Doctor Boster.... you seriously are better than my Monday morning coffee! Thank you for caring..be it for your patients directly in clinic or actually for someone far away in Massachusetts like me. You’ve given me sooo many tools in my toolbox of fighting my MS. I’m guilty of participating by honestly self denial. I refuse to admit I’m having issues and push myself thru and ignore and wait for it to pass. An example is traffic lights for one...I see very well but oddly traffic lights I see two red, two green, two yellow...you get it. One on top of the other screwing... I shake it fr cuz I know it will pass soon and why bother my neuro who’s busy when i know it will grade soon. Guilty gal here. Thankfully my vision isn’t distorted just a slight skew. But honestly, this video had me thinking more. Thank you again and if you ever want to visit Salem, Massachusetts with your family...you have a personal tour guide! Thanks again.
Christine Derby , good morning! He had been a world changer for me over the last 5 years. We drive 5 hours to his office in Columbus, but we would drive 10 to see Dr AaronBoster! Have a good day! ❤️
One major goal: not end up in a wheelchair. From my own experience, *insurance* is the greatest contributor to therapeutic inertia. Denial of medicine, then I had 3 new brain spots waiting for approval.
I will have to brag here about a huge part of the difference in Boster and any other. I see him 60 minutes, every time! Who does that?$. Not to say much about what i don’t know for sure, but I know a part of why he left the lady MS Clinic he was at. He can’t help staying with his patients, and hospitals won’t let doctors do that! I wish you were able to be his patient!! 😐
Holas and good morning Dr. Boster. Thank you for this video. My life goal is to not end up in a wheelchair so I try to eat healthy, take my DMT and stay as active as I can, even though many times all I want to do is stay in bed. If I do end up in a wheelchair, it definitely won’t be because I didn’t fight enough to prevent it.
I’ve been participating in therapeutic inertia by not prioritizing PT. I feel selfish doing it when I have four young children to take care of, but thinking about not being there for them in the ways they’ll want me in 30 years puts it into perspective... Really grateful for my doctor too. My insurance denied my DMT a few months ago, before I even got the letter from them in the mail my neurologist had done his part. I called as soon as I got the letter and he had already gotten approved and has it expedited.
I was thinking about PT also for exactly the same reason. 4 kids and full time work. I already use a walker at home and a wheelchair in public. This might just be the motivator I needed.
This video literally brought tears to my eyes. This topic is very important to understand! I didn't solve this problem until I came to the Boster Center for Multiple Sclerosis. I am now employed and in the best shape of my life. Not all heroes wear capes. Thank you Dr. B!
Wish you were based in the uk Dr B ! 🇬🇧 I’ve understood more about MS with you than I ever have with my neurologist & nurse ... everything is rushed & you feel an inconvenience asking ... exhausting always having to push . My goals are to stay as strong & fit as I can... to continue working ...to not end up permanently in a wheelchair... & to smile & laugh as much as I used to . With my thanks for all that you do whilst working towards making MS boring .
TY doctor. I find ballet and playing piano helps.. I learned both after my diagnosis with rrms.. I tried provigil. My therapy is ballet. So much of my pain subsided. I was forced to resign as a Biology teacher; I did my research, ballet helps with ataxia... I’m living proof. I was in a wheelchair, catheters, etc... inertia 🧡🧠💪🩰
That was a fascinating concept I hadn't even realised. Here in the UK the neurologist & MS nurse show you all the available treatments, They explain how each one works, there effectiveness, how there administratored, They work with you to see which works best for you. The patient gets to choose whether they want to start on the low effercercey drugs, or like I have, and gone straight the high effercercey (Ocrevus) which I should be starting very soon🤞 My neurologist seems to be a champion of kicking MS in the butt 🥳
As someone just starting this journey, our U.S. health care system scares me more than the disease. Thank you for your wonderfully informative videos! Have a great day everyone!
Wow I feel so much better that this has a name and im not alone. I was supposed to schedule my treatment on Thursday and the insurance came back and said I wasn't authorized and that they "didn't send in the paperwork" I was in the hospital when they sent it out. I knew it was a load of garbage that they said that. And im calling the insurance company Monday and I want to hear it from them that they got the paper work because they just resent it to them. I was diagnosed in January and have had this for years. Im still young and have no issues now that affect my every dat life but as you said we need to get the ball rolling now. I can't sit back and wait another year when it's been a few years untreated because I had no clue until I lost vision in my eye!!. My biggest goal is to see my future kids... be able to walk down the to the alter on my wedding day... be able to care and provide for my future family. Be able to go on those vacations and have fun with my significant other. Finish my masters degree and own a business. I got big plans I refuse to put on hold. And as my daddy always taught me not to take sh*t from anything or anyone ill be showing them just that when I call them.
Dr.....you are great in your presentation from a clinical perspective. My neurologist is Dr. Dave' of CNMRI in Milford DE. I never feel rushed and he is always very compassionate and helpful. My goals, to never be wheelchair bound again, to walk for exercise, even when my leg is not getting the hint/ signal to MOVE and to stay in a positive state of mind.
Dr Boster you are so on the ball with this ! As an MS patient in the UK I feel let down by the system & my MS team.The Pandemic has put a stop to everything & MS doesn’t stop! I have been on Glatirimer acitate (copaxone) for about 14 years & my condition has been progressing slowly (diagnosed 2003) the consultant only does MRI’s of the brain & apparently there is no change ! Although every aspect of my physical being is deteriorating the opinion appears to be just carry on as you are! Frustrating, but what can I do 🤨 Keep up the good work
Thanks Dr. Aaron, you seem to know what we're going through even when you don't know us individually. How cool is that! Anyway I like alot of others on this channel fight therapeutic inertia everyday of my life. Thankyou for discussing this topic.
