Multiple Sclerosis Vlog: Why am I worse?
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- čas přidán 15. 06. 2024
- In this Multiple Sclerosis Vlog, I answer the question "Why am I worse?"
Howdy, and thanks for learning about MS with me, Aaron Boster. I'm the founder of The Boster Center for Multiple Sclerosis, where we care for families impacted by MS from around the globe. We accepts all major insurance carriers and are actively enrolling several clinical trials! www.BosterMS.com or call 614-304-3444 to schedule!
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COMMENT with your thoughts and questions on "Why am I worse?" below! I look forward to reading and responding!
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VISIT us on the web: BosterMS.com/
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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 (and in this case, "Why am I worse?") 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!
Best MS advice anywhere to be found,thanks!
Dealing with numbness and tingling in your hands and feet. Tips or suggestions?
#WeHaveMS #StrongerTogether BosterMS.com
@@AaronBosterMD Thanks for a listening ear,providing research and believing your patients!
Comment for future topic. Immunoglobulin levels. What’s too low? What should be treated with IgIV? And are those transfusions really weekly? Monthly? Thanks!! Now I’ll go look to see if you’ve already covered this, haha. Thanks for everything you do.
Thanks for these videos. My MS journey has started 2 months ago when I got diagnosed with PPMS in Amsterdam. The last period has been very unpleasant but atleast there are answers (and a LOT of questions) to what is going on. And now to approach it best with my medical team. Started Baclofen 3 weeks ago, I hope there will be some improvement in daily mobility and daily life..
Thanks a lot again for the inforrmation provided Doctor Boster. It is really insightful.
You really are a fountain of Knowledge. I have not seen my Neurologist in 2 years and next appointment is Aug 22. I have had 2 appointments by phone. I explained recently how I had all these increasingly debilitating symptoms and I was told that they are not not MS related because my MRI is stable..eh hello..I know my own body. This is a very lonely disease.
I am a medical student with MS, just diagnosed in March. I was just chatting with my research team and our adviser yesterday about some of these very things. What a great 10 minute summary of what life with MS can be like! Take home message: PREVENTION. The challenge is convincing people to do it, and do it with high compliance when there is little to no immediate gain to motivate them to keep going (I was a rehab personal trainer for 8 years, boy do I understand this).
Thank you so much for this video. My latest Neurologist appointment yielded no new lesions so I couldn't understand my progression. She's a MS Specialist and never touched on this explanation. Life is getting so much harder for me and now I understand why. I wish I was closer to be a patient of yours. Many thanks from New Jersey.
Im in NJ also where do you go? So many neuros never address obvious progression. They make us feel neurotic because they are not acknowledging increasing disability.
One neurologist told me I’m just deconditioned.
I got a second opinion. She said I haven’t had another attack, but am clearly worse. Now I am going through a long process to figure out the next step.
It's frustrating because for the outside world I'm not worse, I don't have new spots, my EDSS is the same, apparently everything is the same but I can tell that it takes me more effort do to the same things. I have concentrate and put more attention on what I'm doing if I want to do it right and not having accidents.
Same
Thank you. Good explanation. This has been a problem of mine for years. The nurse would call me after a scan and using the clinical impression on the summary to say “good news, nothing changed.” Oh really? Based on this nothing has changed pretty much forever. I now can’t walk, run, work, mow my grass…..). Does that sound like no change? This is the reason I’m a patient if the Boster center even though I live 1000 miles away. Thank you dr. B!
Deneen, pump girl in Dayton. Great video! Best part to me was when you talked about treating spasticity. In 2017 I got Baclofen pump thanks to you. You hit the nail on the head when you said QUALITY OF LIFE. My walking is still very challenged. But the reduction in pain thanks to the pump has improved my life more than I could have ever imagined !!! You changed my life, Dr Boster. AMEN. :))
I haven't been diagnosed, but I'm really struggling. A couple years ago, I had a brain MRI that showed nothing, so I was told I don't have MS.
