Warning. This is a rant. It's also just my opinion.
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- Опубліковано 26 лип 2024
- Warning. This is a rant. It's also just my opinion.
Don't let a Neurologist make your journey with MS even harder than it already is.
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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!
Thank you for being such a great patient advocate Dr. Boster.
#StrongerTogether #WeHaveMS BosterMS.com
Thank you! Can't believe your nice lady patient could tolerate all these Rebif & Copaxone injections for so many years!
Thank you for ranting, maybe something good will come out of it.
I was left off treatment for a couple of years after diagnosis and had to raise a formal complaint to get treated. 😅it shouldn’t happen like this and I hear your compassionate emotion, something that was sadly lacking in the doctors I initially saw.
My doctor told me MS meds (immuno meds) would be ineffective at age 54. I am on a stimulant though and depression/anxiety medicine. Do you prescribe immunosuppressants to patients as old as me?
Self advocacy was the most difficult skill I had to learn when I was first diagnosed. However, I quickly learned this skill was THE most important one when it comes to MS. Someone (I don't remember who) said, "Kris, you are hiring and paying these medical professionals. If they aren't doing their job, fire them!"
Sadly I hear this scenario all too often in the MS community. Thanks for articulating the problem of not advocating strong enough to be heard.
THANK YOU for this, Dr. Boster! I have been saying this for decades! I am a 59 year-old woman who first had optic neuritis in 1984. I was diagnosed in 1990! My story sounds VERY similar to the lady whom you just spoke about. Since I now have Secondary Progressive MS, I was told that there is nothing more that they can do for me…and this was in Toronto! Whenever, I try to stand up for myself, I am spoken to like I am an idiot who has NO knowledge of my own body and disease-with which I’ve lived for the past almost 40 years!! It is SO maddening, disheartening and ultimately, frustrating beyond belief!
Thank you for making this video. I hope everyone with MS views it.. As a patient with MS and a registered nurse I totally understand about being your own advocate...this is sad and shocking what happened but not surprised. Thank you for keeping the MS community informed..
Hi Dr. Boster! This video made me cry in a good way. It made me cry because I had a neurologist that didn’t treat symptoms and that wasn’t helping me or listening. Now I am lucky enough to be your patient and it makes me cry because I feel like, I am protected by the Dr. Boster shield! I know that you won’t let a patient get worse and not do anything about it - you will always protect!! So a deep thank you for this video and I hope everyone has a neurologist that truly fights for patients!
Thank you for being so proactive and caring of your MS patients! This lady’s story is heartbreaking and while my story is nowhere near as bad I want to add that I also experience a resistance in treating my symptoms from my neurologist. I keep asking for treatment for my fatigue and they keep suggesting lifestyle changes (which I implement already) and also paying someone to help me around my house…. I’m 30 years old and I want to manage my own damn house and I don’t want my toddler to see me getting help especially if there are medications that can give me more energy to get through the day. I’m sick of being treated like a drug addict for wanting fatigue treatment. Sorry for the rant and keep up the great work!
Yes! What are the anti-fatigue treatments available? I am in Europe.
Sadly, this happens all the time. Unfortunately, most neurologists don't specialize in MS like you. I didn't even know that there were doctors like you for almost 20 years. Our symptoms are often times under treated. Like a "what do you expect, you have MS" kind of attitude. Thanks for educating and advocating the way you do. It's much appreciated.
I would give 10 thumbs up if I could. It is because of your earlier videos that I became my own advocate and changed neurologists. I am now seeing an MS specialist and I feel as though I am receiving the best care possible. Thank you for this RANT. It is so off-character for you that it is enjoyable and enlightening. Rant on Dr. Boster.
Good for you. I am learning.
Being a shelf advocate has been the largest challenge I have faced outside of the diagnosis of MS. It's the same as asking for anything from another person. I had no problem being an advocate for another person taking care of my mother and grandfather. Being the person asking for himself is a whole nother thing.
I wish more M.S. neuro’s cared about their patients as much as you Dr. Boster.
I see undertreated MS’rs frequently in the group - there are numerous newer things out there to treat us with… you give ‘em hell Doc! As in this day and age… there is ALOT out there to help us with- as an Educated MS Neurologist this is almost a must, to talk about.
