I am a healthcare provider, I watch your videos regularly and also ask my patients to watch them. I get practical advise from you to help them with their daily living.
@realpeaceofmind I just want to tell you 👏🏻 good for you! I think that you are taking time to increase your knowledge and, everyone can benefit from that!!
I’m tired of fighting for the basic care from providers. I’ve given up. If they don’t care, I don’t care. Just tired of chasing doctors and offices for the basics. 12 phone calls to get an MRI scheduled is ridiculous. Never did get scheduled. So forget it! Maybe next year.
@beckymoran321 Don’t give up on your concerns with your treatment, it is your life that you are living! Keep trying to get what you need done! You owe it to yourself!
Try searching some private mri scanners. I was sent to private one because hospitals are full almost all the time and it was a great idea. They are opened almost nonstop, so I could get it on a weekend or at 6pm for example
Important points that are clearly born of wisdom. I wish you would have pointed out the lack of humility and humanity that is so prevalent among your colleagues. I'm sure you read your comments and see how often your subscribers use the word "afraid" when talking about their neurologist. As in, "I'm afraid to ask my neurologist about..." "I'm afraid to tell my neurologist..." Educating people living with MS is super important. It's just a crying shame that so many doctors seem to feel that they have learned everything they need to know and are above needing any more education. So much of life is subjective- but feelings, fears, and frustrations don't seem to register on most doctors' radar. You would do MS patients a world of good by educating your colleagues about human interaction and the importance of LISTENING to and BELIEVING their patients. But I understand why that would be a tall order. The vast majority of them really don't care. People always advise that, as a patient, you have to be aggressive and fight to get doctors to do their job. Well, I taught elementary school for many years and no parent ever had to come to school and fight with me to get me to teach their kid to read. That would not be a thing. As with almost every other job in this world. But not doctors. Why? (As always, these comments do not describe you, Dr. Boster. You are a hero.)
My care partner once accompanied me to my follow up by the 'mean' neurologist, and commented afterwards that these people aren't coming to her because they're having an easy time, and that in the same amount of time and for the same price, at least she could have been nice. 😢
OmG all that's so true. I saw doctors privately here in Ireland. They were bullies and wouldn't treat me after hsct. I am 15 years in and only now I am on a hi tech dmt (just started)when I fought to see a compassionate doctor. My spasticity is progressing. HSCT really helped me but didnt past 3 years. Too late for me you people in US have it better by far as you are offered medication and choices and chances on tysabri with jcv baclofen pumps etc my husband having tests and biopsy so stress is huge which is impacting. Life is too hard. Dr Boster is great I told the neuro I was dealing with about him+😇
You really described a prominent and relevant problem and issue!! Your comparison to being a teacher was directly relatable! Why do we have be “afraid & fight” for what we deserve when we are being treated? This attitude of Neurologists who think that they already know all & everything that they need to know is antiquated!! I wish that all MD’s could look at this and possibly see if they fit into this picture or not. And if they do, make some changes to their selves.
Doctor Boster, thank you for this video! Thank you for having enough humility and humanity to have risen to the level of being a fantastic MS Doctor! I think you taking the chance of “pissing off” other Neurologists shows that you are not only a caring Neurologist, but also by far a caring HUMAN! Thank you for putting this out there for others to see! My Neurologist is pretty good. I do have a complaint though. At one visit I said something about your channel and that I thought you were very helpful and knowledgeable. I asked my Neurologist if he had ever heard about you before (I’m in Illinois) and he said no, I commented that he should look up your station because you are so knowledgeable and helpful. I am guessing that either he forgot what I said, or he didn’t find the need to even look you up. For whatever reason, he didn’t follow up on my suggestion, which made me sad to know that what I said did not (1)seem important enough for him to take my suggestion or (2) he didn’t feel the need to look outside of his own “box”. Either way I feel that way of thinking is selfish and/or self-centered. To me, a person can never ever stop learning and there is always something out there new to learn about! Thank you for your willingness to demonstrate that both things hold true, and showing your willingness to address all of the issues that go along with having a diagnosis of Multiple Sclerosis!
Absolutely! Brain damage 20 years down the line is a whole different animal than when it initially occurs. I love my MS specialist because she has always been very good about explaining the risks of NOT treating MS, and she always goes over my MRIs in detail with me.
Back in the day before PACS and other image archiving systems, some doctors would be treating purely based on MRI report. There were people misdiagnosed for years and decades who never had an MRI with any lesion characteristic for MS due to some dubious MRI report. You make a good point about the follow up after relapses. I think treating relapses has been seen as less important in the modern era (as fewer people have relapses due to the advent of highly effective disease modifying therapy). But I still see people newly diagnosed or sent for a second opinion who were not offered steroids for a recent flare.
Wow! Just Wow! Thank you so much. This so needed to be said - and heard and acted upon - by both patients and neurologists / nurse practitioners. Any MS health practitioners feeling "p1ssed off" at what's said here: take a moment to think. How much does your anger and defensiveness say about your approach to patient care? What if you were the patient or their family? What if it was you having your symptoms ignored? Or your partner, parent or, god forbid, your child whose treatment was failing only to be met by a sympathetic shrug or outright gaslighting "that's not MS, your MS is stable, look no new lesions". I'm sharing the xxxx out of this video to those PwMS I know who are on the end of this kind of treatment, thank you so much Dr. Boster.
Having been diagnosed with MS in 2020, this and so many of your videos have provided so much insight into my disease and my care. I feel now more than ever I am in good hands with my neurologist. Sine i started going to the MS clinic my doctor has not only helped with my MS but has spent time getting to the bottom of chronic headaches. This is definitely something that suck. After my last mri there are new spots in my brain. Thankfully I haven’t seen much in the way of physical symptoms but there was a marked difference in my physical exam. Immediately we worked on a plan to change my medication. With a follow up MRi and clinic visit after 3 months. I am confident I am getting amazing care and hope for the best on the new dmt. Thank you for everything you do for the MS community
Can I add another “ mistake” by neurologists? Saying, “I don’t think that has anything to do with your ms.” My neurologist just told me my bladder spasms are not ms related and that it is “ physiologically impossible.” So I asked him as ms affects the brain and spinal cord, can’t anything the brain and spine control be affected? He said no, that’s not how it works. Mind you, I have as he’s told me “ a ton of lesions and it uncountable at this point.” I then went to ms society page and bladder spasms are a common thing with ms. Yet my neuro refused to believe that and said my bladder issues have nothing to do with ms, even though my urologist said, after lots of testing, it is my ms. Grrrr!
Relating very much to this. I am having the same problem. I went a neurologist few days ago and was told my severe heat intolerance is not uthoffs ,despite being diagnosed by multiple specialists since 2019,including ER in his own hospital.i was advised to record my symptoms through a variety of heat related triggers ,then showing myself reversing symptoms wirh cooling, amd repeatinf it daily to show it is consistant ,and repeatable every time. specialists who have seen it say it can't be more obvious,along wirh some asking if they can use it to show students .. I can't believe the neuro was hellbent on saying it ,so can't be uhthoffs. because the lesiions in my non contrast mri are in my frontal lobes ,and not in 4 areas he prefers. I can't believe when you have overwhelming symptoms pointing at those areas a neurologist will refuse Further testing. Some of us wait up to 3 years to see a neurologist .its embarrassing they go against everything other specialists have been treating you for , and not giving answers for why you would have loss of smell ,spasticity ,sustained clonus,lhermitte sign,urinary issues ,positive babinskis, ,hyperreflexia ??? He told me instead I had conversion disorder , which is ludicrous as all above are not seen in conversion disorder .he also did this before ruling our organic reasons for my symptoms with contrast mri,spinal tap,full neuro screen like seen Aaron's videos ,blood tests ,visual evoked potentials ,nerve conduction or muscle testing ...and so on . Worse experience I have ever had .I left wurh a referral to a psychologist to help me deal with trauma ,which will make all of that go away,including my genetic connective tissues disorders dislocations . 😅😅
Thank you for this ❤️ I am a patient of one of the best neurologist in my state. But whenever I leave their office, I cry in the car. Not bc I am sad that I have MS but because my doctor has never given me the time to answer my questions or educate me on vitamins, exercises, etc. that could help improve my life. It just feels very much like this is a business meeting and I’m not a priority patient (constantly checking their phone/pager). Thank you for these videos, I feel heard through you and I am always taking notes. You are a blessing to us all ❤️
Thank-you for another awesome Monday morning video Dr Aaron. On the subject of MRIS I've literally had to insist in the past that my neurologist go over them with me. Thank you again for the wonderful job that you do getting this information out to us each week😊
Nowadays it is great that we can share knowledge across the internet. Dont stop fighting, it is a long term thing. Modern neurology should treat you even after your 50s.