Then a week ago, I saw a new neurologist. He talked to me like I'm dumb and told me I have convinced myself. I said no. No. No. But he wouldn't listen to me! I have NOT convinced myself I have it. I've convinced myself it's a very real possibility.
He told me that with MS, you have an attack, then you get better. Blah blah blah. I don't know about attacks. I don't know if I've experienced that. The only time I've ever felt better is when I'm sick and get steroid shots in my butt. Then part of it feels better.
I struggle with walking. I cannot walk far. The more I walk, the worse I get. But "because I walked into his office the way I did" because I forgot my cane at home with my cognitive issues, and I keep forgetting everything or where I put something down or to grab something I need before leaving, "I don't have MS." I told him I want tests to see. That I was trying to ask for a spinal tap. And really, I want one because if this isn't MS, there is something else wrong.
He diagnosed me with fibromyalgia. I have wondered about that for years too, but my understanding is everything going on with my legs, fibro doesn't cover. I have degenerative disc disease in my lumbar spine, and some believe that is what's causing my hip and leg problems. "That the little bit that is seen in that MRI wouldn't cause what I'm feeling." 🙄🙄🙄
I'm just so frustrated because I keep hearing things that sound like MS is a very real possibility, and I know I need treatment to help everything and stop the progression if I do, but I cannot get these doctors that have the power to find what's wrong to do what it takes to make double sure it isn't. 😭😭
He said that my words told him I don't. Even though I suck with words, and I can't get out what I want to say right, that doesn't matter. I tried to explain it to him, and he just fought me. Wouldn't let me talk.
Then he was like, "Since your biggest complaint right now is the cognitive issues, I'll send you to have a test. If the result is abnormal, I'll have to eat my words." Apparently there's a long line for it, so I can't go till like October.
But whatever, I've been in pain, gradually getting worse since 2015. Started really trying to figure out what's wrong in 2017, what's a few more months to find out if my cognitive issues aren't all in my head? 🙄
I really hope you have your diagnosis confirmed and if it’s MS you get on a DMT. If it’s not that you have found any other diagnosis and treatment.
Thanks Dr B, not only for your knowledge, but your empathy 🙌
This actually made me feel better, that I'm not just imagining things. Hi from Malaysia. Thanks for such an informative video.
Same
Wish you could be my doctor here in Georgia! You are so gifted at what you do! Thanks so much for the videos and information!!!
It is absolutely worth knowing & understanding ,Dr Boster. I’m 71 year old female and along with aging symptoms I have had worsening of spasticity, cog fog, all over weakness and almost no mobility EVEN THO I’ve had No new lesions for about 10 years. Lesions seemed to have stopped once I was put on Betaseron and then Ocrevus. This info helps because I thought I just wasn’t trying hard enough or it was all in my head. Thank you so much for this info.
I appreciate this. My husband hasn't had any new lesions since 1995. None. But he's EDSS 8.0.
I feel so heard. You’re such a blessing!
Thank you Doctor B! This is one of my favorite videos. It is so important to hear about treatment of depression, spasticity, and cog fog! Keep up the great work!
My MS was diagnosed in 1980. I have learned more about MS from you
than all of past neurologists combined. Thank you for these information sharing videos!---Lynda S. Maryland
My neuro and I were just talking about how amazing you are. I’ve learned so much from your videos about my disease. Thank you!
I found your channel by accident and have been listening closely as there seems to be a disconnect from my GP and my Neurologist. I am 68 and all of this came in so sudden. I wish you were local would love to have the opportunity to talk to you
Thanks for explaining it in simple terms for us simple people. This made me totally understand how I've progressed to SPMS
Excellent video. I would like to add just another important cause: side-effects of your medication!
I was unlucky enough to have the uncommon side-effect of increasing fatigue and cog fog on my first DMD. It got me from a 40h+ work week and a very active lifestyle to sitting home, barely able to just walk my dog.
I got off the medication and within a month my energy came back. Now waiting on approval for another DMD.