Excellent advice.❤
#sharingiscaring
#MavencladMilf
Thankyou so much. I have a very similar story. 2002 I went blind. Regained my sight in 9 hours. Many symptoms pusued. Neurologists and GP told me it was all in my head. Changed my GP as I was accused of being a Google surfer. I wet myself at CBT. I was told to change my GP at that appointment. Best decision ever! He saw me and said he knew right away what he thought I had. Reluctantly, I agreed to see a Professor in Neurology.November 2013,I was diagnosed with MS. I had a huge relapse 2 years later and was put on Tysabri by another MS Neurologist. I am in a wheelchair also. Very same pattern to your patient. I thank my blessings for that GP and the neurologist who put me on Tysabri. Your patients are very lucky to have you.
We need more doctors like you sir! ❤
Thank you for the video. Sell advocacy is so important especially when under the throes of dealing with a new ms diagnosis. Doug coffee in hand from Lyndhurst Ohio.
I’m only getting a better treatment because of you.
My MS came right after a twin pregnancy 8 months ago, I ended up in the emergency room with postpartum preclamsia and other symptoms for which the doctors ordered an MRI of my brain, active multiple brain lesions.
They couldn’t find out what the problem was and decided to open up my brain just to find demyelination in my brain.
I overheat
I’m fatigue and depressed.
I ask for medicine for all of this and my neurologist said there is nothing for overheating! Go figure!
I asked for Dalfampridine, and then said ok, but first we need anticonvulsants.
Thank you for sharing with us how to be a self advocate in this journey.
Wow, that poor lady. I am blessed to have had very good neurologists in my life. I began having symptoms when I was 16 after i hurt my back in gymnastics. Started with numbing of one of my legs. The diagnosis I received was Transverse Myolitis. Several years and several attacks later I saw my diagnosing neurologist. I explained all the weird symptoms I had in the past years. He wanted to rule out MS, I think bc he saw how young I was. The spinal tap was the last and confirming test I took. MS for sure. I was 20 when I got diagnosed. Its been over 15 yrs and I am now on a B Cell therapy and it's worked great for me. It's so sad to hear the patient of yours did not get the support she deserved and needed from her doctor. Keep up the good work Dr. Boster
I, too went through the same. Symptoms starting in the early 90s. No one put the pieces together until 2015 I asked my Dr if I could have MS. My mri had over 12 lesions, 2 were active. The neurologist I was sent to blew me off. He said I was too old, (late 40s). I lost another 2 years until I found a neurologist MS specialist. I was diagnosed quickly and started on medication. I went through 4 kinds, mavenclad was the last. I've finally had an mri which showed no progression for the first time.
Well done!
This is one, of the many, reasons that your patients LOVE you! Looking back on my MS journey, I so wish I had been under your care for the 20 years that I was under the care of another. You go above and beyond to help us, educate us, and treat our whole being!
This is unfortunately a common occurrence, and I've met different people who progressed in disability while doctors just waited. You are right that we must be our own advocates, but it's often frustrating to know we cannot trust doctors but we have to fight them. Especially in the times we are most vulnerable, during relapses, I would just want to trust my docs and rely on what they say, instead of questioning if they are taking proper care of me.
A mantra for every doctor and every patient is that it is not normal to deteriorate, it's not how things are supposed to be.
I wish that was so. I was told that I should go home enjoy life while I can and get ready for it to get worse. It is and I know where it is going after 30 years of nursing. I just hope it slows down a bit again.
Yes, I have been my own advocate for years because the neurologists I have encountered are now governed by the bureaucracy that has taken over care! As soon as I am able, you will be seeing me. I wish you could do a zoom appointment if only to share
my journey since I am living with this condition. You inspire me every time I tune in to your chats and videos. Thank you for caring.
Can i just let you know how comforting it is to hear a neurologist acknowledge how we are gaslighted by those we trust. Im not saying youre cutting down other neuros, but i know i have been gaslit many times. So many that i have taken things into my own hands because i have been so disregarded. The notes in my medical chart dont even match what has happened to me. I dont feel safe with any of the neurologists i have seen.
