Are You Making This Mistake With Your MS? Discussion With @themsguide
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- เผยแพร่เมื่อ 1 ต.ค. 2024
- In this video, I have a frank discussion with @theMSguide about a hot topic in Multiple Sclerosis. He recently published a MUST WATCH video on his channel, and we need to talk about it.
WATCH Dominic's video "Find out how your doctor's ATTITUDE to RISK affects the QUALITY of your MS care?" • Find out how your doct...
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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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Thank you both! I was lucky to have a Dr or MD (Mathias Grothe Greifswald) that diagnosed my with MS. And his point was to show the MS the biggest gun we have against MS. And so he gave me ocrevus. So far it worked out well. I am gratefull to him!
Hi Dr. Boster, When does the news letter normally come out? My first one I received July 18th but nothing yet for August. I found the first on in my spam mail so I checked every folder but nothing yet. Don't wanna miss a a thing...lol
is there some doctor from serbia.
Dr. Boster, you mentioned that most damage is done in the first 5 years. Do you mean the first 5 years from diagnosis? I am confused about this. I am 54 and was diagnosed with PPMS 6 years ago. However, I now realize I was experiencing MS symptoms in my late 20s that were attributed to other things. Where would you place the "five years of accruing most disability" in a medical history like mine?
This is also my question
At 73, newly diagnosed, but apparently living most of my adult life undiagnosed, I can attest to the ageism aspect with regard to treatment. Then again, one must realize that there are treatments which may be more harmful to this aged body than not. Shame is it's my body, and should be my choice whether or not to take the ultimate risk or any risk in between......my choice.......not my insurer's choice......not even my doctor's choice other than explaining risks and perhaps giving opinion on odds. just my personal opinion.
Dominic is right most doctors don't treat you like it is a serious disease, I am so glad you do. I think if my earlier doctors had been more aggressive at the beginning, I would not be where I am not.
I agree as I have had to fight my ms nurse and neurologist about this type of approach.
I’ve been following you channel for a long time. I’ve had MS for 11 yrs. Thank you for being so informative and kicking ass and taking names.
Misty
Great video Dr Boster. I have been lucky to have a great neurologist who has made it very clear that I should always (since diagnosis at age 27 in 1992) be on the newest, most aggressive treatment.However, I can no longer see her as she is no longer doing clinics at MS Society clinics. My biggest problems are with cognition and fatigue. I am still walking but have been diagnosed with breast cancer earlier this year which has been taken care of with surgery, radiotherapy and Hercepton.As you discussed, there was no hesitation in treating cancer immediately and I wouldn’t accept a similar response with MS treatments.Do you think that because the MS drugs are subsidised by our PBS(mainly paid for by our government with a $30 co-pay from patients) that we have increased access to these more effective drugs in Australia, compared to the US health system?
I meant that I wouldn’t accept a DIFFERENT response to MS than I would to cancer(oops!)
I am 45 years old. I was just diagnosed this January. I was seeing double and the ophthalmologist sent me for an mri. The neurologist I started seeing was an ms specialist. She wanted to immediately start me on a high efficacy drug. I have 0 disability and she wants to me to stay that way. So I have been on Kesimpta for 5 months now. With changing my diet and taking supplements and increasing exercise we are hopeful it will stay this way.
I was diagnosed last year at 52. I started on Kesimpta a month later. I want to know if K halts brain shrinkage. I know it prevents new lesions, but does it slow smouldering MS?
I went on my MS symptoms got worse plus I had more serious side effects from it. I was on it for 1 yr. I became u able to stand for more than a mi use and walking with 2 canes. After 4 days of skipping my shot, I could walk without a cane and almost all my new pseudo MS symptoms went away p,us the laundry list of side effects disappeared. None of my medical professionals were helpful.
I am glad, however, I went on copaxone right away after my diagnosis. Due to my age and disease stability, length of disease,I am not going to take DMT's anymore. For me, the side effects are worse than the disease.
I think the whole treatment process is sadly just very complicated. You get a diagnosis of a disease you barely know anything about and then you are confronted with 20 DMT's and don't know what to make of it. It took me two weeks just to read about what these meds do, the risk benfit and so on, and I'm probably in the minority. How to decide what's good for you when you are confronted with a field you know almost nothing about. It would be better to completely get rid of the self-injections except for Kesimpta. The tragic thing really is that you are going to be relatively healthy when you make the most important decision regarding the progress of the disease. Your neurologist likely won't be around in 20 years.