Thank you so much for caring...you are a gift to the M.S. community. Thank you
Thank you for the video of pira. Always in the back of my ms mind when I have days when I struggle despite being 5of 5. Doug coffee in hand from Lyndhurst, Ohio.
Good morning Dr.Boster.I'm currently undiagnosed and suffering from many MS symptoms.Your videos have been very helpful for me to understand better these symptoms.I'm in Mississippi and struggling to find help.
Thank you!
Hi iam fron North Wales 🏴 i was daiagnos with MS 20yers a go my ms hit me har i was in hospilal for 2wecs i cwd not fil my lower haf of my bodi hatw lyrn to walk agein that wos fyn 😢.20yers later i am now lwsing my fission i count my self feri fortunate that I still mobile with a cein .i haf bin watching you on CZcams and you have been a great help i ynder stand y bit more about Ms thank to you ❤
Hi DR. Boster.
Thank so much for explaining this. This is exactly what I have going on now.
I could not understand what was happening and was getting very frustrated. I was being told I have no new MRI activity so every thing should be alright, but all kinds of things were getting worse. You explained this so well and now I know what is going on. Thank you for the clarity. I now have a new term. PIRA! Your analogy of a hole in the wall was a perfect explanation. Thank you for all you do. You Truly help fill in the gaps for me and others between appointments.
I look forward to these videos more than I do any of my regular doctors' visits.
I needed to hear this
I just got out of hospital for corticoïdes in Rabat and the doc says about my mri that the lesions didn’t « reaaally » evolve lol but the feeling Is it really worsened lately, months ago, walking outside is hellish, luckily I found a gd center in here and I’m going through the right steps this time to find the right treatment. Thanks Aaron for your videos, always interesting 🙏🏻🙏🏻🙏🏻The mood thing and toxic daily self treatment mentally because of symptoms would be a gd topic
I love the effects, Dr. B!
First of all, big greeting from Europe, Bosnia & Herzegovina! This video is really informative, and it comforts me with my question - why am I feeling sooo worse despite better results on neurological exam (my doc decreased EDSS tp 0) and clean MRI. I get exhausted so easily, physical fatigue is sometimes overwhelming. And based on your video, I can name the culprit: sickness of my daughter during 2020, terrible corona stress and anxiety related to it, lack of excercise (because of corona I don't go to gym anymore). Thank you so much again for the video!
You helped save my life doc! I really appreciate you sir!
Appreciate all that you do DOC
I really must make sure you know how much I appreciate your channel and the work you do.
Thank you for this video. Great explanation 👍
Thank you for sharing this!
Thank you Dr Boster, as always informative, empowering and reassuring 🔥🔥🔥🔥
Thank you for being an honest and straightforward neurologist. This video addresses so many unusual symptoms and challengjng realities we deal with that are often dismissed by our doctors.
Excellent analogy!
Thank you for giving us this valuable info.
Simply the best, thank you for your time and advice
Thank you, your video has helped me a lot. I don’t feel like I’m going crazy anymore!
simple yet helpful. Thanks.
You are great, I love listening to you,so many explanation! Thanks 🙏
Thanks for the information learnt alot and look forward to next Monday 😀
Thank you. I appreciate being sent back.
Wow Dr I’m amazed it’s so weird when I have an issue you always seem to talk about it. Thank you
I have had RRMS for 24 years but diagnosed with SPMS in 2018.
Thank you Dr. B!!
Great explanation!
I am so grateful for all your advices. Dr. Boster. Like really, Thank you!
I live that you do this is very helpful
Thank you from Brazil, Dr. Booster! :)
Thank you for all you do. Newly diagnosed in the UK.
Thank you for your videos! I'm watching from Halifax, N.S. Canada and was diagnosed just over 2 years ago. You have helped so much, I even quit smoking because of your advice.