Thank you for speaking out. Makes us feel seen for once. ✨💜✨
I hear you, also experienced neurologists that just don't understand enough and treat you poorly, because they don't know what to do with you. You are not alone, hugs💟
The field has changed so much over the years. The idea of continuing a low-efficacy medication despite numerous myelopathic relapses in 2023 is absurd, but it was common in the early 2000s. When I was a fellow (in 2013!), I remember seeing a young woman with a new diagnosis of MS with ~50 gad+ lesions on MRI. I presented the case to an attending and argued we should offer cyclophosphamide 1g/m^2 monthly for 6 months to get the disease under control. They responded we have to start an interferon because "that's what insurance will pay for." Truly, the world has gone mad.
Yup. Happened to me. I had multiple phone calls to insurance where I basically threatened them with lawsuits if I end up in wheel chair, because some adjuster who barely finished high school trying to override my doctor decisions regarding my treatments who has at least of 8 years university education+ field experience.
But this is more than your opinion, it's well supported with evidence. Thank you for communicating all of this for the patients who don't know how to advocate for themselves.
This was me a couple years ago. I was on Techfidera and was have ongoing flare ups one causing a long hospital stay and the others multiple rounds of steroids. My neurologist didn’t seem concerned, being newly diagnosed, I thought it was the normal course of the disease until my insurance changed. My new neurologist is very thorough and has even taught me how to advocate for myself. 2 yrs later new tx and no flare ups and MRI continues to look good! This breaks my heart for patients like yours and myself who are honestly ignorant and reliant on physicians’ support to manage our conditions. So glad your patient found you! 😊
If you don't mind me asking, what is your new med?
@@ulala9898 sure! It’s bi yearly infusion of Rituximab. I virtually have no side effects maybe a bit more fatigued that day, but also it’s MS so!
I was first diagnosed with MS in 2000 and your rant hits me to the core. I have been thru 5 neurologists 4 that specialized in MS. In 2015 I was on tasabri and was told I would have to find another DR because my insurance would no longer be accepted. I gave up and haven't seen another neurologists since then and feel abandoned, mad, upset! I hope to eventually be willing to accept treatment again and o come and see you. Thanks for this video!
It is very sad when your neurologist no longer takes your insurance. I've had that happen twice and 3 days before my appointment in April of this year I was told my Neuro was retiring. It's very disheartening to go through this over and over...
I remember being so thrilled when I was referred to a neurologist. My saviour! He has been fabulous. I feel so terrible for people who have neurologists who just couldn't be bothered. A neurologist has the power to improve your life, and they should do so.
Thank you. Could have become my story. I'm 53 and got diagnosed a year ago. Because of insurance problems, I was forced to first line medications. I choose Dimethyl Fumerate. In a year, I had 1 new lesion, and I am certain I had a new attack as well as I couldn't walk speak and walk for 3 days. This time, with both legs instead of only my right. My fatigue was so bad I couldn't function more than 2-3 hours a day, and I had strange kidney and bladder cramps plus microhematuria, with no other cause. According to specialists, it couldn't be a side effect, and my neurologist wasn't convinced of the need to change DMT. I decided to stop anyway. Now, after a month, my severe fatigue and bladder/kidney pains are totally gone, and I finally got the green light for a second line DMT.
Thanks again for your videos. It helps patients like me to stand up for themselves and avoid waisting time.
Dr Boster, Thank you for speaking your truth. It's not easy but it's important that we dont think of our physicians as Gods who know everything. Question everything.
Hi Aaron, this video is so important! The patient you discussed reminds me a lot of my dad's story with MS, who passed away at 56 last fall due to complications of the disease. This week marks 2 years since I myself was diagnosed with MS, and the first thing my dad drilled into me at that time was that I'm going to need to get really good at advocating for myself! So frustrating that not everyone is getting fair care when there are so many options available today!
"Next week's video will be much more education-focussed" - this one is education-focussed. Some lessons are hard, particularly for patients who already have enough to deal with. But you are 100% right and this video contains a lesson we all need to learn, to advocate for ourselves.
I am a retired nurse. I was misdiagnosed for a looooong time. I never put it together. I had a big serious flare in 2018.
I was blessed to see an excellent young MS immunologist. Ahmed Obedait. We hit it hard and I have had excellent recovery. It’s not an easy road
He is an amazing doctor, I've presented with him in the past. You're in awesome hands!