My doc wanted me on Kesimpta or Ocrevus as a first line DMT. My insurance company denied it as being too expensive. I had to write an appeal letter explaining I’m a young father of two and need to lead the best life I can as early as I can so we don’t have near as much progression. They finally approved after the appeal, and I am so grateful. Haven’t had any progression since I got on Kesimpta over a year ago.
My insurance company wrote me a similar letter and that after I already failed my first line of medication. I called my insurance multiple times to find out how they come up with their decision. Turns out the person who wrote the letter and tried to override my doctor decision has highschool education the most.
It is a full time job managing your own healthcare. Doctors keep sending you to specialists for symptoms of the disease, after awhile you feel like a ping pong ball. But, I will continue to find some solution to help myself endure this journey. Research is key, so keep on
trying to find whatever works to help with managing the daily challenges!
I was diagnosed 2017, had two rounds of Lemtrada for the following two years, no disease activity since and I forget I’ve even got MS now. So thankful I had a highly effective treatment early on
So agree with you and Dom, - as I said to my NZ neurologist when he was on the fence about putting me on a high efficacy DMT - “You can’t undo brain damage!!!” He was silent for a moment and then agreed it was probably appropriate to put me on Natalizumab 😁. I was so lucky to come across you channel Dr Boster so I was informed and empowered to ask! Hugs 🔥🔥🔥🔥🔥
#StrongerTogether!!!
I love watching your channel, doctor it's very informative and very helpful with the symptoms of multiple sclerosis
Gawd, I feel so damn torn now listening to this 😢 I'm 44. Was DX in 2008, tried rebif, then avonex, currently tysabri (just had #125 yesterday). Due to pml risk neuro is switching me to Mavenclad in a cpl months. But from what I understand Mav isn't even as good as Ty. Several lesions in the brain, but most are in brain stem/spinal cord. Ty has kept me 'mri stable', but I'm absolutely terrified of possible future progression by switching meds. After watching this, I don't know whether to just go along with Mav or if it'd be better to push for Lemtrada or what to do grrr.
Yours is absolutely the best approach Dr Boster. I wish that the U.K. nationwide would catch up faster.
Some regions take your approach- others are still using the “catalogue approach’ I.e, they produce a large leaflet with all the MS drugs available, method of treatment, efficacy on relapse rate, side effects, etc
Then the patient who is already in shock at their diagnosis is expected to go away and make choices!??
If they’re fearful of injections (most people) they pick a pill even if that’s not the most efficacious choice.
Some areas even have a first Line, second line, third line so you have to choose an interferon/Copaxone/Gilenya when diagnosed. Then have to get new relapses/lesions before you can have Tysabri??
It’s utter madness Doc
And my RMS course from age 17 has been very like yours Dominic & I feel lucky too tbh
BTW Prof G has always been WAY ahead of the curve, first to talk about Smouldering MS in the U.K. My personal inspiration xx
Thank you both SO Much! You are such a breath of fresh air. I did LOL with that comment about a cancer diagnosis. But can I add something - that softly softly approach is sometimes combined with the 'Severe Rapidly Evolving' letter with no context or support. It is terrifying, and even more so when it's followed by no treatment plan. I will never forget that moment. I had to fight and fight for my son to get Mavenclad. Thank you for all you do!!! ❤
Thank you for watching! #WeHaveMS
Fascinating discussion and lots to think about. Thank you both.
It took my family doctor 5 years to refer me to get a specialist to check my symptoms and after seeing a neurologist another 6 months to get an MRI and finally a diagnosis so early treatment was not really possible.
Hello Dr. B. Another very informative video. I was diagnosed with MS in December 2023 at 62. They proposed Mayzent whereas I asked for Lemtrada. They laughed me out of the office. I then asked if we could discuss Ocrevus they said no because of my age so in the end we settled on Aubagio. I've been taking it since April and so far so good. Blood pressure is up but not yet in the danger zone. Same story for liver and kidney enzymes. WBCs are at an all time low. I've modified my diet and try to exercise everyday including housework in my gym schedule. I asked what would happen if I have an episode while taking my DMT. They told me they would take me off it. Period. It's a bit scary so I'll keep my fingers crossed whilst living my best life. 😊
I was stuck taking Avonex, then Gilenya, then Aubagio, AND THEN Lemtrada... I can barely walk between rooms without being short of breath and in pain. I'm so upset with the healthcare I've been given. Wishing I was given Lemtrada FIRST.