THANK YOU Dr. Boster! Your Frank and Honest approach to helping us is REFRESHING!!! I have been through all of these phases but I KNOW that I just need to KEEP MOVING!!! Perhaps The Bee Gees song “Stayin’ Alive” should be on all of my Fellow MSers playlist!!! Thank You again Doctor!!! Keep On Keepin’ On!!!
Therapeutic inertia -- Anxiety/Restlessness -- Memory/Incoherence A deadly combination faced - Patients like me, doubt ourselves - Was I able to read messages on my phone this time last year? 😲
GOAL: be able to continue my jazz singer trajectory with these amazing bands I've worked with. It was all starting to have traction right at the start of the pandemic. Ironically the reason I felt brave enough to start Ocrevus, figuring what better time to spend with potential side effects- "not like I'm booking those concerts now anyway!" I have definitely had therapeutic inertia, with a side of "self advocacy" fatigue. Over the past 20 years. After being aggressive time after time the life goals got smaller and smaller. After the last treatment I spent 6 years in this inertia. It was nice not to *fight* all the time. But I get it. And I tell others that I would not recommend doing that. I achieved a lot towards my goals in those years, plus free of medicine side-effects I was able to overcome some big work challenges, divorce challenges... so it was unfortunately self rewarding. But I need people to know that I was LUCKY, too. And I wasn't looking 20 years down the line. I was looking for the next jazz performance to go well without stumbling or having to cancel. I was looking 20 years BACK. (I do not recommend doing that!!) Well, NOW I am finally back on a therapy - insurance was hell to sort out and continues that way. The price of my 6 year drug vacation? I don't think we will ever really know, but those show enhancing glitzy high heels that seem as much a part of jazz as the vocals? History. :) Seems superficial but the shows will be different and I *will* find ways to compensate. I say again- I was FORTUNATE that my years of therapeutic inertia didn't result in *more* damage than trade swanky heels for a swanky cane. Not to minimize the emotional blow of reality of needing a mobility device- A lesson in Vanity and Adapting, certainly. Ocrevus and I *will* be back on stage.
I think Modafinil is amazing! I live in the UK and have had MS for almost 15 years. I took Copaxone for about 8 years but have now changed to Gilenya. So much better to give up on the injections and my MRI's over the last few years have been stable. Sadly though my fatigue has got worse and I'm just recovering from covid which has given me worse fatigue and insomnia 😳 I started off taking Modafinil 100mg twice a day a few years ago which over time was increased to 200mg. This did work really well and I was really happy with it. Before Christmas and covid I noticed though that I was getting worse fatigue wise so I started to take 400mg in the morning instead of 200mg twice a day and it's a game changer! Yes I can be tired in the afternoon, but I have more energy in the morning now to get up and live my life with my husband and 4 year old son. Yes having a young child is exhausting in itself! I used to nurse but sadly had to retire as I physically can't stand for long and look after patients 😕 I do keep myself busy though with volunteering so I can stay active. Thank you for your videos, I learn so much!
Thank you, Dr. Boster! Great point about bureaucracy! Terrible system! Insurances do approve Provigil for night shift workers. May be your patients neededing that med could pick up couple of those night shifts? 😀
You are brilliant. You frequently make my list of things I am grateful for. Thank you for all you do for the MS community. I'm getting my fifth full Ocrevus dose today! Have a nice day🤗🌞
Im finally getting to watching this and I have to say OMG, this is it! There is a reason and purpose for me making the move to Boster Clinic for MS during a pandemic time. I look forward to 2021 and rewriting my life goals since I got hit with MS and hit a wall with past clinic visits with several doctors trying to treat me. I know I cant get back my last 6 years but I know I keep HOPE ALIVE and living with MS.
This makes so , much sense! I am under a working diagnosis. It’s been a year and I have not started any drug therapy. I do definitely have a demyelination disease with lesions on every lobe .... I have vestibular damage and cervical dystonia ... cog fog insomnia all the usual stuff. I am worried that I should be having infusion treatment. But so far nothing. I was told to hope that I have MS because the alternatives were worse. :/ idk 🤷🏻♀️ Thank you for all your information
I was very very close to not getting treatment. I even delayed it for a while. All it did was make things worse. Since I started treatment I feel the best I've felt in 10 years. Even though I still feel like crap a lot haha. It's 10x better.
Getting my DMT was an obstacle race. Last one was when they told me that I have to wait a month (after many) to get the vaccines I needed before starting the treatment. So ,after trying to file a complaint unsuccessfully, I just went to that deparment at the hospital and I told the secretary " I have MS and I can't be treated until I get these vaccines, there's anything that can be done?" . Her answer was: "what hour is ok for you come next thursday? At 10, 10:30, 11...?"
This video makes me realize how lucky I am. My first Neurologist knew I was at risk for more aggressive disease it wasn’t even a thought to not choose a DMT right away and when that one failed she got me on Tysabri even though it wasn’t covered yet. I am walking today because of great health care and luck! 15 years in and just now looking at canes.
I'm like so many here with a Dr who pushes through or ignores my symptoms. I often write a list of what's going on and have it on hand for our meetings. 'Sleep issues and weird hallucinations? Not MS. Headaches and vertigo? Not MS. Bowel issues? Not MS, but are you experiencing any numbness or tingling...no? Yeah, not MS. Keep doing what you're doing and I'll talk to you in 6 months.' How many times have I left an email to his office, only to have his assistant write back a condescending note that he doesn't need to address the issue until my next MRI in two months? Why would I tell him anything small when he doesn't care about the big?
I have been following you for appx 2 years & it didn't occur to me that a part of why I love & trust you is that I see similarities in you & my Neurologist. Turns out you trained him!! Dr. Matthew Carraro...thanks for all you help! 🧡
My doctor gave me tramadol even when I told him I wasn't in pain but I was bedridden happy ending though went to the hospital had plasma exchange and now I'm back to my new normal
I was misdiagnosed with MS. My neurologist would not listen to like she wanted to fit me into her diagnosis. Every time I would tell her about my symptoms she would say that’s not MS but would not look into what I was. She was right, it’s not MS , it is NMO. I just kept getting worse. Lucky I found an amazing MS specialist who listened to and now I’m doing ok not great but ok.