This is a great video. I live in NL, Canada and I have a fantastic neurologist who doesn't make any of these 5 mistakes :) He is so patient and really takes his time and actually listens to me when I describe what I'm experiencing and offers other follow-up testing to determine if it truly is MS related or he offers a possible way to deal with the symptom. Thank you, Dr. Boster, for all the videos you put out there. I love following your channel.
You are so blessed! I live in Vancouver BC, Canada and our medical system out here is JUNK. The wait times! and good luck trying to find a new or good Dr. My Neurologist is a lovely older lady who keeps me completely out of the loop and when I talk to her once a year over the phone!!! She tells me nothing, just my MRI is fine and she writes me another years worth of prescriptions. I feel so alone in my journey. I know there are really great ones out there like Dr. Booster but they are super hard to find here.
I am just about to relocate from Ontario to NL. My family and home are there. My neurologist retired here. She did these 5 items so hearing being back home might be better
I’ve learned more about my MS, and what I should expect from my neurologist, in the first three videos of yours that I’ve watched, than I have in the past ten years. I feel like I’ve been failed, but that I also need to take better control of my own health.
I am thankful that I found you Sir. My MS takes more damage the last year and the treatment in Germany is there but I see the difference of the knowledge how to handle all the circumstances. Best wishes to you Aaron
Hey Doc! I was wondering if you’d be able to make something on cognitive ability. A lot of people including myself lost intellectual abilities over the years with MS. Retention issues etc. wondering what to do about it. But hard to find much info. If you could cover this it’d be super helpful. Happy new years and thank you for all your amazing work. You’re a hero to us MSers
Saying that's not bad enough is for me one of worst thing doctor could do. I once said that I have problems with balance and doctor said if i can ride a bike it's fine? Also what seems really important is asking questions, cause I forget some symptoms I have or don't even know it's problem related to ms. Even after years of having ms I'm not sure if some symptoms are due to ms 😅
Yes. After diagnosis in November 2021 my neurologist said "We aren't going to treat you. You could try CBD for symptoms." I have got to the point where I blame everything on my CIS (MS). I plan to keep a symptom diary in 2024 for what's left of my own sanity. Best wishes to you.
I’ve been extremely blessed with my neurologist. She is always on top of the very latest research. She makes recommendations to me for treatment but she is respectful and supportive of my decisions. I trust her.
I read an article recently about a patient suffering with an autoimmune neurological disorder relating to the gut, and so many times the doctors downplayed their symptoms, did not take seriously when the drug prescribed didn't help much or caused serious side effects, and took a very long time to figure out what was really happening. So much suffering that could have been avoided if patient with multiple symptoms and serious drug side effects were taken seriously as you do!
I love this video adds clarity to how I feel . Diagnosed RRMS july this year asked my nurologist how many lesions I have twice and he won’t tell me just waits not the most he’s seen and certainly not the least very unhelpful, I don’t think he’d be happy if I asked to see my mri scans but I will ask him now for sure Thankyou Dr Boster x
Hello, I was diagnosed last July and am currently receiving care from Indian Healthcare and a major hospital (St. John). I am specialized in ultrasound servicing and repair so I have the flexibility to potentially relocate to where I will receive the best care. I follow your YT channel and have considered it a necessity for navigating this journey during such seemingly mysterious circumstances. I am really reaching out to possibly gain further information as far as establishing life/care in Ohio. I understand how crucial creating a healthy existence is in regards to improving quality of life and the sporadic climate changes in OK I feel are exacerbating spasticity and just the overall symptoms in general. I previously lived in Tampa, FL but the heat made it to where I had no energy a lot of the time.
My neurologist is 4 hrs away so I don’t get to c him as much as I would like to, so your videos are a huge help to me, I’m learning more & more watching your videos. Bless you Dr Boster keep them coming ❤️
Around 12 years ago, I had an mri to investigate possible MS. The neuro didn't discuss my results at all, and didn't advise me to come back at any stage. Here I am now with the high chance I will be diagnosed. I'm now having difficulty walking as well a long list of other symptoms. I wish I was able to be treated by you. You have utmost compassion for your patients. You truly care and also give 100% care. I'm in Australia 🇦🇺
Thank you!!! I’ve shared your videos to a recent friend who was just diagnosed with MS, given only a course of steroid, can’t walk and pain being managed with dilaudid!!! Admitted for over 2 weeks and only saw neuro twice!!! Oh and doctor reported in his notes that she was safe to go home…so she was denied to go to rehab!!!! It’s truly so disheartening!
Just diagnosed.. but i got a great neurologist.. discussed everything you mentioned and actually listened. Thankfull for free proffesional healthcare in my country.
MS rx 96 so been thru a lot. My neuro is great and works well with my PCP. Symptoms you described may come from MS but not always. This needs to be addressed as well.
I like my doctor.,.. but when I finally found an MS specialist and was referred and met him initiallly... he acted as though I already knew everything I needed to know... I told him my symptoms, chronic symptoms... and they try to treat them but ive hit a roadblock... No one really ever explained to me what to expect from the medications (all of them) how the disease would effect my body and daily life... not what to expect years down the road... And im still at a loss. Most of the info I find is online in MS groups and sharing what Im experiencing and if it is indeed an MS symptom OR something else... I live in Central Indiana and I love your videos ... I wish you were my doc! :) Keep up the good work!!
A neurologist I hired in Kyle Texas to review my MRI stood at our appointment, He reviewed my MRI and said its not MS. In response to my question, what could it be? He stood, Held his hand to his neck and said, I only work from here up, and walked out. I hate your profession
I can't catch a live (thus far) but A) thank you! I "knew" had MS 5 months before I could be diagnosed thanks in part to you and you made that process so much less awful than it was bc it was miserable. B) I'm a public defender in the largest city in state. I am scared a bit of B cell depletes bc of the population of clients I work with. My neurologist rocks but has concerns about Tysabri - sounds to me like she's worried it just isn't convenient and once a month is scary because I have trials regularly and family that is aging out of state. What ate your thoughts about being in a jail regularly in a B cell depleter and Tysabri and fitting it into a busy life. Thank you again!
1) Failure to treat soon and aggressively to avoid later deficits 2) Not sharing the physical imagery of MRI 3) Failure to recognize failures in therapy 4) Participate in therapeutic inertia 5) Failure to aggressively treat chronic symptoms
Thank you Dr B. All too often there is no time made to help with QOL, its a constant battle. Stable MRIs and no relapses is great to know but an MS person needs more treatment and recommendations as you mentioned.