I was diagnosed in 1996. My neurologist said we were going to wait since all the DMT’s were so new and he didn’t trust them. It was years until I got started on something. I’m 55 years old now and have to use a scooter. I often wonder if I’d been started on something, immediately, if I’d be this bad now.
i la la la love this converstation lol my docs have told me since they first found my lsions in 2009 that my my is benign or mild .... and even though I've only have a few small growth of my lisons and one new spinal cord lsions they still say I'm mild and in 2021 landed needing a cain and my whole ms jouny switched from what i dekt with before ..... part of it was the numbness in my right leg that I've felt since 2009 eventually become really bad and spread to my left side .... how is this mild i understand somepeole have more lsions pop up or are more active lisons but like you said i was worried in 2009 aboutlanding in the cane cuz of the feelings as i put it felt like they were about to not move ..... in 2021 it became the reality ..... how is that mild and dismissed i have said this since i started this journey it doesn't feel mild .........and I'm still shocked that i went most my young adult years thinking i was gonna be somewhat ok becusei was told so much my ms was mild nothing to worried about even now my nero tells me we shouldn't worry till you have 10 lisons .... with him i went from 6-7 lisons to 8 lsions but lets keep waiting to worry till im at 10 ..... thank the universe tecfadera become to hard to take and i got the spine lison or i woudlent have been able to switch to ocruvus he even asked me if i had been taking my tecfadera corecrly as a way to prevent me from switching i have never understood that standered practice of minimizing our illness and not realizing that the older we get the more the symptoms we have get worse not to mention new things form new lisons weather its one or many ..... one is to many
As someone who is currently at the mercy of mutual aid medicine, the best I've been able to do is request patient assistance from the manufacturer. I WISH I had the Mavenclad or Lemtrada option, but the best I've managed is Tecfidera > Vumerity (after the former went generic I was forced to switch to the latter).
Thank you for your valuable input. Will seek out those options as I'm able, in this capitalist hellhole of healthcare in the USA.
Awesome! Thank you both for your voice and insight into the MS world. Living with this bullshit for 24yrs things are starting to show and it's frustrating but your insight is so comforting! appreciaappreciate
Wow. My first MS symptom was a year ago and was a transverse myelitis. Doctor said it probably wasn't MS, and wouldn't give me anything. Went back 6 months later and had brain lesions. He very reluctantly put me on Copaxone. Now I'm just starting in on some spasticity, and I'm really afraid that it's just going to get worse. I'm 52, and he thinks that I'll never have another attack. So scary. I want to stay functional.
Sounds like you need a new neurologist! Good luck.
Same for me, but it was 1994. One damaging lesion on sline, nothing on the brain. Never had a DMT until 2021 when mri showed multiple brain lesions. I could only imagine how different my life would be had I gotten treatment as a prophylactic/preemptive move.
Love to hear what you would do if you had MS Dr B. Thank you for sharing that. I’m 61 so lots of this is water under the bridge for me 🥺, but do believe “that ship hasn’t sailed”. Fortunately my Dr knows how to work the US insurance industry and got me to Tysabri early after diagnosis and I am grateful. I do wish I could not think about MS all the time. I’d love it to be boring but, two years in, I’m still learning, and mostly from you.
This is a great segment. Such a pertinent and true point. I was started on a progressional process when first diagnosed and later, with a different doctor, moved to “the attack it with the most effective med now” approach. You have helped me learn so much over the past 5 years, since diagnosis in 2018, at age 40. My greatest gratitude ❤️
I wish I could turn back time and treat aggressively from the gate
Was diagnosed at age 28 in 2008. Only available meds at the time were copaxone and interferon. For all of you long timers you know those involved needles only. My Neurologist, luckily for me was very adamant I start immediately and stick to it. Besides the constant pain from my first few attacks on my c spine I’m still doing well and am very grateful to no longer have to use needles as part of my treatment.❤ Best wishes and God bless you all and yours.
Are you on another non-needle DMT now?
Started Mavenclad a year ago, aged 61. About to begin year 2 in two days.
This is why I like having you - an MS Neurologist- teaching US ( MS’rs) and new neurologists as well- because times HAVE changed- the more science 🧬 & medicine advances- ( now at a more rapid speed) the better more personalized care each of us can receive.
This can ONLY HELP us live the best Quality of life possible.
I’m on board.
This was a great informative discussion with you & Dom.