Thank you for explaining this. I am not on a treatment for the last three years. I think my doctor is wonderful, i have been going to him for about 20 years, when i am in his rooms we tend to chat about life, his kids, property and everything in between. I have a zoom meeting with him on the 3rd of February so i will ask him to please put me on a treatment. I have serious nerve pain so on medication for it but not an actual treatment.
Hearing about all he issues with medical insurance and getting approved for a drug, and the cost of it makes me so sad. But also makes me even more thankful for my NHS.
Therapeutic Inertia: that term made so much sense to me. I have never visualized it before but have always recognized the break down in patient focused care. Burnout on so many levels happens and this practice can have some very traumatizing effects. Thank you again Doc!
I’m 26. Just got diagnosed in July. Have 2 kids under 2. So I thank you for giving us consistent updates and knowledge about this. It means more than you know.
Doctor boster I so needed to hear this right my current neurologist in Michigan is kind of throwing me on the back burner and I feel I am getting through the day but maybe progressing. Very frustrating not having a good team behind me.
I love your videos and presentations at conferences. I've had MS for over 30 years and wish you were my doctor. I live in Florida so that's not possible. Please keep educating us online.
I didn’t know there was a name for it. Definitely experienced it at the beginning of my MS journey. I knew I wasn’t relapsing, but docs wouldn’t acknowledge that. They treated me as relapsing for 1.5 years. And in that time I progressed at a rapid constant rate. My fight was bigger than their fight. As for long term goals, I lost my fine motor. I have a very hard time setting long term goals. Really, the goal is to keep walking as long as possible. But thanks to tremors, stuff I want to do...hold and feed grandchildren is already lost. My kids are only 10 and 7. I’m 35 and have the leg and arm movements of a 70-90 year old. Diagnosed rrms 2017, PPMS 2019. Feel like a lost cause.
You just could not be more awesome. Yes I’ve participated in therapeutic inertia throughout my entire 20 year journey but my physicians were definitely complicit and leading me there. I feel so defeated!
Hi Doc. I think I was part of my therapeutic inertia. After 1.5 yrs of no one able to figure me out, and doing my own research, I was99% sure I MG. I talked to my Neuro doc (military) about it and even though he said he didnt think I has MG, he agreed to a consult at Duke Uni Neuro department. Of course I didnt have it. About 5 months later he said I think we should do a spinal tap, thus I was diagnosed with MS. I should not have had my mind set on MG but I also feel we should have done the spinal tap way before he finally did it.
Thank you for the videos! They have helped give me the courage and information that I need to talk with my doctor within the next two weeks during my checkup.
I tried to be good and get on a DMT right away. Put up with terrible side effects for 18 months on Tec and 4 months on Aubagio. My doc was concerned about the risk of infection with a more highly effective DMT. She said that if I get an infection that I might not be able to fight it off because my immune system would be wrecked for 9 months. She didn't seem to think it was worth the risk for someone with very low disease activity. She said we will keep doing MRI's, watch for symptoms and wait. She did say that I could get on something and offered a couple but I was more sold on the don't get an infection and die route. I wish I knew what my statistical odds were either way. I'd rather look at it from a statistical hard numbers viewpoint.
It really stinks that doctors have to devote time in wrestling with insurance BS. They should be able to just focus on what's best for their patients. Doctors are..........well doctors, not "arbitrators"!
My own doctor has ignored me for years saying my symptoms were normal. I went private and right away was told it wasn't right and to see a neurologist. I had a massive relapse last year which has not went away and actually got worse at times. I was diagnosed last year but not I have to wait weeks or even months to get my treatment through the NHS. I feel I am majorly suffering as a result of having to wait!
Thank you for this wonderful video Doc! I’ve been thinking about the pandemic and how hard making a decision for patients and docs is nowadays. You’re so right when you said Ms patients have Ms during or after the pandemic and it’s best to discuss with our Docs to know what strategies to take so that we can accomplish our life goals!
19yrs into diagnosis is when I started DMT. Eight years later physio/rehab appts has dropped to once weekly. A Bakers cyst, worsted toes ankle hip lower back. Been 3yrs @rehab, using cane now falling down banging onto walls. Neuro dr. does return calls.
That was great insight. You're right, I have seen it everywhere. What was the term for prior authorizations of needed medicines. Something like "Step Edit"?
LOL I feel so attacked right now...I was diagnosed in September and I started my first DMT at the end of October... took it for a few weeks and I'm just barely starting my new DMT. I really slacked on all tasks on my end like blood tests, vaccines, scheduling and appointment to see the nuero.
So my doctor can't come in and speed out, I write down my issues and needs. She has to take the time to read them and then spend time learning about my issues. I have been doing this for the last few visits and it works great, for me.
Enjoyed this presentation very, very much. Question: How can the “average Jo” pursue pushing back, for lack of a better term,” against therapeutic inertia in regard to our private employer supplied insurance companies? Is there president for same? Is there an avenue through which one can lobby for patient rights and put these decisions back in the hands of both doctors and patients? Any thoughts or suggestions?
After multiple denials of Ampyra I read the fine print on the insurance paperwork-I have the right to appeal to the State insurance board! Well I called my insurance with some questions about the denial & told them “I was exploring all my options” including a State agency appeal. Bingo! Ampyra approved in less than 24 hours, no State action needed! Tho I would have done it
I would suggest, (and I have had to do this same to fight extremely expensive medical bill, and also did back in the day when having to fight for coverage of my Type 1 testing supplies before they were state mandated to be covered by insurance) to draw up a very detailed letter to your insurance company explaining the need for coverage, how it will benefit you and others in the short term, long term, & say why you cannot take other meds, and always mention how in the long term it will provide cost savings to the insurance company, etc. Ask your Dr to proof read to see if they could add a suggestion to your writing & also perhaps add a letter from them as a medical professional as well. Then find out who is in charge of Health Care Administration & CC them as well as your State Representative, Senator, Governor, etc...