W🧡W!! Another excellent video, thank you Dr Boster!!! 🙏💝🙏 I needed this one today!! 🎗🎗🎗
The video-effect for cog-fog is a perfect fit
I love the fact that you were talking about this this is so so important because I am the same way I don’t understand very confusing thank you you’re the best doctor ever! Thank you Dr. B
Great video Dr. B. That's one of the most common "MS misteries"
Thank you so much! Something that is never really explained when I ask in my hospital trips, thank you for making it easy to understand and thank you for your work! i don't think there are enough thhumbs up options for your videos!
Grateful for your talk, will try n get on live next week! I have talked to my Ms spec about this before, but perhaps not optimistic enough or cognitively robust enough to get it! Many thanks, this is like therapy to me
Always helpful advise, really wish i had known about these things at the beginning of my diagnosis! Once i started a muscle relaxer my world suddenly opened up again! Took away the anxiety of planning something and worrying about how much my back could handle before spasming. Thanks Dr B, much love from Wales, UK
Thank You For Sharing This Video With All Of Us.
Another excellent and informative vid DrB👌🏼
I’ve already shared the mri vids with my husband and son and it’s so nice to know their comprehension of what my having an annual mri is all about! This will be another for them to watch.
As someone who also has lots of spinal lesions I’d have liked for you to reference the role cord lesions play in PIRA.
I would also like to access your ‘ask me anything’ but find that I’m vulnerable to my cog fog taking a hold, so it’d be really nice to have a list of the questions covered/list of contents so that myself and others can watch your responses to what’s most pertinent for us, as opposed to the whole hour or so.
Appreciate all you do❤️
This is fantastic! I have been struggling with this issue for the last 8 years and my neurologist could never give me an answer as to whats going on! And still wont treat me! This is very clear now thank you!
The "Structural Damage" could not have been explained any better. Thank you Doc!
Another great video as always. Had a nasty relapse right before i saw you had trouble walking. I am back to walking and running marathons and hoping and praying that i do not have the walking issue come up later.
Aaron
Thanks for sharing
I don’t know much about Multiple Sclerosis so thanks for sharing all this information
Thank you for sharing this video, Dr. B. I’ll have stuff to talk with my neurologist later this year
Hello from Texas, thanks for another great video, I especially like the casual look this morning.
Excellent video doctor. Now I am clear about the concept of PIRA. Thank you for educating us.
Thank you Dr Aaron Boster MD for all of the information you provide.
I’m from Manchester England 🏴 and having MS is hell in a hand basket.
I’ve had it now for over twenty five years. I’m still figuring things out, with your help.
Thank you again 😘 xxx
Thank you for always empowering with your information. And It is a great start to avoiding another he ‘Manic Monday’! Cheers!
Hi Dr. B🙋♀️, from Michigan. Very important info, I think my MS symptoms are undertreated, and I will definitely mention this to my neurologist. I am so grateful for your channel, thank you and have a nice day😉
ohmigosh!! I appreciate the "shotgun" story! THANK YOU DR. BOSTER you are amazing 🎉
Hi from historic Camden, SC!
Thank you for the awesome info! Time for an honest convo with my Neurologist regarding cog fog. Thanks for all you do!🙂💪👍
Absolutely brilliant Aaron. Thanks so much
Glad you enjoyed it
Thank you Dr. Boster. Amazing the Neurologist I see couldn't explain that to me. When I questioned about thinking of a different med, one that would do something like protect me more rather than just keep me from possibly having a exaserbation (12 yrs on generic Copaxone), I was told there was no reason to do better as there were no signs I was getting worse (just feel it even though I have turned my life around w diet, weight loss, and exercise...which I had hoped I would have seen some improvement). Am seeking another consultation; sure wish you were near. Keep on doing what you do!!
These are so helpful thank you!
Thanks so much for this clip! It makes me feel more confident that I made a good choice to start taking Mavenclad. Even though I would say my MS is not anywhere near as bad as it could be, I have definitely seen worsening …
This is really interesting to know and may explain a few things. Thank you for the information.
Some days, the only reason I get through the day is because I know I have to! I feel myself going downhill through fatigue, my legs not working, generally feeling like crap far more often than I used to. So I have to give myself a sound kick in the arse to get going and keep going. Working with Navy SEALs 40 years ago (not a SEAL myself) taught me motivational skills that I thought I wouldn’t need after discharge. Boy was I wrong!