#SharingisCaring
#StrongerTogether
#MavencladMILF
This video has given me a lot to think about. I considered myself one of the lucky ones to be put on ocrevus straight off the bat but now I’m questioning if I should advocate for myself for lemtrada. The thought of lemtrada terrifies me but the thought of not keeping up with my son terrifies me even more
Thanks for this, just when I thought I had made peace with my decision here you are again. I’m 64 and still standing and I’m not sure that needing a beer and 3 Advil to play golf warrants lemtrada, but I’ve been on LDN for 7 years with no new lesions but have had flare ups in the last 2. I’ve made it 20+ years this far. Thanks for making me think about it
what is LDN? thank you for this reply.
Well I've had MS since I was 15 and I'm now 62 with no visible disability, but an overload of lesions in both brain and spinal cord. I have been having certain problems for a while which I have 'ignored, for a long time. I'm now about to start Gilenya and I'm terrified. I'm still very active, and don't want to lose that. I have put up with bladder problems, fatigue and numbness from the waist down for years. It takes a long time to get going in the morning. I now realize I need to do something, but my disease progression has been slow so far.
Oh and is it normal for a neurologist to say 'ok we"ll start you on Gilenya before changing to Ocrevus because we need to check if you're not early stage PPMS?
Following Dominic now. Thank you Uncle B
Im am so pleased to have listened to this . Both Dr Boster and Dominic have made some very important points . I for one will definitely be more pro active in liaising with my Doctor / neurologist in the hope they will consider putting me on something ( anything) to help me with my newly diagnosis of secondary progressive MS . Thankyou
I love Lemtrada. I almost have "benign" MS but I was starting to fall apart living about a half life after 16 years under my own risky drugless ways. I went trough a 9 month gambit to get it FIRST after many many years of consideration and study. You are exactly correct. I just needed to be perfectly poor in income and rich in knowledge and family but not to much and highly educated enough and wildly persistant enough to get the drug for free in the US around my insurance and lack of extreem wealth. It's not impossible if you can tollerate it. It's a miracle drug in my opinion. A drug discovered before I was born in the late 80s. It was like a parade at the hospital for my first follow up after Lemtrada. Im already getting ready 5 months out for the 2nd treatment.
Do you think an MS nurse who coordinates care and wellbeing could also conduct some functional testing between neuro visits? Such monitoring could assist in more regular screening / targeted self management and care. Also, patient led functional testing at home, with the support of an MS nurse could also assist in flagging decline or when additional care, treatment / support is needed.
It's possible YES
I realise this isn’t one of your ask my anything MS related video but can i ask a question ? I was aggressively active rrms and had betaferon ( never worked and very quickly developed antibodies) . Then tysabri when it was brand new then gilenya . Now spms and on mayzent (siponimod in U.K.) . Is it worth taking ? Does it help , and if so how ? I no longer get relapses but progression is happening without a doubt . This is the only drug available in U.K. for spms . What am I missing out on that may be better and available in USA for spms .
I was diagnosed at age 54 because I was struggling to walk, which started suddenly after being in a roll over car accident. My Dr put me on Rituxin immediately. I haven't had any new lesions, but the progression hasn't even slightly slowed. My daughter was in the same accident, but her brain MRI shows no lesions. My fear is that she may have lesions in the neck or spine. Her doctor acts if he is paying for the MRI and won't order the other spinal areas. A Dr thought I might have MS when I was 38. They did a brain MRI, and there were no lesions. So I got a pat on the head. Is it possible to have neck and back lesions without any in the brain? Is there any other way to determine definitively whether she has MS? I so worry that it'll be dismissed until she gets to my level of disability.
It all scares me. I had a left temporal lobectomy at 16. I was diagnosed with MS at 24. I have been on Tysabri for 9 years. While the MRIs are stable I can feel and notice the decline. My drs don't want to switch me to Ocrevus. :(
Yes irreversible brain damage is such a true statement. I started on Rebif and was so active I was hospitalized for plasmapharesis where I coded.
Blessings on your continuing dedication to teach & share “M.S. Truth”.
🧡🧡🧡
Diagnosed 7 years ago PPMS and because my symptoms were so mild was never put on any medications due to risks, I’m 67 now and symptoms are much worse and only now are they proposing treatment with Ocrevus. It’s frustrating because these medications have been around for ages and I was lead to believe they were new and full of risks.
Hopefully treatment starts in the next week or so.. 🤞
Hey Doc, I'm seeing a Dr. In OK. city for my MS. When I go in to chat with them, twice a year, it seems like I'm just there to chat.
I'm currently on Rebif. I was diagnosed 04/2022 but I think that I've had this since I was about 10, 1980. I'm currently in a study at Hope Biosciences. I've had my last infusion but I have two more appointments March and June to complete my portion of the study, just paperwork, no more infusions.