I feel that as I live in Northern England, we are totally just left to get on with it. Thankfully I learn so much from yourself and exercise specialists to improve my own life ❤️ forever grateful! It is a shame that fhe neurologists and MS nurses at my UK trust aren't great. Currently in an argument about breastfeeding on Tysabri - have you done a recent video on this at all? I'd be very interested to see! I know that the RVI in Newcastle would allow it, and encourage it, but I've been told it's a definite no no and infusions won't be allowed if I choose to breastfeed, so I'm in a pickle! Sorry for the waffling hah 🤭
there finally trying to tell if I have ms I have these abnormal hesdachs alot of the day and they found alot of lesions so hoping my new nerolgist starts to handle things but here in LA people work alot slower so its stressful hopefully ill find out more , this is a great channel ❤ ty and happy new years .
Thank you Dr Boster, awesome video - so informative and empowering! I look through my own MRI. My neurologist only spends a few minutes on it and only if I ask. Love your dragon 🐉 🥚 😁🔥🔥💖🔥🔥
Great video! In the 9 years I've known about my MS, I have never seen an MRI, I'd just get told everything's stable or not, I thought not being shown the MRI was normal 😮 I have a new neurologist now so maybe that will change.
I watch you often. Perhaps complex multiple issues make it hard like bowel/ bladder. Finding doctors are difficult because they don’t educate themselves 😢. Could you try to empower us how to plan exercise with a visual as Medicare only does so much. Once a week is difficult as it is hard in a skilled nursing to support you. Also I am very glad you talked about QUALITY. ❤SPASTICITY and chronic foot pain. Thanks 😊
Dr.Boster, as a person with MS I just want to say thank you so much. You are such an advocate for us. Would you ever consider giving away “1on1 talk sessions”? I know you can’t be my neurologist since I live in GA. But it would be wonderful to have a chance to chat with you for 10 minutes and discuss if you think my treatment plan and life changes are the best options. I know you already offer so much of your time and thank you again!
Dr. Boster I have learned sooo much from you! From your tips, ideas and discussions, I require more from my neurologist. Just as he was moving his practice, I came to the realization that he was not the neurologist for me. Good guy, good neurologist, but not right for me. Thank you for all that you do to educate the MS Community
I can hear your passion! You must be taking care of a lot of patients that treatment was lacking. I have had MRI's for many years and not one of the neurologist I have been to have ever shown me one.
It’s important as a patient to speak up for yourself being your own advocate! Our doctors aren’t in our shoes or body 🤷♀️ I’m not saying be overly forward and pushy! Begin with ‘let me be clear’ signalling you expect to be listened to, then proceed asking for a conversation about YOUR health. Expect attention and dialogue :)
So THAT'S the problem: Where do you escalate to from Ocravus? One slug of steroids didn't do much to help cover the Crap Gap, and I wasn't interested in going back to Hadassah for another three. So I held out till the treatment on Chanuka, and now I'm STILL suffering unbearable (pun unintended 🐻) MS Hug daily, as well as the jumpy leg. And concerned as to whether this signals possible further damage down the line. Glad that the MRI is stable, but concerned that it's not gonna stay that way if I keep popping pills to shut off the pain! Hope you had a happy Chanuka, I sent the guys with the candles in hope that you'd light for the success of my treatment! Best regards from Jerusalem! 🕎
I feel your preaching to the wrong people. I have had MS for 41 years & am struggling with all of it. A quick office visit, I can't can't even explain how I feel ,it is everywhere inside ,I can still walk but the kind of life I have is not good
Im new to this, a doctor recommended to my husband and I that I get checked for MS. We live in Florida and r in the middle of moving to northern Florida so we just picked a primary doctor and gave him the letter of recommendation for MS. I have no other health issues besides Fibromyalgia and the typical getting old stuff. Not knowing anything about MS we did some research and noticed that many symptoms/signs are very similar to each other. The big issue in Florida is finding an honest doctor who WILL treat u for what u came for and not a source for just easy cash. Am i right about the similarities between Fibromyalgia and MS? Thank u for what u do and how much u r helping those who need ur help, u r very sincere 💖
Since after brain tumour surgery, my MS neurologist decided I only need to come in once a year, and I've been seeing the assistant. Was diagnosed same-day with both brain tumour and MS in 2021. My neurologist I am not even sure about him and he's also really well known in Canada, world renowned because of his work with MS, but I don't see him, so Inhave no clue. His assistant answers all my questions but alot of my questions do get down played and said well with you we have no clue of it's the MS or the brain tumour damages. I am often lost in what to say, and I do have fatigue and brain fog, but what should I do, get anxiety attacks, which I never thought was even that I also don't see my brain tumour neurologist who did my surgery (see his residence students) but this I understand as he's doing brain surgeries. Figuring out how to navigate for myself, is a huge challenge because of both what I have. So I thank you for your videos as it helps me know what I should be having with my MS side of things.
I'm 5 and a half months on Ocrevus, and now I am having a new attack. According to my neurologist, it's too early to decide that it isn't working and that I should try it for at least a year. What is your opinion?
Thanks for explaining this. My MS neurologist will always discuss my MRI, showing the images while talking about it. She's always open to Q&A. Whenever I have relapses, she'd go over the MRI with me to discuss whether it is pseudo relapse or a major relapse, taking into account the findings and what I've been doing (maybe too much exercise, etc.). If it's my EDSS increasing with my SPMS as well. We're doing a lot more together and she's giving a break while pregnant so I don't get breakthrough activity from really bad fatigue (she's aware and shared how mine is highly active).
I really wish our neurologist could help me as a caregiver know what is coming. My person with MS has a lot of comorbidities. Previous heart attack-3 stents, ishemic stroke a year and half ago. Even before stroke, vision challenges (depth perception for sure- stopped driving 3 months into diagnosis.) Last year eye issues went to becoming legally blind. Tunnel vision, no peripheral vision. 12% aquity in one eye, 15% in the other. Getting hearing aids soon due to hearing loss more so in the left ear. Depression, GAD is being treated with medication and therapy. Aphasia has lasted well past a year and half post stroke. Diagnosed with a cognitive communication deficit. Impairments in Attention, Visuospatial skills, clock drawing, Language- all mild, while executive function is moderate. Memory was WNL because they think it is due to lack of attention, even though he tells me that he can't remember what he is going to say. Expressive aphasia, naming issues. Communication is difficult, in speech therapy once a week. Uses electric wheelchair anytime we are outside home. Can walk very short distances. Very short, shuffle steps. Has a torn labrum from a fall last year. Class 4 risk for surgery, so just trying to Rehab it. Has had home health 4 times in between original MS diagnosis and Stroke. The OT/PT believes he has declined significantly each time a new consultation to be seen by them is given. Insurance will not pay for maintenance therapy. Since diagnosis, just a steady downhill slope. First MS neurologist - said 13 mm lesion on thalamus and saw old and new lesions. Tumefactive qualities and fulminating track was what was told to me. He is on Rituximab. New lesion on T6 now spotted. Motion Artifacts on every MRI- he moves constantly in spite of diazepam pills for MRI. So far, due to his comorbidities, doctors believe Rituximab is the safest medication he can be on. Diabetes, CAD, sleep apena, A fib, obese and so much more. He really doesn't want to try to help himself by changing the things within his control. As a caregiver, dementia is very concerning. Every doctor tells me, he is a "special" case. Never seen someone with so many medical issues. I am sure this contributes to not being able to give any timelines. He is very blessed to be alive. He just turned 49.
I would say 1-3 have not been followed by my neurologist. She has been really good with 4 and 5. So we’re slowly getting there. Thank you for the advice!