Thank you so much for this video! This is what I'm going through right now with mobility issues from what I assume is leg spasticity. Now I have a better understanding of things for when I see my neuro in a few weeks. 😃👍
Good morning Dr.Boster:-) I hope you have a Wonderful day!:-)
So true !...and never mentioned up to now! 🙏
Thank you very much. This is a wonderful forum.I've been poorly pretending that I am not depressed for 4 years. I listened to you tonight & will now re- address this. I did try @ 4 meds. roughly 6 yrs ago. No luck. But I also hv to push myself to get out & walk on the beach daily. I've bn on this couch too long. If anyone reads this and can reference any success with a particular antidepressant, pls drop me a reply.. I hv to go bk & dig up my rpts. & see what meds I hv tkn. Txs again Doc ! It's so clear that you really care about this fight.
I’ll be watching for the next live q&a! Knowledge is power!
Today is the next one.Yay!
I’m happy my fiancé is now following this channel
Thank you thank you thank you!!!
Dr Aaron, I have been following you for 3 1/2 years. One week before I was diagnosed with PPMS. I have progressed at an alarming rate in that time. There are no treatments available in Australia that are covered by the public medical system (Ocrevus , costs approx. $54k per session). My symptoms fluctuate I can have poor vision in the right eye and 2 hours later it will switch to the left eye (I have been tested and have 20/20 vision) I do understand that heat/cold and the amount of sleep effects how bad my symptoms are. I am old, have lived an amazing life doing things that people can only wish for. That being said It would be a great service to explain how Primary Progressive Multiple Sclerosis occurs and what may be next, if there is any research and what natural developments may be undertaken. I am currently on Biotin and a variety of vitamin supplements as well as CBD oil (the best for calming down the severity of my symptoms). I would love to hear your feedback.
Thank you
Thank you for this very useful information. It explains a lot. I live in the UK. My first symptom of MS in May 1991 (was 18) never completely recovered. I had retrobulbar neuritis in my left eye (am left handed). I woke up with it, went to college to do my A level lessons. Then went to the GP and eye hospital that afternoon /evening.
The vision is not perfect, but it did recover to an extent. I am completely colour blind in that eye, and the vision is not quite so clear, even with spectacles on. White becomes a light grey and black becomes dark grey.
I do fight my symptoms or problems and won't give in.
Thank you for everything you do. Best wishes
Hello from the Czech republic!! Your videos are so full of information! Helped me a lot to decide about my treatment! Is this progresion/worsening something what will happen eventualy to all of us, or it vary from patient to patient? Thanks a lot for your work!!
Very good informative video for SURE! You're an amazing human, that's what makes you such a good Doctor,,thank You Sir ~John
Thanks 🙏 from Northern Ireland
Thanks for watching!
Dr. Boster thanks for all the great advise.
I'm going to talk to my doc about worsening.
Greetings from Thunder bay!!
@Dr Boster.
Thanks for everything!! We'll be home by 7:45pm.
Thank you this is very good explanation. My last neurology appt was very confusing. I kept thinking why am I feeling this way if my MRI showed nothing new. It was just of my brain and they didn't do spinal cord. This makes so much sense now.
Awesome awesome awesome video….
Thanks for explaining PIRA, it happened to me, and as my dr explained its just a natural path of PP. I was not so happy about it but at least i know whats going on. 👍👍
Thank you for this, and every other video! I’m recently diagnosed and have a problem in explaining what MS is doing to me. Even my husband doesn’t know how to help. Have you done a video that we can share with loved ones so they understand what we are going through and how they can be helpful and supportive?
Reusing as education
Good evening! From Fort ST John, BC Canada 🇨🇦 Thank you for everything you do for all of us. We have learned so much from you and all your UTUBE videos. I just was wondering if you can do a video on UVEITIS please. I haven’t herd or met anyone that has UVEITIS . And not much information on it that I can find.