I don't work anymore.... can I come to see you, or can you refer me to a like-minded doctor in my area?
Brilliant video, thank you both
Thank you!
Thank you doctor for sharing your knowledge with us. The best point is that the more I follow your videos the more I get confident about my medical board. It makes me hopeful. I've started believing in my medical board because I've heard them saying the same as you do since last year when I first got diagnosed in a miserable condition. Thanks to you and to them too. From India.😊
@Aaron I would love for you to destroy / break down the Dutch healthcare approach to MS. I spoke to two neurologists who REFUSED to put me on ocrevus despite me asking and talking about the most recent Scandinavian publications showing this is what we should be doing. In the Netherlands they always refuse to start with high efficacy and always start with medium / low drugs. This has caused me a LOT of stress. I want to get high efficacy drugs but am not allowed. This is absurd. I have to now wait around till i get "worse" before they allow me to take drugs that perform better. Sick. Great content Dr. Aaron as always :)
* to add to this is is very malicious as perhaps I may be doing "ok" for quite some time on medium efficacy drugs but the accumulated damage over time adds up / compounds rapidly. So perhaps yes I will have fewer relapses but it every additional relapse I have is perhaps completely unnecessary .... The dutch healthcare system also only monitors lesion activity. Nothing about brain atrophy. Recent publications say that these can be independent factors that should be weighed when deciding treatment. An entire avenue of monitoring patients is missing from the dutch healthcare system.
these rules apply to all EU countries - I doubt you can "skip" first-line dmt's. there are reasons (debatable, but nonetheless serious) why they all agreed with this approach. for Dr.Aaron is ok to talk with his real pacients about alemtuzumab during first discussion; but it can't become a general rule anytime soon.
I think the other issue is the MS will look like other illnesses. For me, I started falling when running in my 20's. I dusted myself off and resumed in 2 weeks. In my 40's, it reared it's ugly head and I got the official MS diagnosis. I have been on meds since then. I have RRMS. I am lucky most men get progressive MS. I am glad my neurologist hit me with Avonix (horrible f-ing drug). I am on the "pill" now. 🤣
I hear you. But I am crying right now, because isn't it different for everyone? And aren't you risking irreversible changes if you hit hard with immunosuppressant drugs? I am especially worried in my context - being JCV positive? My goal is I dont want to be the 1 in 50,000 that gets a lethal brain infection! Will you be doing another live stream anytime soon?
Thank you for this AMAZING and informative video!! As a person with MS, I totally agree. I was on Plegridy for 5 years and had a great run at the time. There was no Ocrevus at that time. I'm on Ocrevus now. I wish there were "bigger guns" during my initial diagnosis.
My experience has shown that doctors, for the most part, can’t deal with patients’ emotional reactions. They soft pedal instead of telling us the truth at the beginning, because they don’t want to deal with our emotions or don’t know how to. I wish my family doctor, who was also my godfather, had still been alive when I was dx’d with any of the illnesses I have to deal with today. He would have learned everything he could about it before sitting down with me in his private office, sitting next to me on his old, leather couch, and explaining it to me as kindly as possible without hiding anything while holding my hands in his and offering his shoulder when needed. Medicine lost too much when the old guard of family doctors died. I’ve only had one doctor even remotely like him since he died 50 years ago. That doctor understood that I had a poor quality of life and was actually willing to talk to me about it. And that was before I learned that I had MS in addition to the Meniere’s and migraines he addressed.
I’m 67 and the MS continues to advance. You don’t age-out of the disease.
Omg I wish Aaron was my neurologist. So true everything that’s said. I’m 54 though it was strange menopause symptoms but then told highly active MS . I’ve been put on Ocrevus. It took a little while as unfortunately I was diagnosed in lockdown! So I have some disability but it’s definitely halted as my neurologist hit it hard 🧡
I wish Aaron was mine too. In canada. No activity on past 5 annual MRI s so all good. Yeah !! But no don’t get DMTs if no activity So ??
I am uninsured and can’t get any medications approved thru assistance. My quality has drastically gone down the drain the past year. Having a sensitivity to medications makes it hard to find anything to help rather than make it worse. It is completely frustrating.
Very informative! I'm actually going through this exact self-questioning now. Dx with radiologically isolated syndrome at age 60 and doctor wants me to start with Aubagio. I like the idea of thinking about what my future self would be telling me to do. Thank you for opening my eyes!