I’m stunned. With the exception of the second item on the list you are the first doctor I have heard or experienced from or with anything you have mentioned in this video. My neurologist does show me my annual MRI at my next appointment with them 3-6 months later. When they do show it they have it on the screen next to the previous one and they compare the two pointing out any changes. No words are spoken about shrinking brains or anything else you just mentioned. I didn’t even know that it is possible for a brain to shrink. I just last week discovered that Gabapentin is known to cause dementia. Until 6 months ago it was one of my main medications. The only reason for the change 6 months ago is that for the past 10 years I have spent most of my time stuck in bed hurting and unable to do much more than go to the bathroom or feed myself. I had a bad attack in June and out of desperation to find a way the change things for myself started to actively do research. I spend most of my days researching now. I am almost positive that there is not a doctor even half as good as you are within a days drive. I’m not really able to move from where I am so I am at a loss for how to find a solution.
a mistake is something done once ,, but when a 'mistake" is repeated, then it is intentional. why? lol doesn't matter why, because you can only change people when they want to change themselves! this gaslighting mode has crippled healthcare system in canada. good vlog A!
Thank you! I have seen my brain MRI but it has been a few years. Now, I haven't had a relapse since 2015 so I am not too concerned about seeing the MRI photos as they are not showing any changes. I struggle with the down there, as you call them, and my neurologist nor my urologist seem to be any help. Some day I will find the doctor to help. In the meantime, I keep Poise in business, pay attention to when I need to stop drinking if leaving my house, and just do the best I can.
(Diag Nov 2021) I could never understand why my Neurologist wouldn't show me and desc my MRIs. I did get them mailed to me on a DVD.... Images make no MS sense to me. Also, When I asked about investigating for brain shrinkage (2 MRIs), he said that only occurs at research facilities... I am out looking for a new neurologist now. Wierd... Younger guy. Thx Dr B
They don't show us the MRI or the report as they say that we wouldn't understand it. Which I think is ridiculous. It just makes 8s feel worse as it's though they are hiding something. I suffer from RRMS and have recently started on Kisempta. Thank you Dr Boster xx
I’ve not taken my Ocrevus since May 2023 because I called my neurologist incompetent because he kept canceling my appointments in November. But don’t worry Dr. B. I’m going back to my Arizona doc to receive care. 😂🤣😂
Hey Aaron, thanks for all your amazing content which has been incredible help since my MS diagnosis. Your advice has been invaluable. I wanted to know if you had a view on supplementation with NAD and BPC-157 peptides? I've seen/heard that they can help with MS. Thanks!
My neurologist said my level, 6.5 has no medication is available to help FIGHT/delay MS, ...WHY.? I wish I knew this when I was in denial. I love my neurologist but he is "closing up shop". He told me that I can come back to him for about another year and half then my regular doctor can prescribe any symptomatic episodes to help, Sad 😥
You make so much sense. My MRI is normal. So does that mean I don’t have MS even though I have spacitity. How do you know where to have the steroid injection? I have an appointment for one in my neck as I have cervical spondalothisis and straight neck.My chiropractor and neurosurgeon said it hasn’t reached my brain. I am trying to avoid neurosurgery. Doctors just don’t address my problems, they don’t have any answers. I am frustrated.
Hi Dr. Boster! Thanks for sharing your knowledge, I like your channel a lot and brings me peace of mind! I am 34 yr male and got diagnosed with RRMS a couple of months ago and had my two infusions with Ocrevus recently. Walking with a cane temporarily. What is the probability with Ocrevus to develop PML if this is my first time using DMT? Thank you kindly, Allah bless you
Hi..im on Betaferon since 2013 and recently Bayer in Greece decided to stop it from the market..im negative to try the newer treatments due to the risk of cancer (i have a past history of breat cancer) ...so i made an apply to get it from abroad...although i have the secondary ms and i have a 80 % disability, as a doctor myself im not willing to risk havingg serious side effects from new drugs ....whats yr opinion?
I have secondary progressive MS through the years its been dollar coaster over 20 yr. I've never seen you speak of Cad or MSa I do have lupus srogens a long listen autoimmune desease. Lesions are located in the areas that can cause this CAD. But expirencing many others. I would truly like to hear your thoughts on this issue. Sincerely Dawn.
Thank you so much Dr. Boster, you are the absolute best! Following what you mentioned about new attacks under a certain treatment, does the appearance of new lesions in MRI tell doctors that the actual medicine the patient is taking is not working and it needs to be changed? Greetings from Argentina!
Thank you so much for another informative video. May I ask a question for a future live stream. I have weakness in my left arm which gets much worse in the heat. Would exercises to strengthen the muscles help ? I am guessing its permanent damage and if nerve related that strength training wouldn't work anyway? Thank you so much.
Hey doc, what do you think about Plasmopheresis for MS patients? I am 43, diagnosed 10 years ago, currently on Kesimpta but Edss keeps worsening (already 6,5-7) Thank you!
I’ve asked to see pictures of my brain ever since I was diagnosed with ms one year ago, but my neurologist doesn’t seem interested in showing them to me. Don’t know why. The nurse said it won’t make any difference if I see them. But I’m I would like to see where in my brain those more than 40 lesions are located. I’m thinking that would be valuable information, thinking I would understand myself better regarding my cognitive functions. Because I’m always frustrated and blaming myself for not being enough.
My neurologist ignored my ongoing symptoms after prescribing DMT. I went back to follow up about ongoing symptoms. She prescribed pain pills but that does not address my specific symptom. I am getting a second opinion because she made all 5 mistakes.
You mention medications so often. I am curious how many meds your patients take, on average. Do you ever suggest something outside the box…more natural? I read a lot about anti inflammatory herbs. Would you recommend your patients see a DO along with seeing you? Forgive me if you’ve addressed this in previous videos. I’m fairly new to your RUclips channel.
My MS neurologist wants me to exercise for fatigue and exercise for cog fog. I mentioned more urinary problems- he thinks that isn’t related to MS cause I have children- although it wasn’t a problem until 6 years after having my last child. I only go there to get my Ocrevus ordered, which I’ve been on since my diagnosis in 2019. 😐
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I am a healthcare provider, I watch your videos regularly and also ask my patients to watch them. I get practical advise from you to help them with their daily living.
@realpeaceofmind I just want to tell you 👏🏻 good for you! I think that you are taking time to increase your knowledge and, everyone can benefit from that!!
Amazing!
I’m tired of fighting for the basic care from providers. I’ve given up. If they don’t care, I don’t care. Just tired of chasing doctors and offices for the basics. 12 phone calls to get an MRI scheduled is ridiculous. Never did get scheduled. So forget it! Maybe next year.
@beckymoran321 Don’t give up on your concerns with your treatment, it is your life that you are living! Keep trying to get what you need done! You owe it to yourself!
Try searching some private mri scanners. I was sent to private one because hospitals are full almost all the time and it was a great idea. They are opened almost nonstop, so I could get it on a weekend or at 6pm for example
Important points that are clearly born of wisdom. I wish you would have pointed out the lack of humility and humanity that is so prevalent among your colleagues. I'm sure you read your comments and see how often your subscribers use the word "afraid" when talking about their neurologist. As in, "I'm afraid to ask my neurologist about..." "I'm afraid to tell my neurologist..." Educating people living with MS is super important. It's just a crying shame that so many doctors seem to feel that they have learned everything they need to know and are above needing any more education. So much of life is subjective- but feelings, fears, and frustrations don't seem to register on most doctors' radar. You would do MS patients a world of good by educating your colleagues about human interaction and the importance of LISTENING to and BELIEVING their patients. But I understand why that would be a tall order. The vast majority of them really don't care. People always advise that, as a patient, you have to be aggressive and fight to get doctors to do their job. Well, I taught elementary school for many years and no parent ever had to come to school and fight with me to get me to teach their kid to read. That would not be a thing. As with almost every other job in this world. But not doctors. Why? (As always, these comments do not describe you, Dr. Boster. You are a hero.)