Thank-you! You are one in a million. Literally. I’ve been told I do not have MS. I do however wish I could see a doctor like you! I finally have a NP who cares and listens and tries to help with the symptoms. First time since 2017! I will never see another neurologist. They are mean, rude, and jerks. The very best one I had was apathetic. I’m sorry. I had one who did a 2 hour first visit and was very kind, but he was an MS doctor and told me that based on symptoms, he would lean toward MS, but none of my tests show MS. I didn’t get to see him again because I don’t have MS.
You are a dream doctor!!
Thank you Dr. Boster. This video is just as important as all your other videos! Very well said. I know there are MS patients all over the world who need to hear this message too. Thanks for making it.
I would much prefer a doctor passionate about their field and their patients, than any other type of doctor.
Thank you for being you, Dr. Boster.
I hope others aspire to be like you.
Thank you Dr. Foster - after an attack that had me in the ER. The neurologist saw me for 2 yrs - diagnosed me with Myelitus- and said I had a new legion in the brain in yr 2 but "that was to be expected for a woman of my age - I was 45!" And he was releasing me. Fast forward 15 years I have an episode put me in hospital and was asked why are you not on medicine for your MS? I was told 15 yes ago - I was fine. Now have many lesions in brain and spinal chord.
Dr Boster-thank you. I can’t agree more with your ‘rant’ and am also devastated for this patient. You don’t have to settle for this kind of treatment. My first neurologist was not someone that i connected with, and wasn’t really listening to me. I switched doctors and found a neurologist who is genuinely concerned and makes sure I have everything I need. She makes sure that my medications work, and that I’m not taking anything extra that isn’t serving my best purpose. I worry that she will retire soon and I won’t still have that top notch care. Thank you for having our backs. Your care and advocacy is invaluable.
So glad I found you early in my journey. So thankful for all the work you do for me and your other patients. Glad you did this video. It deeply saddens me that others don’t get the level of care they deserve. Thanks for being our voice! 🧡
Thank you for your dedication to supporting MS patients.
You rant anytime you please! That just means you are a truly caring doctor and we all need and appreciate that! Wish texas was closer to Ohio ❤
So many people need to see this!!! And frickin’ LEARN!!!! I am with you.
I love you Dr. Boster! Wish all of our MS Neurologist were like you! What a different world us Ms'ers would have! God Bless you and ty really ty for having such compassion for all of us xoxo, Andrea 🧡
Thank you for addressing this issue. Maybe this will be a wake-up call for patients who are suffering with this situation.
My Neuro just pawned me off to an NP that has only worked in family medicine. He was trained in Botox injections for Migraines. 90% of my appointment was him trying to make me have migraines when I don’t. Time to find a new provider! Not all of them care like you do. I wish they would.
Thank you for being such a good advocate for MS patients. Sadly, this story is repeated every day in every country in the world. I had to demand Tysabri in 2009 after 15 years of zero meds. I also get very angry that UK neurologists only deal with DMTs. They never comment on bladder or bowel issues and we have to see separate urologists for that, instead of all our MS care being under one doctor. I intend to discuss Fampyra with my neurologist next week. She knows my walking is severely limited by Utthofs but has never discussed meds to improve it. I suspect most MS patients have similar horror stories. Keep Ranting!
Thank you Dr. Booster for sharing this! I do alot of research and then tell my neurologist I want to try a certain drug. So you are so right on this! We as patients need to be proactive😊
Thank you! My first Neurologist was this way. The others in the office promptly told me that I did have MS, no more waiting it out. Many years on interferon starting in the late 90s. After advocating for myself I got into the ocrelizumab study in 2012 and am still in it and only now have stated using a cane vary rarely and only recently gotten approved for ssdi. I walk daily to use it or lose it! So glad for the many new medications that we have access to now. But I live with the damage that has accrued over the years. I am 53 and am doing better than I hoped I would since the 1980s when I had my first undiagnosed symptoms.
