worried here. I just figured out a few weeks ago that I have been experiencing MS symptoms for 48 years. I can trace it back to a likely spinal cord injury when I was abused at 5. I know this isn't provable, but I did see that some lawsuits have been connecting these injuries to MS, and that is exactly about when I noticed weird things, that all turned out to be MS symptoms. I was never checked out and my complaints ignored or brushed off as not real.
I have had some major ones, starting around 20 and then gradually increasing and often different. The latest, I haven't ( and my doctors haven't) been able to figure out why, for the past 3 years, I can't get out of bed, do normal things, think well, walk well, uncontrollable tremors, etc...until I learned what MS was. Now, everything I have ever had problems with makes sense.
I get an MRI next week, but I can't find a neurologist that will take medical assistance anywhere close enough for me to get to. They are all too full. Is this normal? I was told to go to the ER instead and see the neurologist on call. This doesn't sound like much of a plan. I'm worried I may be pretty far damaged already.
What can I expect after suffering attacks so many times, for so long? Do people normally go 5 decades with no serious problems? I worry I figured it out too late, and I'm angry that my doctors missed every clue that I gave them. (face paralysis, frequent fainting and vertigo, temporary vision loss, constant itching for 22 months, severe lassitude, every type of migraine, a-fib and more...) At least my current doctor agrees with me, but she missed it too for 3 years. I was put on clonazapam and anti-depressants and a beta blocker that GIVES me a-fib if I take it late. I don't take the benzos and I am weaning off the anti-depressants, didn't want them to begin with.
That's a lot of questions, so if I can be pointed in a direction that may help answer my questions, that would be great! Sorry for the booklet...
My doctor as a rule doesn't give most meds to people over 60, because he says that the risks outweigh the benefits. What are your thoughts on that?
I am not a doctor. I think everyone has to decide what's best for them. Weigh up the medications and the side effects before you decide. All doctors have different opinions too.
Hi are you in NJ ??
He is in Ohio