MS Vlog: Does Age of Onset Impact Multiple Sclerosis Prognosis?
Вставка
- Опубліковано 5 сер 2024
- In this video I answer the question, "Does the age at which you are diagnosed with MS impact the disease prognosis?" To learn the answer, start watching this vid right now! The Boster Center for Multiple Sclerosis accepts all major insurance carriers and accepts consults from around the globe, both in office and via telemedicine. www.BosterMS.com or call 614-304-3444 to schedule!
**********************************************************
COMMENT with your thoughts and questions below! I look forward to reading and responding!
**********************************************************
SHARE this video: • MS Vlog: Does Age of O...
***********************************************************
FOLLOW on Twitter: / aaronbostermd
FRIEND on Facebook: / aaronbostermd
SUBSCRIBE on UA-cam: / aaronbostermd
VISIT us on the web: BosterMS.com/
***********************************************************
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 education 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!
It is difficult not to look back and wish that I was diagnosed when my symptoms first began so I could have had treatment. But the past is the past, and I am doing what I can now! I am 4 for 4 in my MS fight, each day can be difficult, but all we can do is keep on keeping on! With the help of your channel, it does make it easier. Thanks Dr B, have a good day🥰
#StrongerTogether #WeHaveMS #MakeMSBoring #4for4
That is why I want answers!!!! I fight things better when I know what they are. Like cancer. 18 yr survivor
I got diagnosed in my 50's and have a milder form of MS. All I can say is that being diagnosed when older means that I had years that I wasn't aware of my MS and could dismiss some of the symptoms as age related. One of the worst things for me is the constant anxiety that comes with not knowing how MS is going to impact me.
Thank you for this discussion on age related MS diagnosis. I was dx at the age of 61 after 15 years of searching for an explanation of many symptoms. My neurologist, at a major teaching hospital in Philadelphia, scared the **%# out of me. He told me that based on my symptoms and MRI results, I would be wheelchair bound in 3-4 years based on his experience. I am doing everything I can to prove him wrong! Moderate exercise, clean eating, lots of hydration, and Ocrevus. Needless to say, that person is no longer my physician.
Hi Robin, I was diagnosed 11/20/19 at my age of 65 my first doctor was very short to the point and wanted to treat me immediately with Ocrevus after a spinal tap indicated MS, along with my MRI. Wanting a second opinion I went to OSU hospital and that doctor was very surprised to be diagnosed at my age. He has taken a cautious approach and has done some more testing. I believe I will be taking Tecfidera. My symptoms began a year ago on 11/1/2018. My vision is being compromised and the numbing of my hands and feet are causing pain. I'm taking Gabapentine and Tizanepine for pain and swelling. My neck spinal cord is very swollen, strange.
I am a 78 year old woman 140 lbs. diagnosed with MS for the first time last week by MRI. The MRI showed 4 plaques and some demyelination of the nerves in the brain. I also have cervical spinal stenosis and my fingers have some paralysis in both hands. My eyes are affected as well. My right eye lid closes without my trying to close it and my vision is blurry. I also have become a bit awkward walking. I believe I had Ebstein Barr virus in my 30’s but it was not diagnosed by a doctor.
#StrongerTogether #WeHaveMS #MakeMSBoring
I'm not sure if I have ms. I have been going through testing since June. I have found your videos to be much help with asking questions at the doctors office. The process is very frustrating. Just want answers. I've had MRI's cat scans, emg, blood work, physical therapy, n going in for a sleep test. They found a small spot of white matter on my brain a bright lesion at the top of my spine and two small black lesions in my neck. Other than that the only thing they have found with blood work n looking at past results is that I've been low in vitiam d for a long time. Everything else has come back normal.
Another point is that someone diagnosed at an early age in 2020 may have an advantage over someone diagnosed at an early age in 1980, because there are many DMD treatments available that weren’t available 40 years ago.
Just diagnosed during pandemic at 48…. I’ve already outlived so many friends that each day is a bonus with or without ms…… try to have a great day y’all..
I just love you doctor. You helped me and my disease to be friends. Yes we’re happy! I wish I could tell everyone living with MS to listen to you are such a lifesaver! Every single video is worth like a valuable book. You helped me choose my DMT You informed me how to live with it by explaining all the methodology of it. It’s my hope that I can meet you one day and appreciate all of your work 🙌 thanks!
Thank you Aaron, very interesting. I was diagnosed aged 48 but am doing everything I can to stay healthy, walking 10,000 steps a day. Am on Ocrevus. Hoping at least to slow down progression.
As soon as I saw the notification of this video, I stopped everything to watch it!
Thank you to Georgia, for asking the question. Thanks to you for the clarification.
I was diagnosed with PPMS at the age of 60. My initial symptoms, I believe, started at least 5 years earlier. I think uncertain prognosis is one of the worst effects of progressive disease. I’m doing everything I can to fight back! I think I’m staying one step ahead of my MS, although I do have low moments. Forums like this help by providing up to date information and reminding me that I’m not alone.