@@ritamcd2560 Great job! Insurances are scared of state agencies. In case of state overturning insurance's denial, insurance has to pay hefty penalty to the state, like $5K or so per each case. Employers' sponsored health plans are not regulated by state agencies though...
Currently going through an exacerbation (probably stress related) arms and legs feel like lead, with crampy hands and so tired it's painful, most of neurology have been deployed to other wards... I defo feel brushed off 😩
Great video doctor b. I got diagnosed in April of 2019 and I found you immediately on RUclips and I've been watching you Non-Stop.thank you for your great knowledge like I always told you I wish you were my doctor. Prior to my diagnosis I was diagnosed with osteoarthritis in both my knees stage 2 they're pretty bad. I worked in construction my whole life , my legs are strong. they're very strong . but now since I have a Ms I feel like they're so weak and shaky. And that has a lot to do with exercise because I'd have to sit down after standing for only a couple minutes. Any suggestions on how I can try to walk normal again?
I tried Vigil, it gave me a depression after a while, and it didn't really work all that well. And I had to pay for it myself anyway, I think it was 1 Euro per pill.
Another additional item to add to therapeutic inertia... One I've experienced over and over... Multiple diseases & health issues. Each Dr for each disease continuously blaming the other & sending the patient around in circles back and forth to each Dr! Examples... Patient with T1d & MS or MS and spine disorders or MS & Lupus or MS & RA... Or a combination of say 3 disorders.. Which brings it all back to the therapeutic inertia that you've already mentioned becoming a viscous circle fir the patient. It then will make a patient literally want to give up on the medical professionals completely when they are not listening, helping or taking what that patient has to say seriously.
Insurance company says tysabri is approved every 4 weeks. Dr office says they won't pay twice in the same month. Missing an infusion every year and nobody will help no matter how much I try to fight it and question it.
Im one of them, im so darned scared of life threathning side effects, but my goal is when i have taken the second vaccine doze if i dare 😢im going to try and get back on mabthera.
My neuro (retired now) was able to get the Modafinil easily. He was great at providing the "medically necessary" information for the insurance companies. I stopped taking it until recently again for being afraid of side effects. Now I take 1/2 capsule. Also afraid of steroids. Rx effects indicate "bone thinning" - DEXA had indicated "severe osteo" just before my spine collapsed in 2019. I'm in a wheel chair a lot of the time but use my walker for getting around the house and doing laps up and down the hallway. Recently went on Kesimpta rather than steroids and seem to be having great results so far. (DX was Jan 2003). I didn't find other therapies helped so stopped everything for a number of years and now am completely frightened by the idea of steroids. Should I be, and if not, why not?
But the neuroscience nurse has told me she is not putting me on DMT ?? I was diagnosed 3 years ago and also have Ankylosing Spondylitis and do not take any medication for anything at all. Recently I have started using a walker as cannot hold my core for long. I am exhausted as soon as I wake up in the morning and have cognitive issues so bad I cannot organise myself...am I not a good candidate for DMT's? I'm so confused because I feel I'm being left to fester and it's exhausting trying to lead a relatively normal life with this cloak of heaviness. The appointments I have last 10 mins every 6 months and there is no MS centre or specialist where I live. It's not good feeling abandoned 😥
Thanks Dr B 👍 I dutifully reported a worsening of symptoms over email and got told 'see your GP, that sounds like it might be BPPV' and nothing else. healthcare here is buckling under COVID, so feel I can't expect more. Is that inertia on all sides ? (Protocol here is 'no steroids unless your walking is affected or you are totally incapacitated by symptoms - which have to be 'new''
This is all making me so angry. There is no wonder there is not much progress toward fixing MS. Dr. B. Try your best to make these therapies affordable for all of us.
If it changes the trajectory forever re: early treatment, does that mean that I’m just screwed, having been diagnosed probably 10 years late? I went straight on tysabri after diagnosis, then HSCT.
Doctor Boster.... you seriously are better than my Monday morning coffee! Thank you for caring..be it for your patients directly in clinic or actually for someone far away in Massachusetts like me. You’ve given me sooo many tools in my toolbox of fighting my MS. I’m guilty of participating by honestly self denial. I refuse to admit I’m having issues and push myself thru and ignore and wait for it to pass. An example is traffic lights for one...I see very well but oddly traffic lights I see two red, two green, two yellow...you get it. One on top of the other screwing... I shake it fr cuz I know it will pass soon and why bother my neuro who’s busy when i know it will grade soon. Guilty gal here. Thankfully my vision isn’t distorted just a slight skew. But honestly, this video had me thinking more. Thank you again and if you ever want to visit Salem, Massachusetts with your family...you have a personal tour guide! Thanks again.
Typos ooops. I’m sorry I think you get the jest. My vision is fine and it occurs here and there
Christine Derby , good morning! He had been a world changer for me over the last 5 years. We drive 5 hours to his office in Columbus, but we would drive 10 to see Dr AaronBoster! Have a good day! ❤️
Christine, we should carpool from MA.... 😉
One major goal: not end up in a wheelchair. From my own experience, *insurance* is the greatest contributor to therapeutic inertia. Denial of medicine, then I had 3 new brain spots waiting for approval.
Goals: get diagnosis for mystery illness
Stay out of the ER this year
Get well enough to grow my family
I’d like to add that I’m gonna say about 60% of the time my doctor rushes in an out and doesn’t listen whatsoever again I wish I had you. God bless.