Well Doc, I know that this is 5 months later but here we go.... How about our heart rate? It's electrical.... I swear that it is an issue.
Why would you dr boster choose lemtrada over ocrevus…first? Think i heard that right
So true and spot on. A lot of the practitioners are just so beaten down by insurance and the limits and steps for the formulary they have in place.
Thank you for this. Had my diagnosis 3 months ago privately and just waiting for my 1st appointment on nhs. I want to get started on treatment asap, so I keep pushing. Thanks so much for your videos, they help a great deal
Agreed about Tumours, as they found an 8 ball size brain tumour, while looking for MS, that was removed during COVID lockdown as fast as possible.
But with my MS, it took awhile to have a talk about MS DMTs.
I currently on Kesimpta however, I was told repeatedly you know this is a high efficacy drugs right? My answer was yes I understand and know but I want to hit MS hard!
How long have you been on Kesimpta? Do you like it?
You are a great help Dr Boster. I had a Neurologist say to me, "MS doesn't much change at your age..." I changed neurologists & now get ocrevus; it has been greatly helping.
And you think you can live your whole life without b-cells?
I (probably) had my first MS attack when I was mid 30’s-so around the mid 1990’s. The MRI at the time showed no lesions so it was ruled out. Fast forward to 2018 when it became clear that I did have MS (after my 2nd attack)-I used Mavenclad immediately and have had no relapses since. I feel as if DMTs were so ineffective in the 90’s that it almost doesn’t matter that I had no treatment for 20+ years……
Why do you think interferons and glatiramer are ineffective? With interferons for example the proportion of patients using a wheelchair dropped by 65-85%. I was on Betaferon for five years and I didn't have any lesion or relapse, no progression on EDSS and no brain volume loss. Before I started I had six lesions and a horrible relapse. The new DMT's aren't miraculous, plus can cause cancer, opportunistic infections or additional autoimmunity.
My story is very similar. All I can do is move forward and hope Tysabri will continue to help me.
I was diagnosed at 24
Have taken Avonex, Gilenya (had rebound effect when coming off of it- causing 7 new active lesions at the time), and have had two rounds of Lemtrada with small progression two years after the second round. I'm now 36 and I'm due to begin Kesimpta. Lemtrada allowed enough quiet time to have two children.
I am unsure of Kesimpta.
Thank you, really grateful to you always 💫
Thanks heaps. I no longer feel I have taken a wrong turn figuring out what DMT to take. If it is too powerful as the neurologist said" killing a fly with a hammer".
Thank you both, I'm so thankful that I saw this.
I hate the wait…1st brain MRI lesions months after Spine MRI lesions I think, next step lumbar puncture still waiting for diagnosis all this started because I thought I had early unset dementia, listening to you Dr. Boster cog fog , depression but no diagnosis yet . Not a diagnosis I want but when I was told “possibly MS” I felt relief but still no diagnosis. I am so frustrated waiting knowing I need to get treated but I’m waiting while my brain turns to mush or I’m on a wheelchair, or I’m blind my newest symptom I feel not dizzy but unbalanced adding to my depression plate smh
Yes hurry up and wait it seems
Interesting discussion thank you.
I was diagnosed at 24
Have taken Avonex, Gilenya (had rebound effect when coming off of it- causing 7 new active lesions at the time), and have had two rounds of Lemtrada with small progression two years after the second round. I'm now 36 and I'm due to begin Kesimpta.
Lemtrada allowed enough quiet time to have two children.
I am unsure of Kesimpta.
Gotta keep fighting!
Thanks you two
Thank you for reminding me that I am in the best stage of life (33 years old) to combat this and make a difference now, before 30 years down the road when things may be much worse. It's like drive the car now, not leave it in the drive way to rot hoping it'll still run in 30 years.
Awesome video !!!!! So uplifting 🙌 Thanks 😊
You are so welcome!
Thank you so much for such an informative video. My daughter got diagnosed 1 year ago and was prescribed Tectidera. She will be changing now. Please tell me if it were you, MAVENCLAD OR OCRIVUS?? She can’t take kisempta because she travels too much. PLEASE give me your thoughts.
Fab video, I enjoy listening to Aaron & Dom for all things MS, it’s so amazing to hear a neurologist saying these things as in my experience they do not want to commit to anything! They want you the MS patient, to make all the decisions… (in the uk anyway) and when you do even after relapse while on a dmt, and you ask for stem cell referral, your told you can’t, which I know is very difficult to get on the NHS 🤷🏻♀️ it’s just a never ending battle, living with the disease & on the doctor side of things.