I wish all neurologists were as caring as you. Thanks for everything you do!🙏
I left a comment on one of your older videos. My Mother had MS and TN. MS ultimately ended my Mom's life in 2013. I've been diagnosed with TN but not MS. I have an appointment with a neurologist later this week. I'm worried I may have MS but I'm not at all sure. I'm bilateral and it's mostly all in my teeth, though some pain in my jaw. The pain was only severe on the left and now its also severe on the right. My eyes and lips are twitching now, most my eye on my right side. I just want to say this is so hard to diagnose and it's such a terrible disease, I would wish it on no one. Wish me luck..
Thank you! I call it “set it and forget it”. It’s a full time job advocating for yourself but its a critical necessity with MS
Thank you Dr Boster excellent rant! ☄️It’s heartbreaking to think in the modern era that MS is not treated appropriately. I’m lucky I found your videos and read research and was able to advocate for myself-and that’s why I’m on Natalizumab. 🔥🔥🔥🔥🔥
2:18 This is exactly why I have followed you from OSU, to Ohio Health, and now to The Boster Center for MS. You my friend are THE BEST!
It's sad I had a long time getting a Dr to listen to me thank you for fighting for us...❤
We all need more MS doctors like you who really care about us with the disease. I gave up on my MS neurologist because he snickered at me not wanting to be on any of the medications because of the bad side effects like losing a lot of my hair and gaining weight and lots of it.
He thought it was actually funny and that these medications were going to give me a severe case of stomach pain but it's okay cuz it will slow down the MS, need I say that I've never been back since then and nor will I ever take any medication for my MS, I can still walk and work and take care of myself to this day. I've had MS since 2014, and never a relapse and hopefully never will continue.
Thank you for advocating. Sometimes more than not it feels like we are not heard.
This video hit me in my feels! I have had multiple neurologists each having different opinions of what “they believe is my truth” last one at OSU. To date I Am Not being heard or listened to. I am at my wits end! Trying to figure out my life without support and without Medical Professionals that give a crap. Difficulty in scheduling appointments or finding a core care team. What are we supposed to do? The resources that are supposedly to be available for us in reality are NOT really resources. I am not sure how others with SPMS live but me personally I believe if we just keep silent and do what we are told we vanish into the world of invisibility and have NO LIFE! Talking about Ranting I am in full mode. THANK YOU for advocating on our behalf. We need more of you.
Wow, this was disheartening to hear. You are so right about self advocacy. Odten people go with what they are told by a doc without questioning. They shouldn't have to question but in this day and age with standards not being upheld for reasons unknown... you kind of have to. I feel badly for this woman as well! Thanks for the unfortunately necessary rant Dr. B.
Hello Dr. Boster, thank you for ranting. I wholeheartedly agree with your advice on advocating for ourselves. I hope it's okay to ask for your guidance. My situation is very similar to the one you've described, except that I'm 39 years old. I underwent spinal correction surgery when I was 12 years old, and Harrington rods were used during the procedure. Unfortunately, the rods are now causing MRI images of my spinal cord to be unclear, which makes monitoring any lesions difficult. Is there any other method or test that can be used to monitor the lesions on the spinal cord? I would greatly appreciate your advice on this matter. Thank you so much.
You are so right, it’s very sad this has happened, thank you for talking about this and for all you do 💫
Self advocacy is so important and I learned this the hard way as well. My Neurologist wants me to scale back on the frequency of Tysabri infusions, and I refuse because of how well its working and the quality of life I now have that I know would be impossible if I wasn’t on it. The drug has transformed my life. I’m sure he’s right, but thankfully my infusion Dr. is doing exactly what you’re doing and supporting me in my self advocacy. We need Dr.’s to bang pots and pans together and make noise, because the patient is always at a disadvantage. We can fight for ourselves, but ultimately we need a Dr. to be brave enough to advocate for us and back is up. Way to go, keep up the good work!!!
I wish you could be cloned! Or at least distribute this video to medical schools to teach students how to look more closely and wisely at MS patients. I hear these stories like the one you describe too often and it's a prime example of why we must self-advocate! Thanks for being exactly who you are.
I don't know why you think this was not educational. It is a cautionary tale we all needed to hear. Thank you Dr B. From arizona
After 2 MS attacks in one year I was offered Ocrevus! |To be honest, I demanded Lemtrada back in 2021 but because of Covid situation the neurologists preferred Ocrevus! Now for the 1st time in 4 years my MRI shows no new lesions and there's no MS activity!