I will have to brag here about a huge part of the difference in Boster and any other. I see him 60 minutes, every time! Who does that?$. Not to say much about what i don’t know for sure, but I know a part of why he left the lady MS Clinic he was at. He can’t help staying with his patients, and hospitals won’t let doctors do that! I wish you were able to be his patient!! 😐
In my opinion, there are too few neurologists, and of those neurologists, few seem to understand what is required of them to treat MS patients.
Holas and good morning Dr. Boster.
Thank you for this video.
My life goal is to not end up in a wheelchair so I try to eat healthy, take my DMT and stay as active as I can, even though many times all I want to do is stay in bed.
If I do end up in a wheelchair, it definitely won’t be because I didn’t fight enough to prevent it.
Hola mary lou wow im going to make that my goal too
How long have u been diagnosed? Where do u live? I need someone to talk to.
I’ve been participating in therapeutic inertia by not prioritizing PT. I feel selfish doing it when I have four young children to take care of, but thinking about not being there for them in the ways they’ll want me in 30 years puts it into perspective...
Really grateful for my doctor too. My insurance denied my DMT a few months ago, before I even got the letter from them in the mail my neurologist had done his part. I called as soon as I got the letter and he had already gotten approved and has it expedited.
I was thinking about PT also for exactly the same reason. 4 kids and full time work. I already use a walker at home and a wheelchair in public. This might just be the motivator I needed.
I love how you mentioned think about your goals, this is why we fight this.
This video literally brought tears to my eyes. This topic is very important to understand! I didn't solve this problem until I came to the Boster Center for Multiple Sclerosis. I am now employed and in the best shape of my life. Not all heroes wear capes. Thank you Dr. B!
Wish you were based in the uk Dr B ! 🇬🇧 I’ve understood more about MS with you than I ever have with my neurologist & nurse ... everything is rushed & you feel an inconvenience asking ... exhausting always having to push .
My goals are to stay as strong & fit as I can... to continue working ...to not end up permanently in a wheelchair... & to smile & laugh as much as I used to .
With my thanks for all that you do whilst working towards making MS boring .
TY doctor. I find ballet and playing piano helps.. I learned both after my diagnosis with rrms.. I tried provigil. My therapy is ballet. So much of my pain subsided. I was forced to resign as a Biology teacher; I did my research, ballet helps with ataxia... I’m living proof. I was in a wheelchair, catheters, etc... inertia 🧡🧠💪🩰
Thank you for the information. As a mother of a young lady newly diagnosed with MS, I find your videos very helpful. Thank you
Wonderful!
That was a fascinating concept I hadn't even realised.
Here in the UK the neurologist & MS nurse show you all the available treatments,
They explain how each one works, there effectiveness, how there administratored,
They work with you to see which works best for you.
The patient gets to choose whether they want to start on the low effercercey drugs, or like I have, and gone straight the high effercercey (Ocrevus) which I should be starting very soon🤞
My neurologist seems to be a champion of kicking MS in the butt 🥳
As someone just starting this journey, our U.S. health care system scares me more than the disease. Thank you for your wonderfully informative videos! Have a great day everyone!
Wow I feel so much better that this has a name and im not alone. I was supposed to schedule my treatment on Thursday and the insurance came back and said I wasn't authorized and that they "didn't send in the paperwork" I was in the hospital when they sent it out. I knew it was a load of garbage that they said that. And im calling the insurance company Monday and I want to hear it from them that they got the paper work because they just resent it to them. I was diagnosed in January and have had this for years. Im still young and have no issues now that affect my every dat life but as you said we need to get the ball rolling now. I can't sit back and wait another year when it's been a few years untreated because I had no clue until I lost vision in my eye!!. My biggest goal is to see my future kids... be able to walk down the to the alter on my wedding day... be able to care and provide for my future family. Be able to go on those vacations and have fun with my significant other. Finish my masters degree and own a business. I got big plans I refuse to put on hold. And as my daddy always taught me not to take sh*t from anything or anyone ill be showing them just that when I call them.
Dr.....you are great in your presentation from a clinical perspective. My neurologist is Dr. Dave' of CNMRI in Milford DE. I never feel rushed and he is always very compassionate and helpful. My goals, to never be wheelchair bound again, to walk for exercise, even when my leg is not getting the hint/ signal to MOVE and to stay in a positive state of mind.
You are so helpful glad and happy to watch your videos every day! 😀
Glad you like them!
Dr Boster you are so on the ball with this ! As an MS patient in the UK I feel let down by the system & my MS team.The Pandemic has put a stop to everything & MS doesn’t stop!
I have been on Glatirimer acitate (copaxone) for about 14 years & my condition has been progressing slowly (diagnosed 2003) the consultant only does MRI’s of the brain & apparently there is no change ! Although every aspect of my physical being is deteriorating the opinion appears to be just carry on as you are!
Frustrating, but what can I do 🤨
Keep up the good work
Thanks Dr. Aaron, you seem to know what we're going through even when you don't know us individually. How cool is that! Anyway I like alot of others on this channel fight therapeutic inertia everyday of my life. Thankyou for discussing this topic.
THANK YOU Dr. Boster! Your Frank and Honest approach to helping us is REFRESHING!!! I have been through all of these phases but I KNOW that I just need to KEEP MOVING!!! Perhaps The Bee Gees song “Stayin’ Alive” should be on all of my Fellow MSers playlist!!!
Thank You again Doctor!!!
Keep On Keepin’ On!!!
You are so welcome!
Awesome video Dr. B!
Glad you liked it Matt!
Therapeutic inertia -- Anxiety/Restlessness -- Memory/Incoherence
A deadly combination faced - Patients like me, doubt ourselves - Was I able to read messages on my phone this time last year? 😲
I've been reassured that the eye sight getting worse thing is age related
GOAL: be able to continue my jazz singer trajectory with these amazing bands I've worked with. It was all starting to have traction right at the start of the pandemic. Ironically the reason I felt brave enough to start Ocrevus, figuring what better time to spend with potential side effects- "not like I'm booking those concerts now anyway!"