Bless you and thank you. You can’t reverse the damage. Move fast and fix the problem! Why wait?
Easier said then done it took me 3 Drs to finally explain the incomplete peripheral ring lesions as having 3- Tumefactive lesions. What’s worse they have tagged me as switching Drs! I cant even change Drs even though I have documented proof as to why I wanted to change. They don’t care and that is unfortunately my story. If I could see Dr. B I would in a heart beat but I have yet to find a Dr like you! I put my faith in Gods hands now because I’m sick of the incompetent Drs I have come across. I even had one ask me if I understood a procedure after I explained he said “You sound very educated are you a Dr” I said no but I did my homework like every patient should do and with the help of your videos I was able to add 1 + 1. I thank you for all your videos but problem is you Dr. D are maybe 1 in a million about the odds as me having TMS at 50, 1st sign ever left side numbness out of no where(Feb 2020, landed Dx, couldn’t Dx MS unless I had a LP, finally did, came back with 4 - O bands, 2 years later to find out blood was never compared, demanding a new one only too come back with only 2 O- Bands…
Do you know the 2nd Neuro had the audacity opening line say “ just want to make sure your not on your 3-4th 2nd opinion”! WTH is that I am so disappointed I could vomit! My GP could do better and the last time I told him.. I told him I am on a fine line and just say screw the neuros and you can treat me better(which by the way I love my GP dearly been with him for at least the last 15 years.
It’s all just sad if you ask me!
Please keep doing your videos and I pray you know how much they mean to all of us!!
People study for degrees in their 70s and 80s and 90s. At least SOME of the brain can rewire as we get older. So - backing off on MS drugs with age is ridiculous.
Sure, if antiCD20s are a bit harsh then Mavenclad might be a good way to go. But deciding NOT to treat because someone hits 55 or 60 - how can that ever be justified?
What about high efficiency meds later in MS... secondary to progressive my neurologist has me on abagio n I my MS is now in that category. And my experience was exactly what you guys are talking about
Neuro said there’s nothing he can do for
My progressive MS. He dumped me.
Doctor, could you make a video about NFL exam , if it's worth the cost and how it could impact on newly diagnosed and medicated patients?
❤️ this topic guys
Thank you Kathy n Douglas!
You go Dominic!!!!
Yay! Dominic is such a relieable person to listen to for people with ms and he is so spot in that conversation with Dr Boster.
MS like any form of chronic condition that is bad IS a serious CONDITION and for some people it might require MORE ATTENTION to adress especially from the start of ms diagnosis.
Thak you for that video Doctor B.!
:ove your videos, so educating! Unfortunately in Ukraine, we don't have many options besides Copaxone right now, and even this med will be available for me in a few months (diagnosed this May). Planning pregnancy, so it works for me well now, but I practically feel regretting it in a few years later(
Thank you for this video. My doctor put me straight on Kesimta, which my new insurance company is fighting until I "fail" low-moderate efficacy drugs first. This is great fuel to keep appealing to get the high efficacy treatment.
I spoke with a friend who has MS a few months ago who said she had aged out of her medication and was now in need of a wheelchair. 😢
Awesome as always👍
Thanks again!
3 mins in and I'm chanting yes yes yes yes - ha Neurology in the UK eh - once diagnosed 14 months ago I was hopping about like a crazy thing to get my DMT started - I was the biggest pain in my MS teams backside - I drove them nuts - GET ON WITH IT - HIT ME WITH THE STRONG STUFF - GIVE ME THE NEWEST STUFF - STOP THE ROT NOW!! I badgered and badgered them with 'do you treat cancer like this', 'my brain is being damaged whilst we are talking' statements. Oh I'm getting annoyed just thinking about it again! Anyway eventually my Kesimpta arrived and it's all good, the service is excellent but boy it took some determination to get there.
Yes that is the feeling I have too It’s not a game to start slow and wait and see. Get out the big guns and start now.
Awesome 😎 love that you both got together to chat! Ty Ty!
Glad you enjoyed it
@@AaronBosterMD I did! 🤗 Love that your both willing to talk about MS is the way it should be talked about! Often I think us with MS are scared off to take a DMT and too often MS escalates.
I facilitate the MS Canada Chapter in my area and I see this often.
I thank both of you for speaking out and about MS!