Watching from the UK and just had to comment. This video has helped me so much. This patient could be me. I’m 45 and have only just been referred to a neurologist after being referred to rheumatology, endocrinology, opthamology you name it - none of which found a cause for the numbness, tingling, weakness, balance, loss of fine motor skills, fatigue, cognitive issues, incontinence going back over 20 years and 475 pages of medical history of my symptoms. Finally got a neurology referral after seeing my optometrist for eye pain and loss of vision in my right eye. He diagnosed optic neuritis and has done more to hopefully get me to a diagnosis and treatment plan that any other medical professional I’ve seen in all that time. I’m so sad that I could have avoided so much irreversible damage with just any one of those consultants putting 2 and 2 together.
Thank you for this video. I too have gone through a similar situation. Some damage was done I can't get back. Thankfully I have a wonderful doctor at NYU. I am on a new treatment and it is working. I always speak on what happened to me I don't want anyone to go through what I have . Once again thank you so much for speaking out.
You're the best Dr. Boster. You are quite right about too many neuros being asleep at the wheel when it comes to MS. In my mind, it's almost on the level of a scandal, and I admire your fortitude to speak up.
All medical specialties have a governing body or college that advises about standard of care. Is the neuro body waking up? As you know perhaps better than anyone, the treatment of MS is rapidly changing and has been changing for at least the last 5 years.
I love your rant!!! I was diagnosed with Encephalitis for the first 2 years of my illness in 2018 and went downhill so fast. I got cushing syndrome from high dose steroids for 2 years until my 2nd Neurologist DX me with primary chronic progressive MS. I feel like I live in a bouncy castle now, and probably will for the rest of my life I’m told. Thank you for all your videos you really help me personally be a stronger advocate for myself. Thank you Dr. Boster!
"Bouncy Castle"❣
That's a GREAT analogy ~ Definitely hit home for me!
Diagnosed 3/25/21 by Brain MRI
"Toooo many to count" Brain Lesions 😳
I feel as if my 🧠 is a constant "Bouncy Castle"!
The Fatique, memory loss, depression/anxiety, confusion/frustration & etc is a constant fight!
I've always said my "Broken Brain" but I do like & can sadly relate to "Bouncy Castle".
Best wishes to you & may you BOUNCE into the RIGHT & HAPPY CASTLE FOR Y-O-U 🧡
Thank you for making this video! I totally agree with you. We have to be our own advocate for our lives. I feel like a number sometimes at the doctors office but I fight for to be heard. Thank you so much for you passion for us people affected by this disease. You do not know how much you have helped people like me.
I learn something from each and every one of your videos. This by far the most important.
I am taking ALL that I have learned from you to my neurologist appointment this week. I’m need a more effective DMT. I have no doubts about what I want.
I’ll get it or switch numerologists .
I haven’t been to Ohio in years! 😂
Thank you for ALL that you do for the MS community.
Thank you for this rant. It is needed. I wish it weren't.
53, female, DXd 1996, based in the UK.
My neuro retired, and the new one asked me 3 years ago how many attacks etc., and then offered me tecfidera. Since being on that, I have had no more lesions. 😁😁
Watching this brought home that had I been on tecfidera earlier, I might have avoided the last attack that left my both my hands numb.
I am lucky, SO VERY lucky, in that I can still use them, and use them I do, but fine motor control is...well, Interesting.
THANK YOU for being an advocate. You got yourself a new subscriber.
This is heartbreaking 💔 she trusted them and was let down. I was having three relapses a year on Betaseron, I’m so so thankful for my neurologist, who got me on Tysabri the only reason I’m walking today.
Dr Boster, you speak so well when you rant! Thank you for being such an advocate for all of us with MS. You are greatly appreciated ❤
ABCR served their time and they should be abandoned as far as regular MS treatment goes. Maybe there will be a few special cases, where one makes sense, but that is it. I took over steering of my MS treatment in 2013, realizing that Copax belongs to the placebo category. Started by getting pharmacy-made DMF, am on Ocrevus now. It is never easy - telling doctors which (very expensive) treatment they shall prescribe. Regarding Ocre, we still have a disagreement on time between infusions: I definitely need no more than 6 months, they claim it can be 6-9 months, result is 7 months - the seventh month is always a horrible nightmare for me.