My care partner once accompanied me to my follow up by the 'mean' neurologist, and commented afterwards that these people aren't coming to her because they're having an easy time, and that in the same amount of time and for the same price, at least she could have been nice. 😢
OmG all that's so true. I saw doctors privately here in Ireland. They were bullies and wouldn't treat me after hsct. I am 15 years in and only now I am on a hi tech dmt (just started)when I fought to see a compassionate doctor. My spasticity is progressing. HSCT really helped me but didnt past 3 years. Too late for me you people in US have it better by far as you are offered medication and choices and chances on tysabri with jcv baclofen pumps etc my husband having tests and biopsy so stress is huge which is impacting. Life is too hard. Dr Boster is great I told the neuro I was dealing with about him+😇
You really described a prominent and relevant problem and issue!! Your comparison to being a teacher was directly relatable! Why do we have be “afraid & fight” for what we deserve when we are being treated? This attitude of Neurologists who think that they already know all & everything that they need to know is antiquated!! I wish that all MD’s could look at this and possibly see if they fit into this picture or not. And if they do, make some changes to their selves.
Doctor Boster, thank you for this video!
Thank you for having enough humility and humanity to have risen to the level of being a fantastic MS Doctor! I think you taking the chance of “pissing off” other Neurologists shows that you are not only a caring Neurologist, but also by far a caring HUMAN! Thank you for putting this out there for others to see!
My Neurologist is pretty good. I do have a complaint though. At one visit I said something about your channel and that I thought you were very helpful and knowledgeable. I asked my Neurologist if he had ever heard about you before (I’m in Illinois) and he said no, I commented that he should look up your station because you are so knowledgeable and helpful. I am guessing that either he forgot what I said, or he didn’t find the need to even look you up. For whatever reason, he didn’t follow up on my suggestion, which made me sad to know that what I said did not (1)seem important enough for him to take my suggestion or (2) he didn’t feel the need to look outside of his own “box”. Either way I feel that way of thinking is selfish and/or self-centered.
To me, a person can never ever stop learning and there is always something out there new to learn about!
Thank you for your willingness to demonstrate that both things hold true, and showing your willingness to address all of the issues that go along with having a diagnosis of Multiple Sclerosis!
A true caring relationship when neurologist cares as if he was himself the patient
Absolutely! Brain damage 20 years down the line is a whole different animal than when it initially occurs. I love my MS specialist because she has always been very good about explaining the risks of NOT treating MS, and she always goes over my MRIs in detail with me.
Back in the day before PACS and other image archiving systems, some doctors would be treating purely based on MRI report. There were people misdiagnosed for years and decades who never had an MRI with any lesion characteristic for MS due to some dubious MRI report. You make a good point about the follow up after relapses. I think treating relapses has been seen as less important in the modern era (as fewer people have relapses due to the advent of highly effective disease modifying therapy). But I still see people newly diagnosed or sent for a second opinion who were not offered steroids for a recent flare.
I personally am so glad to see that you are a Doctor who isn’t afraid to watch these videos to improve patient care!👏🏻
Wow! Just Wow! Thank you so much. This so needed to be said - and heard and acted upon - by both patients and neurologists / nurse practitioners.
Any MS health practitioners feeling "p1ssed off" at what's said here: take a moment to think.
How much does your anger and defensiveness say about your approach to patient care? What if you were the patient or their family? What if it was you having your symptoms ignored? Or your partner, parent or, god forbid, your child whose treatment was failing only to be met by a sympathetic shrug or outright gaslighting "that's not MS, your MS is stable, look no new lesions".
I'm sharing the xxxx out of this video to those PwMS I know who are on the end of this kind of treatment, thank you so much Dr. Boster.
👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻
Having been diagnosed with MS in 2020, this and so many of your videos have provided so much insight into my disease and my care.
I feel now more than ever I am in good hands with my neurologist. Sine i started going to the MS clinic my doctor has not only helped with my MS but has spent time getting to the bottom of chronic headaches. This is definitely something that suck.
After my last mri there are new spots in my brain. Thankfully I haven’t seen much in the way of physical symptoms but there was a marked difference in my physical exam.
Immediately we worked on a plan to change my medication. With a follow up MRi and clinic visit after 3 months.
I am confident I am getting amazing care and hope for the best on the new dmt.
Thank you for everything you do for the MS community
Can I add another “ mistake” by neurologists? Saying, “I don’t think that has anything to do with your ms.” My neurologist just told me my bladder spasms are not ms related and that it is “ physiologically impossible.” So I asked him as ms affects the brain and spinal cord, can’t anything the brain and spine control be affected? He said no, that’s not how it works. Mind you, I have as he’s told me “ a ton of lesions and it uncountable at this point.” I then went to ms society page and bladder spasms are a common thing with ms. Yet my neuro refused to believe that and said my bladder issues have nothing to do with ms, even though my urologist said, after lots of testing, it is my ms. Grrrr!
Relating very much to this. I am having the same problem. I went a neurologist few days ago and was told my severe heat intolerance is not uthoffs ,despite being diagnosed by multiple specialists since 2019,including ER in his own hospital.i was advised to record my symptoms through a variety of heat related triggers ,then showing myself reversing symptoms wirh cooling, amd repeatinf it daily to show it is consistant ,and repeatable every time. specialists who have seen it say it can't be more obvious,along wirh some asking if they can use it to show students .. I can't believe the neuro was hellbent on saying it ,so can't be uhthoffs. because the lesiions in my non contrast mri are in my frontal lobes ,and not in 4 areas he prefers. I can't believe when you have overwhelming symptoms pointing at those areas a neurologist will refuse
Further testing. Some of us wait up to 3 years to see a neurologist .its embarrassing they go against everything other specialists have been treating you for , and not giving answers for why you would have loss of smell ,spasticity ,sustained clonus,lhermitte sign,urinary issues ,positive babinskis, ,hyperreflexia ??? He told me instead I had conversion disorder , which is ludicrous as all above are not seen in conversion disorder .he also did this before ruling our organic reasons for my symptoms with contrast mri,spinal tap,full neuro screen like seen Aaron's videos ,blood tests ,visual evoked potentials ,nerve conduction or muscle testing ...and so on . Worse experience I have ever had .I left wurh a referral to a psychologist to help me deal with trauma ,which will make all of that go away,including my genetic connective tissues disorders dislocations . 😅😅
Thank you for this ❤️ I am a patient of one of the best neurologist in my state. But whenever I leave their office, I cry in the car. Not bc I am sad that I have MS but because my doctor has never given me the time to answer my questions or educate me on vitamins, exercises, etc. that could help improve my life. It just feels very much like this is a business meeting and I’m not a priority patient (constantly checking their phone/pager). Thank you for these videos, I feel heard through you and I am always taking notes. You are a blessing to us all ❤️
Good video Doc.👍👍
My first neurologist was so bad, it's too depressing to even try to describe.
Sorry to hear that
Mine aswell never explained anything to me :(O
Thank-you for another awesome Monday morning video Dr Aaron. On the subject of MRIS I've literally had to insist in the past that my neurologist go over them with me. Thank you again for the wonderful job that you do getting this information out to us each week😊
You are not alone with that issue, I have had the same experience!!
I wish I had seen this 20 years ago when I was diagnosid. Now turning 50 I am dealing with my poor choice to not take medicines.