I have definitely had therapeutic inertia, with a side of "self advocacy" fatigue. Over the past 20 years. After being aggressive time after time the life goals got smaller and smaller. After the last treatment I spent 6 years in this inertia. It was nice not to *fight* all the time.
But I get it. And I tell others that I would not recommend doing that. I achieved a lot towards my goals in those years, plus free of medicine side-effects I was able to overcome some big work challenges, divorce challenges... so it was unfortunately self rewarding. But I need people to know that I was LUCKY, too. And I wasn't looking 20 years down the line. I was looking for the next jazz performance to go well without stumbling or having to cancel. I was looking 20 years BACK. (I do not recommend doing that!!)
Well, NOW I am finally back on a therapy - insurance was hell to sort out and continues that way. The price of my 6 year drug vacation? I don't think we will ever really know, but those show enhancing glitzy high heels that seem as much a part of jazz as the vocals? History. :) Seems superficial but the shows will be different and I *will* find ways to compensate. I say again- I was FORTUNATE that my years of therapeutic inertia didn't result in *more* damage than trade swanky heels for a swanky cane. Not to minimize the emotional blow of reality of needing a mobility device- A lesson in Vanity and Adapting, certainly.
Ocrevus and I *will* be back on stage.
I think Modafinil is amazing! I live in the UK and have had MS for almost 15 years. I took Copaxone for about 8 years but have now changed to Gilenya. So much better to give up on the injections and my MRI's over the last few years have been stable. Sadly though my fatigue has got worse and I'm just recovering from covid which has given me worse fatigue and insomnia 😳 I started off taking Modafinil 100mg twice a day a few years ago which over time was increased to 200mg. This did work really well and I was really happy with it. Before Christmas and covid I noticed though that I was getting worse fatigue wise so I started to take 400mg in the morning instead of 200mg twice a day and it's a game changer! Yes I can be tired in the afternoon, but I have more energy in the morning now to get up and live my life with my husband and 4 year old son. Yes having a young child is exhausting in itself! I used to nurse but sadly had to retire as I physically can't stand for long and look after patients 😕 I do keep myself busy though with volunteering so I can stay active. Thank you for your videos, I learn so much!
Thank you, Dr. Boster! Great point about bureaucracy! Terrible system! Insurances do approve Provigil for night shift workers. May be your patients neededing that med could pick up couple of those night shifts? 😀
You are brilliant. You frequently make my list of things I am grateful for. Thank you for all you do for the MS community. I'm getting my fifth full Ocrevus dose today! Have a nice day🤗🌞
Im finally getting to watching this and I have to say OMG, this is it! There is a reason and purpose for me making the move to Boster Clinic for MS during a pandemic time. I look forward to 2021 and rewriting my life goals since I got hit with MS and hit a wall with past clinic visits with several doctors trying to treat me. I know I cant get back my last 6 years but I know I keep HOPE ALIVE and living with MS.
This makes so , much sense! I am under a working diagnosis. It’s been a year and I have not started any drug therapy. I do definitely have a demyelination disease with lesions on every lobe .... I have vestibular damage and cervical dystonia ... cog fog insomnia all the usual stuff. I am worried that I should be having infusion treatment. But so far nothing. I was told to hope that I have MS because the alternatives were worse. :/ idk 🤷🏻♀️
Thank you for all your information
I so wish my Dr would talk to me and explain things like you do. This journey with MS would have been so much better both for me and my family.
I was very very close to not getting treatment. I even delayed it for a while. All it did was make things worse. Since I started treatment I feel the best I've felt in 10 years. Even though I still feel like crap a lot haha. It's 10x better.
I hope u truly do realize just how helpful you are !
Thank You 😊
You’re welcome 😊
Getting my DMT was an obstacle race. Last one was when they told me that I have to wait a month (after many) to get the vaccines I needed before starting the treatment. So ,after trying to file a complaint unsuccessfully, I just went to that deparment at the hospital and I told the secretary " I have MS and I can't be treated until I get these vaccines, there's anything that can be done?" . Her answer was: "what hour is ok for you come next thursday? At 10, 10:30, 11...?"
This video makes me realize how lucky I am. My first Neurologist knew I was at risk for more aggressive disease it wasn’t even a thought to not choose a DMT right away and when that one failed she got me on Tysabri even though it wasn’t covered yet. I am walking today because of great health care and luck! 15 years in and just now looking at canes.
I'm like so many here with a Dr who pushes through or ignores my symptoms. I often write a list of what's going on and have it on hand for our meetings. 'Sleep issues and weird hallucinations? Not MS. Headaches and vertigo? Not MS. Bowel issues? Not MS, but are you experiencing any numbness or tingling...no? Yeah, not MS. Keep doing what you're doing and I'll talk to you in 6 months.' How many times have I left an email to his office, only to have his assistant write back a condescending note that he doesn't need to address the issue until my next MRI in two months? Why would I tell him anything small when he doesn't care about the big?
I have been following you for appx 2 years & it didn't occur to me that a part of why I love & trust you is that I see similarities in you & my Neurologist. Turns out you trained him!! Dr. Matthew Carraro...thanks for all you help! 🧡
My doctor gave me tramadol even when I told him I wasn't in pain but I was bedridden happy ending though went to the hospital had plasma exchange and now I'm back to my new normal
Again fabulously informative and honest!
I was misdiagnosed with MS. My neurologist would not listen to like she wanted to fit me into her diagnosis. Every time I would tell her about my symptoms she would say that’s not MS but would not look into what I was. She was right, it’s not MS , it is NMO. I just kept getting worse. Lucky I found an amazing MS specialist who listened to and now I’m doing ok not great but ok.