Your passion to fight for us MS patients is much appreciated. May it not go unnoticed in your field. Thank you
I wish all doctors care as much as you do 🥰
Thanks so much for all the advice you give in your upbeat and positive way. I have had MS for 28 years and turned 60 last month. Everything seems to have fallen off a cliff over just the last couple of years, agonizing nerve pain,bowel and bladder problems, and all my right side is numb, as for walking, it's just gotten really bad, I can barely stand. It feels I've been consigned to the scrap heap on nearly 30 tablets a day and ketamin for the nerve pain that has me like a zombie, so I just don't take it and continue in terrible pain even at the barest touch. I can't afford private health care . I live in Ireland and if I lived in America I'd move to where you live and come running!
It's terribly sad to hear about this ladies disabilities due to MS and lack of care in the past. I am however, so very pleased that she's now under your care and there's no doubt she'll be doing much better very soon. I too hear these sort of stories from people on my own channel many times over the years. Even worse, I've been told multiple times (through comments) that a person will present with very classic MS symptoms but their neurologist will simply dismiss it as something else and won't even offer an MRI scan when clearly something neurological is going on. My advice to them is always to keep history of their symptoms and to seek out a second opinion. All the Best - Neil (UK)
I'd drive across the country just to have a Dr like this. ❤❤❤❤
So grateful for you Dr.. thank you from all of us.
On Kesimpta & so far so good. 🙏🙏 I luckily worked in the pharmaceutical industry, so self advocate came easy for me!
Thank you Dr Boster!!
Again you are an an amazing Doctor and individual!!!
THank you!!! As someone with MS but who has a very positive personality, I feel like that is particularly not understood/contextualised. I make the most of my situation yes, but if you are my Doctor and you can help, please do!!!!! This is so furiating. thank you for standing up for us!!
And thanks for telling us not to accept it also!
Great video! We agree with you. Wish I could have a consult with you, I'm in Florida (my son lives in Columbus) I've had a sort of similar situation that put me where I am at today. Going off of your Neurologist recommendations we listen and think he or she has the best judgment but sometimes it does not work that way. We too as the patient need to do more research to make sure what is best for us. Love all your expertise and advice. You rock!! A 36 year warrior here, yes we are warriors who battle everyday!! Keep up these very informative videos.
Thank you! I agree. My neurologist in York, PA allowed something rather similar to go on until I left him and traveled to another state to an MS center
I’m going through the same thing! 2004 optic neuritis in both eyes, lumbar puncture showed the iGg banding, and brain lesion, told I was high risk, passed around to multiple DRs , no treatment & no diagnosis. Told I had depression that was the issue with the non stop never ending fatigue.
Saw another dr and diagnosed in 2021.
New neuro dr prescribed vyvance for fatigue and that’s it. My quality of life sucks, I work all day and no energy left to do anything else.
Having problems with bladder, can’t make it to the bathroom in time, told it’s my age!
Wow Dr. B. Some of these scenarios sounds very familiar to me. Im very glad your patient has found you and will be taken care of😊👏🏼
Thank you for ranting this out. I've been a self-advocate since my diagnosis in 2017 because I'd usually get medical officers who don't really know my case (if my neurologist can't see me for follow up) - rare to get those who know my case front and back. I'd record new symptoms, what usually happens when I get relapse so I'd know the moment I am blind, that means I have a relapse. I'm now moderately hard of hearing on my right ear, but I'm told it comes with being a teacher (though ENT does do the periodic hearing test to see if it has progressed). Looking forward to your next informational video!
Thank you for always protecting me and my brain!!!! I am so blessed to be your patient!!!! My babies lobe you too...bc you are keeping their mommy as healthy as can be!!!!!
Thank you so much for your care for your patients.
I was provisionally diagnosed with MS November 1991 after having optic neuritis and problems walking. This was my first term at university studying biology.
I fought with my neurologist for 8 years to get on one of the original disease modifying drugs (Copaxone). He didn't like me though as I understood what he said to the medical students. He eventually transferred me to another neurologist who then put me forward for a study. This study, run by thein the NHS (UK), to see if the treatment is effective for the price of it.
The results from this study allowed other people to be put on this treatment when diagnosed.