Nowadays it is great that we can share knowledge across the internet. Dont stop fighting, it is a long term thing. Modern neurology should treat you even after your 50s.
This is a great video. I live in NL, Canada and I have a fantastic neurologist who doesn't make any of these 5 mistakes :) He is so patient and really takes his time and actually listens to me when I describe what I'm experiencing and offers other follow-up testing to determine if it truly is MS related or he offers a possible way to deal with the symptom.
Thank you, Dr. Boster, for all the videos you put out there. I love following your channel.
You are so blessed! I live in Vancouver BC, Canada and our medical system out here is JUNK. The wait times! and good luck trying to find a new or good Dr. My Neurologist is a lovely older lady who keeps me completely out of the loop and when I talk to her once a year over the phone!!! She tells me nothing, just my MRI is fine and she writes me another years worth of prescriptions. I feel so alone in my journey. I know there are really great ones out there like Dr. Booster but they are super hard to find here.
I am just about to relocate from Ontario to NL. My family and home are there. My neurologist retired here. She did these 5 items so hearing being back home might be better
I’ve learned more about my MS, and what I should expect from my neurologist, in the first three videos of yours that I’ve watched, than I have in the past ten years. I feel like I’ve been failed, but that I also need to take better control of my own health.
I am thankful that I found you Sir. My MS takes more damage the last year and the treatment in Germany is there but I see the difference of the knowledge how to handle all the circumstances. Best wishes to you Aaron
Hey Doc! I was wondering if you’d be able to make something on cognitive ability. A lot of people including myself lost intellectual abilities over the years with MS. Retention issues etc. wondering what to do about it. But hard to find much info. If you could cover this it’d be super helpful. Happy new years and thank you for all your amazing work. You’re a hero to us MSers
❤
Thank God you’re my neurologist and you make none of those IMO.
Rock on 🤘🏻
Treat on ⚕️
Great video
#Sharingiscaring
I am 60 have not had a MRI in 3 years,have kidney disease and no ms therapy
Saying that's not bad enough is for me one of worst thing doctor could do. I once said that I have problems with balance and doctor said if i can ride a bike it's fine?
Also what seems really important is asking questions, cause I forget some symptoms I have or don't even know it's problem related to ms. Even after years of having ms I'm not sure if some symptoms are due to ms 😅
Yes. After diagnosis in November 2021 my neurologist said "We aren't going to treat you. You could try CBD for symptoms." I have got to the point where I blame everything on my CIS (MS). I plan to keep a symptom diary in 2024 for what's left of my own sanity. Best wishes to you.
@@jannaolsen3557Best wishes to you! It sounds like you need to be more aggressive with your Neurologist or look for a new one!!
Great video. Pisses me off about my care.
I’ve been extremely blessed with my neurologist. She is always on top of the very latest research. She makes recommendations to me for treatment but she is respectful and supportive of my decisions. I trust her.
I read an article recently about a patient suffering with an autoimmune neurological disorder relating to the gut, and so many times the doctors downplayed their symptoms, did not take seriously when the drug prescribed didn't help much or caused serious side effects, and took a very long time to figure out what was really happening. So much suffering that could have been avoided if patient with multiple symptoms and serious drug side effects were taken seriously as you do!
I love this video adds clarity to how I feel . Diagnosed RRMS july this year asked my nurologist how many lesions I have twice and he won’t tell me just waits not the most he’s seen and certainly not the least very unhelpful, I don’t think he’d be happy if I asked to see my mri scans but I will ask him now for sure Thankyou Dr Boster x
Thank you Doc for your Godly guidance and genuine concern
Be 🙏 well.
👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻
Hello, I was diagnosed last July and am currently receiving care from Indian Healthcare and a major hospital (St. John).
I am specialized in ultrasound servicing and repair so I have the flexibility to potentially relocate to where I will receive the best care. I follow your YT channel and have considered it a necessity for navigating this journey during such seemingly mysterious circumstances.
I am really reaching out to possibly gain further information as far as establishing life/care in Ohio. I understand how crucial creating a healthy existence is in regards to improving quality of life and the sporadic climate changes in OK I feel are exacerbating spasticity and just the overall symptoms in general.
I previously lived in Tampa, FL but the heat made it to where I had no energy a lot of the time.
My Neuro kept saying for 5years that she will keep observing me. I don't see her anymore
My neurologist is 4 hrs away so I don’t get to c him as much as I would like to, so your videos are a huge help to me, I’m learning more & more watching your videos. Bless you Dr Boster keep them coming ❤️
Around 12 years ago, I had an mri to investigate possible MS. The neuro didn't discuss my results at all, and didn't advise me to come back at any stage. Here I am now with the high chance I will be diagnosed. I'm now having difficulty walking as well a long list of other symptoms. I wish I was able to be treated by you. You have utmost compassion for your patients. You truly care and also give 100% care. I'm in Australia 🇦🇺
I feel it may be to late for most of my symptoms for not not getting treatment sooner 😢
Thank you!!! I’ve shared your videos to a recent friend who was just diagnosed with MS, given only a course of steroid, can’t walk and pain being managed with dilaudid!!! Admitted for over 2 weeks and only saw neuro twice!!! Oh and doctor reported in his notes that she was safe to go home…so she was denied to go to rehab!!!! It’s truly so disheartening!
I truly wish most doctors were like more like Dr. Boster.
Just diagnosed.. but i got a great neurologist.. discussed everything you mentioned and actually listened. Thankfull for free proffesional healthcare in my country.
Great vid Dr. Boster. Can something be done about anorgasmia?
I wish you clapped your hands on the intro video on the ‘HEY!’
MS rx 96 so been thru a lot. My neuro is great and works well with my PCP. Symptoms you described may come from MS but not always. This needs to be addressed as well.
I wish someone would have had these hard conversations with me when I was first diagnosed with MS. Thank you for providing these informational videos.
I like my doctor.,.. but when I finally found an MS specialist and was referred and met him initiallly... he acted as though I already knew everything I needed to know... I told him my symptoms, chronic symptoms... and they try to treat them but ive hit a roadblock... No one really ever explained to me what to expect from the medications (all of them) how the disease would effect my body and daily life... not what to expect years down the road... And im still at a loss. Most of the info I find is online in MS groups and sharing what Im experiencing and if it is indeed an MS symptom OR something else... I live in Central Indiana and I love your videos ... I wish you were my doc! :) Keep up the good work!!
A neurologist I hired in Kyle Texas to review my MRI stood at our appointment, He reviewed my MRI and said its not MS. In response to my question, what could it be? He stood, Held his hand to his neck and said, I only work from here up, and walked out. I hate your profession
I can't catch a live (thus far) but A) thank you! I "knew" had MS 5 months before I could be diagnosed thanks in part to you and you made that process so much less awful than it was bc it was miserable. B) I'm a public defender in the largest city in state. I am scared a bit of B cell depletes bc of the population of clients I work with. My neurologist rocks but has concerns about Tysabri - sounds to me like she's worried it just isn't convenient and once a month is scary because I have trials regularly and family that is aging out of state. What ate your thoughts about being in a jail regularly in a B cell depleter and Tysabri and fitting it into a busy life. Thank you again!
Thank you!
Great video, thanks Dr. Boster.
1) Failure to treat soon and aggressively to avoid later deficits
2) Not sharing the physical imagery of MRI
3) Failure to recognize failures in therapy
4) Participate in therapeutic inertia
5) Failure to aggressively treat chronic symptoms
Thank you Dr B. All too often there is no time made to help with QOL, its a constant battle. Stable MRIs and no relapses is great to know but an MS person needs more treatment and recommendations as you mentioned.
Thank you, I was dignosed with relapsing remiting MS last week and your videos help so much.