You are a great doctor the world needs more doctors like you!
Thank you for explaining this. I am not on a treatment for the last three years. I think my doctor is wonderful, i have been going to him for about 20 years, when i am in his rooms we tend to chat about life, his kids, property and everything in between. I have a zoom meeting with him on the 3rd of February so i will ask him to please put me on a treatment. I have serious nerve pain so on medication for it but not an actual treatment.
You are such a wonderful doctor! Thank you for taking the time to make these informative videos, they are often a beacon of hope.
Hearing about all he issues with medical insurance and getting approved for a drug, and the cost of it makes me so sad. But also makes me even more thankful for my NHS.
Therapeutic Inertia: that term made so much sense to me. I have never visualized it before but have always recognized the break down in patient focused care. Burnout on so many levels happens and this practice can have some very traumatizing effects. Thank you again Doc!
This was GOOD! God bless y'all out there that's fighting this mess. Thumbs-up Doc~John
I’m 26. Just got diagnosed in July. Have 2 kids under 2. So I thank you for giving us consistent updates and knowledge about this. It means more than you know.
Doctor boster I so needed to hear this right my current neurologist in Michigan is kind of throwing me on the back burner and I feel I am getting through the day but maybe progressing. Very frustrating not having a good team behind me.
It brings tears to my eyes
I love your videos and presentations at conferences. I've had MS for over 30 years and wish you were my doctor. I live in Florida so that's not possible. Please keep educating us online.
telemedicine consultation? 614-304-3444 or visit us at BosterMS.com
I didn’t know there was a name for it. Definitely experienced it at the beginning of my MS journey. I knew I wasn’t relapsing, but docs wouldn’t acknowledge that. They treated me as relapsing for 1.5 years. And in that time I progressed at a rapid constant rate. My fight was bigger than their fight.
As for long term goals, I lost my fine motor. I have a very hard time setting long term goals. Really, the goal is to keep walking as long as possible. But thanks to tremors, stuff I want to do...hold and feed grandchildren is already lost. My kids are only 10 and 7. I’m 35 and have the leg and arm movements of a 70-90 year old. Diagnosed rrms 2017, PPMS 2019. Feel like a lost cause.
Excellent video Doc
Thank you kindly
Thanks Dr B! My life goal is to be able to play with my grandkids. It is a 15-20 year goal, as my children are 13 and 10. I will never give up!!!
You just could not be more awesome. Yes I’ve participated in therapeutic inertia throughout my entire 20 year journey but my physicians were definitely complicit and leading me there. I feel so defeated!
Hi Doc. I think I was part of my therapeutic inertia. After 1.5 yrs of no one able to figure me out, and doing my own research, I was99% sure I MG. I talked to my Neuro doc (military) about it and even though he said he didnt think I has MG, he agreed to a consult at Duke Uni Neuro department. Of course I didnt have it. About 5 months later he said I think we should do a spinal tap, thus I was diagnosed with MS. I should not have had my mind set on MG but I also feel we should have done the spinal tap way before he finally did it.
You are great and honest.
Thank you for the videos! They have helped give me the courage and information that I need to talk with my doctor within the next two weeks during my checkup.
I'm so glad!
You have made a major difference in my having to deal with what at first was a terror. Thanks!
Today's vlog was especially helpful to me. Thank you!
Glad it was helpful!
Your. frank Examples allow me great Chuckles -Bless You good Dr. 👏👍❣️🕊
Glad you like them!
@@AaronBosterMD Am newly diagnosed, So am taking all knowledge in - like a sponge 👍
🙏😭 thank you Aaron for this validating video, it means alot to be understood.
I tried to be good and get on a DMT right away. Put up with terrible side effects for 18 months on Tec and 4 months on Aubagio. My doc was concerned about the risk of infection with a more highly effective DMT. She said that if I get an infection that I might not be able to fight it off because my immune system would be wrecked for 9 months. She didn't seem to think it was worth the risk for someone with very low disease activity. She said we will keep doing MRI's, watch for symptoms and wait. She did say that I could get on something and offered a couple but I was more sold on the don't get an infection and die route. I wish I knew what my statistical odds were either way. I'd rather look at it from a statistical hard numbers viewpoint.
This is my situation..time to get back on the ball...Thanks Doc
It really stinks that doctors have to devote time in wrestling with insurance BS. They should be able to just focus on what's best for their patients. Doctors are..........well doctors, not "arbitrators"!
My own doctor has ignored me for years saying my symptoms were normal. I went private and right away was told it wasn't right and to see a neurologist. I had a massive relapse last year which has not went away and actually got worse at times. I was diagnosed last year but not I have to wait weeks or even months to get my treatment through the NHS. I feel I am majorly suffering as a result of having to wait!
Thank you for this wonderful video Doc! I’ve been thinking about the pandemic and how hard making a decision for patients and docs is nowadays. You’re so right when you said Ms patients have Ms during or after the pandemic and it’s best to discuss with our Docs to know what strategies to take so that we can accomplish our life goals!
best doctor ever u r amazing 👏👏👏👏
Nailed It!💪🏻
Respect doctor
19yrs into diagnosis is when I started DMT. Eight years later physio/rehab appts has dropped to once weekly. A Bakers cyst, worsted toes ankle hip lower back. Been 3yrs @rehab, using cane now falling down banging onto walls. Neuro dr. does return calls.
Alright, finishing my Master’s this summer. Actively working on calming spasms that have been an issue lately. I want to stay as mobile as possible
Thank you so much, this is so relatable 😔
No problem 😊
Thank you for this 🙂
That was great insight. You're right, I have seen it everywhere. What was the term for prior authorizations of needed medicines. Something like "Step Edit"?