I am still on this drug (or the generic Brabio) but it does seem to help me.
I have now been transferred to the MS nurse rather than the neurologist now as I am stable (and have been for years.).
Take care and best wishes
It's so easy to accept what you are told when you see your neurologist. I've been told, when I've mentioned concerns that it relates to my age. NHS works on a budget, so those that need more meds are dealt with and those that get by have to cope.
Dr. Boster, thank you for this video. I wasn’t mistreated in this manner, but I did notice my MS Neuro was carrying a full schedule every week. Her ability to sit me down and explain what changes may arise, or what to expect physically, and possibly the emotional burdens that arise when one’s body is out of control, left me at odds over what kind of care should I really expect now that I have MS. I was unaware that finding an neurologist who specializes in MS would also be a challenge. Ask everyone you encounter who is in the medical field if they can make a recommendation to an actual MS specialist, not a general neurologist. Ask the Neuro you are currently under care, if there is psychological help in the practice or could they make a recommendation (preferably to someone who deals with MS). I failed to understand that going to a Neurology Clinic should at least offer three doctors who are well aware of the attention to provide MS patients. Getting the first visit appointment to a new MS specialist may be a long wait, but nonetheless, make the appointment and keep it. A good MS specialist will always review your MRI’s with you and not leave them up to a tech or the Nurse practitioner. I was attending a clinic here in North Dallas, and the MS specialist saw me once. Never followed up with me again. Although I did get to visit the Nurse Practitioner for most of my appointments, it was frustrating when that NP who was very well versed with MS left the practice. Her replacement was not quite adept at understanding how symptomatic I was at the time, and expected the symptoms to be to mirror her understanding of how it was explained in a text book or lecture. I have found a good practice where there are several MS specialists and the NP staff are very open to hearing of the challenges I encounter. So far, my treatment with Ocrevus has proven very effective and my symptoms are few. My biggest MS hurdle; the fatigue, has been completely absent. If anyone feels as though their MD is not doing enough to halt or minimize your symptoms, please find another doctor. Copaxone should never be uttered by a good MS Neuro who is up-to-date with the latest medication. My best to you all.
Rant away - what an amazing reminder to fight for the right treatment. If only all neurologists were like you :D
That is just Horrible! I'm so glad she found you!!
I am so glad you are progressive thinking and don't just settle for the status quo. I am so happy to have you as my neurologist.
That's why I switched by husband to you, our 1st MS provider was very nonchalantly about the whole process. Not good enough for me, he was fired!
I am so glad this lady came to you… wish it could have been many years ago…😢 thank you for always looking out for us Dr. Boster..🙃💕
Good God. For some reason i felt really emotional today. I had my ocrevus infusion on Friday and was just taking it easy. This video really was powerful that some MSers fall through the cracks even while being as proactive as they can. Continue educating and shedding light❤
My neurologist is great and shared your philosophy. I had a new lesion a year after diagnosis (on Tecfidera), and I said, “Well, one new lesion isn’t that bad.” She said something to the effect of imagine one new lesion a year for 20 years, that’s unacceptable. We started on Ocrevus, and I have had no new lesions.
My neurologist advocated for me!!
I am no Neurologist but hearing about some of the drugs these "Neurologists" prescribed this woman even made me have a WTF moment. I really wish all the best for this woman. She deserves better.
oh wow, this is a powerful video....and one that makes me even more grateful for my neurologist....i did not know how lucky i was when i landed with him at diagnosis almost 5 years ago...he is the full real deal - researcher, practitioner, integrative health aware, he put me on the most effective therapy available & appropriate for me (ocrevus) and calmly educated me over time about an integrative health approach to living with MS ..... thank you for sharing - you've reminded me to thank my neuro at my next appointment :)
I have MS. After scary side effects with Glatect, I decided not to take anything. I had my first symptoms in 2017 and I am still very functional. As patients, I think we also have to read about MS and try to understand why our symptoms develop. I think stress was the trigger in my case. So my "medication" is working on my stress. Maybe in a few years, I will decide to try another medication, who knows.. But as patients, I think we also have a responsibility. It is sad for this woman, but following blindly doctors, despite their specialization, is a risk. There is no cure for MS, only treatments that "can" slow down the degeneration. Our body tells us if it works or not.