Only 5?
I feel that as I live in Northern England, we are totally just left to get on with it. Thankfully I learn so much from yourself and exercise specialists to improve my own life ❤️ forever grateful! It is a shame that fhe neurologists and MS nurses at my UK trust aren't great.
Currently in an argument about breastfeeding on Tysabri - have you done a recent video on this at all? I'd be very interested to see! I know that the RVI in Newcastle would allow it, and encourage it, but I've been told it's a definite no no and infusions won't be allowed if I choose to breastfeed, so I'm in a pickle!
Sorry for the waffling hah 🤭
there finally trying to tell if I have ms I have these abnormal hesdachs alot of the day and they found alot of lesions so hoping my new nerolgist starts to handle things but here in LA people work alot slower so its stressful hopefully ill find out more , this is a great channel ❤ ty and happy new years .
Thank you Dr Boster, awesome video - so informative and empowering! I look through my own MRI. My neurologist only spends a few minutes on it and only if I ask. Love your dragon 🐉 🥚 😁🔥🔥💖🔥🔥
Glad it was helpful!
Great video! In the 9 years I've known about my MS, I have never seen an MRI, I'd just get told everything's stable or not, I thought not being shown the MRI was normal 😮 I have a new neurologist now so maybe that will change.
Feel free to ask to see it and any other questions you have. Take someone with you if you are prone to forget in the moment.
I watch you often. Perhaps complex multiple issues make it hard like bowel/ bladder. Finding doctors are difficult because they don’t educate themselves 😢. Could you try to empower us how to plan exercise with a visual as Medicare only does so much. Once a week is difficult as it is hard in a skilled nursing to support you. Also I am very glad you talked about QUALITY. ❤SPASTICITY and chronic foot pain. Thanks 😊
Dr.Boster, as a person with MS I just want to say thank you so much. You are such an advocate for us. Would you ever consider giving away “1on1 talk sessions”? I know you can’t be my neurologist since I live in GA. But it would be wonderful to have a chance to chat with you for 10 minutes and discuss if you think my treatment plan and life changes are the best options. I know you already offer so much of your time and thank you again!
Good morning Dr. B, from Pittsburgh Pa.!
Dr. Boster I have learned sooo much from you! From your tips, ideas and discussions, I require more from my neurologist. Just as he was moving his practice, I came to the realization that he was not the neurologist for me. Good guy, good neurologist, but not right for me. Thank you for all that you do to educate the MS Community
I can hear your passion! You must be taking care of a lot of patients that treatment was lacking. I have had MRI's for many years and not one of the neurologist I have been to have ever shown me one.
It’s important as a patient to speak up for yourself being your own advocate! Our doctors aren’t in our shoes or body 🤷♀️
I’m not saying be overly forward and pushy! Begin with ‘let me be clear’ signalling you expect to be listened to, then proceed asking for a conversation about YOUR health. Expect attention and dialogue :)
Love you brother
So THAT'S the problem: Where do you escalate to from Ocravus? One slug of steroids didn't do much to help cover the Crap Gap, and I wasn't interested in going back to Hadassah for another three. So I held out till the treatment on Chanuka, and now I'm STILL suffering unbearable (pun unintended 🐻) MS Hug daily, as well as the jumpy leg. And concerned as to whether this signals possible further damage down the line. Glad that the MRI is stable, but concerned that it's not gonna stay that way if I keep popping pills to shut off the pain! Hope you had a happy Chanuka, I sent the guys with the candles in hope that you'd light for the success of my treatment! Best regards from Jerusalem! 🕎
I have NEVER seen my MRI Scans (of which I have had many) even though I’ve asked to see them. I was diagnosed in 1997
I feel your preaching to the wrong people. I have had MS for 41 years & am struggling with all of it. A quick office visit, I can't can't even explain how I feel ,it is everywhere inside ,I can still walk but the kind of life I have is not good
Great video! you actually give us MS patient hope!!
Im new to this, a doctor recommended to my husband and I that I get checked for MS. We live in Florida and r in the middle of moving to northern Florida so we just picked a primary doctor and gave him the letter of recommendation for MS. I have no other health issues besides Fibromyalgia and the typical getting old stuff. Not knowing anything about MS we did some research and noticed that many symptoms/signs are very similar to each other. The big issue in Florida is finding an honest doctor who WILL treat u for what u came for and not a source for just easy cash. Am i right about the similarities between Fibromyalgia and MS? Thank u for what u do and how much u r helping those who need ur help, u r very sincere 💖
Had to call mine to get follow up this month and ask insurance
Thank you for sharing. I look forward to your videos every week.They really help me.
Since after brain tumour surgery, my MS neurologist decided I only need to come in once a year, and I've been seeing the assistant. Was diagnosed same-day with both brain tumour and MS in 2021.
My neurologist I am not even sure about him and he's also really well known in Canada, world renowned because of his work with MS, but I don't see him, so Inhave no clue. His assistant answers all my questions but alot of my questions do get down played and said well with you we have no clue of it's the MS or the brain tumour damages. I am often lost in what to say, and I do have fatigue and brain fog, but what should I do, get anxiety attacks, which I never thought was even that
I also don't see my brain tumour neurologist who did my surgery (see his residence students) but this I understand as he's doing brain surgeries.
Figuring out how to navigate for myself, is a huge challenge because of both what I have.
So I thank you for your videos as it helps me know what I should be having with my MS side of things.
Thank you Dr B for all of your videos and insights
I'm 5 and a half months on Ocrevus, and now I am having a new attack. According to my neurologist, it's too early to decide that it isn't working and that I should try it for at least a year. What is your opinion?
Thanks for explaining this. My MS neurologist will always discuss my MRI, showing the images while talking about it. She's always open to Q&A. Whenever I have relapses, she'd go over the MRI with me to discuss whether it is pseudo relapse or a major relapse, taking into account the findings and what I've been doing (maybe too much exercise, etc.). If it's my EDSS increasing with my SPMS as well. We're doing a lot more together and she's giving a break while pregnant so I don't get breakthrough activity from really bad fatigue (she's aware and shared how mine is highly active).
Thank you for sharing this invaluable information.
My Neurologist (the best MS Dr in town!) is very failing on keeping any kind of patient/Dr relationship. 😥
I really wish our neurologist could help me as a caregiver know what is coming.
My person with MS has a lot of comorbidities.
Previous heart attack-3 stents, ishemic stroke a year and half ago.
Even before stroke, vision challenges (depth perception for sure- stopped driving 3 months into diagnosis.)
Last year eye issues went to becoming legally blind. Tunnel vision, no peripheral vision. 12% aquity in one eye, 15% in the other. Getting hearing aids soon due to hearing loss more so in the left ear.
Depression, GAD is being treated with medication and therapy. Aphasia has lasted well past a year and half post stroke. Diagnosed with a cognitive communication deficit. Impairments in Attention, Visuospatial skills, clock drawing, Language- all mild, while executive function is moderate. Memory was WNL because they think it is due to lack of attention, even though he tells me that he can't remember what he is going to say. Expressive aphasia, naming issues. Communication is difficult, in speech therapy once a week.
Uses electric wheelchair anytime we are outside home. Can walk very short distances. Very short, shuffle steps. Has a torn labrum from a fall last year. Class 4 risk for surgery, so just trying to Rehab it. Has had home health 4 times in between original MS diagnosis and Stroke. The OT/PT believes he has declined significantly each time a new consultation to be seen by them is given. Insurance will not pay for maintenance therapy.
Since diagnosis, just a steady downhill slope.