LOL I feel so attacked right now...I was diagnosed in September and I started my first DMT at the end of October... took it for a few weeks and I'm just barely starting my new DMT. I really slacked on all tasks on my end like blood tests, vaccines, scheduling and appointment to see the nuero.
So my doctor can't come in and speed out, I write down my issues and needs. She has to take the time to read them and then spend time learning about my issues. I have been doing this for the last few visits and it works great, for me.
Enjoyed this presentation very, very much. Question: How can the “average Jo” pursue pushing back, for lack of a better term,” against therapeutic inertia in regard to our private employer supplied insurance companies? Is there president for same? Is there an avenue through which one can lobby for patient rights and put these decisions back in the hands of both doctors and patients? Any thoughts or suggestions?
After multiple denials of Ampyra I read the fine print on the insurance paperwork-I have the right to appeal to the State insurance board! Well I called my insurance with some questions about the denial & told them “I was exploring all my options” including a State agency appeal. Bingo! Ampyra approved in less than 24 hours, no State action needed! Tho I would have done it
I would suggest, (and I have had to do this same to fight extremely expensive medical bill, and also did back in the day when having to fight for coverage of my Type 1 testing supplies before they were state mandated to be covered by insurance) to draw up a very detailed letter to your insurance company explaining the need for coverage, how it will benefit you and others in the short term, long term, & say why you cannot take other meds, and always mention how in the long term it will provide cost savings to the insurance company, etc. Ask your Dr to proof read to see if they could add a suggestion to your writing & also perhaps add a letter from them as a medical professional as well. Then find out who is in charge of Health Care Administration & CC them as well as your State Representative, Senator, Governor, etc...
@@ritamcd2560 Great job! Insurances are scared of state agencies. In case of state overturning insurance's denial, insurance has to pay hefty penalty to the state, like $5K or so per each case. Employers' sponsored health plans are not regulated by state agencies though...
Currently going through an exacerbation (probably stress related) arms and legs feel like lead, with crampy hands and so tired it's painful, most of neurology have been deployed to other wards... I defo feel brushed off 😩
That flow chart should be a tee shirt.
Great video doctor b. I got diagnosed in April of 2019 and I found you immediately on RUclips and I've been watching you Non-Stop.thank you for your great knowledge like I always told you I wish you were my doctor.
Prior to my diagnosis I was diagnosed with osteoarthritis in both my knees stage 2 they're pretty bad. I worked in construction my whole life , my legs are strong.
they're very strong .
but now since I have a Ms I feel like they're so weak and shaky. And that has a lot to do with exercise because I'd have to sit down after standing for only a couple minutes. Any suggestions on how I can try to walk normal again?
I tried Vigil, it gave me a depression after a while, and it didn't really work all that well. And I had to pay for it myself anyway, I think it was 1 Euro per pill.
Another additional item to add to therapeutic inertia... One I've experienced over and over... Multiple diseases & health issues. Each Dr for each disease continuously blaming the other & sending the patient around in circles back and forth to each Dr! Examples... Patient with T1d & MS or MS and spine disorders or MS & Lupus or MS & RA... Or a combination of say 3 disorders.. Which brings it all back to the therapeutic inertia that you've already mentioned becoming a viscous circle fir the patient. It then will make a patient literally want to give up on the medical professionals completely when they are not listening, helping or taking what that patient has to say seriously.
Insurance company says tysabri is approved every 4 weeks. Dr office says they won't pay twice in the same month. Missing an infusion every year and nobody will help no matter how much I try to fight it and question it.
Im one of them, im so darned scared of life threathning side effects, but my goal is when i have taken the second vaccine doze if i dare 😢im going to try and get back on mabthera.
My neuro (retired now) was able to get the Modafinil easily. He was great at providing the "medically necessary" information for the insurance companies. I stopped taking it until recently again for being afraid of side effects. Now I take 1/2 capsule.
Also afraid of steroids. Rx effects indicate "bone thinning" - DEXA had indicated "severe osteo" just before my spine collapsed in 2019. I'm in a wheel chair a lot of the time but use my walker for getting around the house and doing laps up and down the hallway. Recently went on Kesimpta rather than steroids and seem to be having great results so far. (DX was Jan 2003). I didn't find other therapies helped so stopped everything for a number of years and now am completely frightened by the idea of steroids. Should I be, and if not, why not?
In norway i dont have 1 doctor i have five on rotation... its hard to get the same info a cross 5 times
But the neuroscience nurse has told me she is not putting me on DMT ?? I was diagnosed 3 years ago and also have Ankylosing Spondylitis and do not take any medication for anything at all. Recently I have started using a walker as cannot hold my core for long. I am exhausted as soon as I wake up in the morning and have cognitive issues so bad I cannot organise myself...am I not a good candidate for DMT's?
I'm so confused because I feel I'm being left to fester and it's exhausting trying to lead a relatively normal life with this cloak of heaviness.
The appointments I have last 10 mins every 6 months and there is no MS centre or specialist where I live.
It's not good feeling abandoned 😥
Thanks Dr B 👍 I dutifully reported a worsening of symptoms over email and got told 'see your GP, that sounds like it might be BPPV' and nothing else. healthcare here is buckling under COVID, so feel I can't expect more. Is that inertia on all sides ? (Protocol here is 'no steroids unless your walking is affected or you are totally incapacitated by symptoms - which have to be 'new''
This is all making me so angry. There is no wonder there is not much progress toward fixing MS. Dr. B. Try your best to make these therapies affordable for all of us.
If it changes the trajectory forever re: early treatment, does that mean that I’m just screwed, having been diagnosed probably 10 years late? I went straight on tysabri after diagnosis, then HSCT.
Oh and my goal is to be able to create art in some way until it’s time to go.
Best way for remyelination?
Is money can cause therapeutic inertia ?
I want to buy a piece of land
I want to buy a Camaro
I want to learn guitar
I want to make a difference
I want to feel normal again