This whole video makes me feel like crying. Why? Unfortunately, it’s because of the system of healthcare that we have and the schema of insurance. Let me explain: even if we want to take the most powerful medications to prevent or eliminate the MS or disease progression, many people choose what is fiscally managed. I can and will advocate for myself; however, should one’s disease cost so much that you have to be concerned with the ability to either get the treatments, or pay bills? Even people with good insurance have to worry about this. The cost of MS DMTs is so expensive that insurance companies don’t want to pay it, even if the person has a “normal-esque” life because of them. What’s left is what they make the person pay, and often we cannot afford it. I know there are some programs to assist with these costs, but the programs can only help so many people.
To say that I’m terrified of what this disease will do is an understatement.
Yes the ocrevus I am taking 30,000.00 a bag. I had to tell the nurse doing my infusion not to toss the bag around as it is costly. In canada I now have been offered dmt cause of new lesions on brain after 5 years of all good. Now 63 and 8 years in finding it all overwhelming and no one knows much.
I have PPMS and my brother had MS. He was diagnosed in 1987 and he was not having a lot of symptoms so he did nothing. He was rediagnosed in 2005. I don't believe he ever took any treatment, because he wanted drugs to make him better. He should have known better since my mom had MS when there were almost know good treatments. Make sure you take this serious! It is not fun to be in total care, because you didn't take this disease serious! My brother was total care at least the last 10 years of his life and my mom was in total care by my dad for the last 20 years of her life.
I am currently on Ocrevus and have foot drop with very little progression since I was diagnosed in 2015. I know that could change, but I believe that better treatments are coming in the next 5 years so you want to stop or slow progression now!
Volume for Dominic is a bit low, hard to hear
ive been on tysabri for almpdt 8 yearz
Wow! Thank you.
You're welcome!
Hi from Israel thank you dear Dr for the interesting points keep going doing this
Thanks for watching!
Always full of good information
I would like to follow this gentlemen but what would be his uputube channel?
link to his channel is in the video description
❤❤ ShareShare!
Sharing is Caring!
Well, yes, due to the fact that STRONG drugs for MS have not been tested on children, I am in the terrible condition that was described at the beginning of the video (in a 30-year-old woman)
P.S. I am currently 20 and was diagnosed not even by a neurologist, but by an ordinary optometrist.
After chasing the cause of dramatic worsening of astigmatism with optometrist and even seeking for lasik surgery and even seen by neurologist we were diagnosed by ophthalmologist!!!
Me too my optometrist sent me for the MRI and all kinds of spots lit up. Docs question it asking if it was because of the use of street drugs like cocaine. WTFF hell no
I've ignored it since I was first DX. I didn't know it was real and knew no one died of it. I was crazy wrong
I certainly do.
A friend of mine brother did, said it was complications from his heart. He was in a home to take care of him. I met him before he was wheelchair bound
Do you do phone consults?
ROAD TRIP!!
My neurologist said to me the same day as my official diagnosis: " It's not that bad, it's going to be ok, many of my patient work, go hiking, surf, even weight lifting!" 2 years from there... I'm bond to my crutch and I'm ambulatorie wheelchair user... I'm in pain all the time and nobodie would know how my ms would turn, not even her, why being so light? " It's no big deal!" Yeah it is and you can't down playing the risk!
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#StrongerTogether
Dr Boster, the vast amount of what I know about MS is from watching your videos. They are absolutely brilliant. I may not be a patient of yours (I'm not, I live in Liverpool England!) but I have benefited so much from the information you give out. I have learned to self advocate which may result in me finally getting put on a DMT. However, it appears that the MS Neurologist that is treating me does not agree that DMT's can slow down progression which is very disappointing. Thank you for your hard work. 😢
@AaronBosterMD
43 male, diagnosed this last December - 4 lesions on the brain, and 2 in the spine. Neuro said it was "mild" MS, and prescribed me Copaxone. At my 6 month follow up my prior lesions had faded and I had 6 new active lesions. Another run of steroids, and now I'm on Tecfidera (Neuro wanted me on Aubagio, I pushed for Kesimpta, so we "settled" on Tecfidera). @AaronBosterMD thoughts? At this time I coach U11 soccer twice a week, I walk daily, jog 3x a week for at least 30 minutes, and I'm trying to stick to dairy/gluten/corn-free diets that focus on whole foods.
this might be digging too deep into my dad's MS but when he was in the thick of it - 25, 30 years in- he was and I was told that dmt's wouldn't work on him because he had progressed too far. What you mentioned @AaronBosterMD about doctors being able to intervene. Do you think my dad's progression could have been slowed down at that point with dmt's? I know you didn't know him personally and there is a host of details. But just wanted your thoughts. thank you! :)