First MS neurologist - said 13 mm lesion on thalamus and saw old and new lesions. Tumefactive qualities and fulminating track was what was told to me. He is on Rituximab. New lesion on T6 now spotted. Motion Artifacts on every MRI- he moves constantly in spite of diazepam pills for MRI. So far, due to his comorbidities, doctors believe Rituximab is the safest medication he can be on.
Diabetes, CAD, sleep apena, A fib, obese and so much more. He really doesn't want to try to help himself by changing the things within his control. As a caregiver, dementia is very concerning. Every doctor tells me, he is a "special" case. Never seen someone with so many medical issues. I am sure this contributes to not being able to give any timelines. He is very blessed to be alive. He just turned 49.
I would say 1-3 have not been followed by my neurologist. She has been really good with 4 and 5. So we’re slowly getting there. Thank you for the advice!
I’m stunned. With the exception of the second item on the list you are the first doctor I have heard or experienced from or with anything you have mentioned in this video. My neurologist does show me my annual MRI at my next appointment with them 3-6 months later. When they do show it they have it on the screen next to the previous one and they compare the two pointing out any changes. No words are spoken about shrinking brains or anything else you just mentioned. I didn’t even know that it is possible for a brain to shrink. I just last week discovered that Gabapentin is known to cause dementia. Until 6 months ago it was one of my main medications. The only reason for the change 6 months ago is that for the past 10 years I have spent most of my time stuck in bed hurting and unable to do much more than go to the bathroom or feed myself. I had a bad attack in June and out of desperation to find a way the change things for myself started to actively do research. I spend most of my days researching now. I am almost positive that there is not a doctor even half as good as you are within a days drive. I’m not really able to move from where I am so I am at a loss for how to find a solution.
Check out Dr Wahl's videos. Have you tried radically altering your diet?
a mistake is something done once ,, but when a 'mistake" is repeated, then it is intentional. why? lol doesn't matter why, because you can only change people when they want to change themselves! this gaslighting mode has crippled healthcare system in canada. good vlog A!
Thank you! I have seen my brain MRI but it has been a few years. Now, I haven't had a relapse since 2015 so I am not too concerned about seeing the MRI photos as they are not showing any changes. I struggle with the down there, as you call them, and my neurologist nor my urologist seem to be any help. Some day I will find the doctor to help. In the meantime, I keep Poise in business, pay attention to when I need to stop drinking if leaving my house, and just do the best I can.
(Diag Nov 2021) I could never understand why my Neurologist wouldn't show me and desc my MRIs. I did get them mailed to me on a DVD.... Images make no MS sense to me.
Also, When I asked about investigating for brain shrinkage (2 MRIs), he said that only occurs at research facilities... I am out looking for a new neurologist now. Wierd... Younger guy. Thx Dr B
Thanks 5 years ago ❤❤❤❤❤😢😢😢😢😢😮😮😮😊😊😊
Losing eyesight
They don't show us the MRI or the report as they say that we wouldn't understand it. Which I think is ridiculous. It just makes 8s feel worse as it's though they are hiding something. I suffer from RRMS and have recently started on Kisempta. Thank you Dr Boster xx
I’ve not taken my Ocrevus since May 2023 because I called my neurologist incompetent because he kept canceling my appointments in November. But don’t worry Dr. B. I’m going back to my Arizona doc to receive care. 😂🤣😂
Always for get to "like" until you remind me. Thanks!
I need a different neurologist too btw.
Great video 😊
Thanks for watching
Hey Aaron, thanks for all your amazing content which has been incredible help since my MS diagnosis. Your advice has been invaluable. I wanted to know if you had a view on supplementation with NAD and BPC-157 peptides? I've seen/heard that they can help with MS. Thanks!
My neurologist said my level, 6.5 has no medication is available to help FIGHT/delay MS, ...WHY.?
I wish I knew this when I was in denial.
I love my neurologist but he is "closing up shop". He told me that I can come back to him for about another year and half then
my regular doctor can prescribe any symptomatic episodes to help,
Sad 😥
You make so much sense. My MRI is normal. So does that mean I don’t have MS even though I have spacitity. How do you know where to have the steroid injection? I have an appointment for one in my neck as I have cervical spondalothisis and straight neck.My chiropractor and neurosurgeon said it hasn’t reached my brain. I am trying to avoid neurosurgery. Doctors just don’t address my problems, they don’t have any answers. I am frustrated.
I have symptoms but so far I haven’t been able to get the appropriate MRI s . Only have order for lumbar and cervical spine w/ no contrast.
My Nuerologist won’t even prescribe steroids, heck, he didn’t even remember he prescribed me a new MS medication! 🤦🏻♀️🤦🏻♀️
Hi Dr. Boster!
Thanks for sharing your knowledge, I like your channel a lot and brings me peace of mind! I am 34 yr male and got diagnosed with RRMS a couple of months ago and had my two infusions with Ocrevus recently. Walking with a cane temporarily.
What is the probability with Ocrevus to develop PML if this is my first time using DMT?
Thank you kindly, Allah bless you
Hi..im on Betaferon since 2013 and recently Bayer in Greece decided to stop it from the market..im negative to try the newer treatments due to the risk of cancer (i have a past history of breat cancer) ...so i made an apply to get it from abroad...although i have the secondary ms and i have a 80 % disability, as a doctor myself im not willing to risk havingg serious side effects from new drugs ....whats yr opinion?
I really don't know what to say to my new doctor...😢
i get light headed everytime i walk. j been told its due to ms. 4 years now
I have secondary progressive MS through the years its been dollar coaster over 20 yr. I've never seen you speak of Cad or MSa I do have lupus srogens a long listen autoimmune desease. Lesions are located in the areas that can cause this CAD. But expirencing many others. I would truly like to hear your thoughts on this issue. Sincerely Dawn.
Thank you so much Dr. Boster, you are the absolute best! Following what you mentioned about new attacks under a certain treatment, does the appearance of new lesions in MRI tell doctors that the actual medicine the patient is taking is not working and it needs to be changed? Greetings from Argentina!
Thank you so much for another informative video. May I ask a question for a future live stream. I have weakness in my left arm which gets much worse in the heat. Would exercises to strengthen the muscles help ? I am guessing its permanent damage and if nerve related that strength training wouldn't work anyway? Thank you so much.
Hey doc, what do you think about Plasmopheresis for MS patients?
I am 43, diagnosed 10 years ago, currently on Kesimpta but Edss keeps worsening (already 6,5-7)
Thank you!
I’ve asked to see pictures of my brain ever since I was diagnosed with ms one year ago, but my neurologist doesn’t seem interested in showing them to me. Don’t know why. The nurse said it won’t make any difference if I see them. But I’m I would like to see where in my brain those more than 40 lesions are located. I’m thinking that would be valuable information, thinking I would understand myself better regarding my cognitive functions. Because I’m always frustrated and blaming myself for not being enough.
Things happen in life 🧬 it's a mystery 🔮✨
Question: what do you think about "leaky gut" ?
My neurologist ignored my ongoing symptoms after prescribing DMT. I went back to follow up about ongoing symptoms. She prescribed pain pills but that does not address my specific symptom. I am getting a second opinion because she made all 5 mistakes.
You mention medications so often. I am curious how many meds your patients take, on average. Do you ever suggest something outside the box…more natural? I read a lot about anti inflammatory herbs. Would you recommend your patients see a DO along with seeing you? Forgive me if you’ve addressed this in previous videos. I’m fairly new to your RUclips channel.
My MS neurologist wants me to exercise for fatigue and exercise for cog fog. I mentioned more urinary problems- he thinks that isn’t related to MS cause I have children- although it wasn’t a problem until 6 years after having my last child. I only go there to get my Ocrevus ordered, which I’ve been on since my diagnosis in 2019. 😐