I was diagnosed at 46 but they say I have had MS for decades. There were a few signs that were misses but for the most part my brain did a hell of a job re-routing around the damage.
same here
Me too. I was diagnosed at age 52 and I believe I benefitted from gluten-free cooking for family with Celiac. And I stayed active, thankfully. I believe my very first symptoms were in 1990 when I was in college and played college volleyball...more than 30 years ago. I rationalized so many symptoms through the years.
Thank you for your video. I was diagnosed at the age of 13. I’m very stable now 19 years later bc I been on DMTs from the beginning. Hope it continues after having kids etc.
I have thought many times about how my Journey with this illness has been affected by the fact that I know I have been experiencing Ms for nearly 30 years 29 of them untreated. And I really am a believer now that I'm in secondary progressive MS that though I do take a modifying drug. And I will continue doing that. But I really with my whole heart believe that because I went so long undiagnosed and untreated the amount of damage that was done is obviously something that can never be undone. And I really do believe because of my age changing my medication to try to improve my situation is probably fruitless. Because of the amount of damage that was done while it was being untreated. I actually from time to time question whether I need to be taking any medication at all because I really don't think medication is going to change anything in my situation. But I have watched many of your videos and I do understand the importance of taking the medication so I will continue doing that. But I wouldn't be honest if I said that I don't really feel like changing medication or going to something stronger or more intense or whatever is actually going to make a difference in my situation. MS has been more complicated for me to figure out than I ever thought it would be. And I spend most of my days being overwhelmed by the thought process.
#WeHaveMS
I went undiagnosed too for many years. It was a shock for me when my doctor told me that I had bilateral tremor in my hands and that it sugested the cerebelum was affected. I remember having these "shaky hands" since my teens, maybe before that. And it's the same for other symptoms. I think I might have had my first attack when I was maybe 12. I didn't get diagnosed until I was nearly 39, so it's a long time to recruit damage. It's hard to accept that. There are a lot of "what if ". I'm personally more inclined to stronger medication because I think that the time to mess around it's long gone.
Sammi, I think most of us, myself included, have spent years undiagnosed and could have been in a much better place now. I'm sorry you feel so bad, but remember that disease modifying therapies will never make you feel better, but will just avoid you getting worse. Wishing you all the best.
Here's a crazy response you probably weren't expecting and it has absolutely nothing to do with this video it has everything to do with you. I have noticed recently on the multiple sclerosis website that in a lot of the posts that are being written by people on that website patients people with MS. They are making comments about your educational streaming things they've heard and learned in your videos they are now passing on to other people on the website. And I think this is amazing that you're very talented ability to describe the disease and help people to understand what it is and what it's all about is reaching way farther then you probably expected. I am personally so proud of you because you are having an impact in all the right ways and I hope people keep continuing the information that you share because you have such a unique way of doing it so that we all actually understand it. So thank you so much for having started this website and for reaching out to all of us. And beyond all of us.
My thoughts are similar to yours. I'm still going downhill on Ocrevus but I'm just not prepared to take the leap to Lemtrada. Too many side effects for my realistic expectations. I focus on other things like pt and exercise.
Good morning Dr. Boster. Thank you for answering this question. this is very relevant to me having been diagnosed at the age of 56. I can’t wait to discuss this with you in clinic.
Dr. Boster, I feel an educational video about what a day in the life of an MS patient looks like would help family and coworkers understand MS. For example when an MS patient seems “fine” on a particular day at work or at home, people think they are “cured” or that they really don’t have any symptoms. So many can put up a good front for short periods of time, but it’s what’s really happening when they are out of public view that should be talked about. Education is power. Can you help?
This would be wonderful!!!!
Diagnosed at 26 which i feel is young and i didnt realise you can get MS at any age but it wont stop me achieving what i want to in life.
I was diagnosed at age 29, but I remember having symptoms since age 19 😢
I am sure that I was having neurological symptoms like dizzyness, cogfog ,blurry vision many, many years before I got diagnosed with MS. No one thought about neurological causes. I said it was from being tired from work, being a single mom and full time working and so on. I am sure you know stories like mine.
I was diagnosed 7,5 years ago after an optic neuritis. When I think back to the first symptoms I guess it was in my early thirties.
Being 4 on 4 is helping. YOU are helping with education!
Keep on educating us,please! sending my best regards, Britta
I had optic neuritis aged 37, in 2001, had MRI and was told it wasn't MS as only one sensory episode. A year or so later I developed chronic uveitis. I then noticed pins and needles in my fingers daily on waking but a neuro consultant said it wasn't MS (I think she may have been wrong...) Fast forward to last year when I had very sudden weird sensory symptoms in my feet and legs, which lasted about 4 months. Finally my new and very good GP referred me to Queen Sq here in London and I was diagnosed with RRMS aged 56, less than a month ago! Some regrets that it wasn't picked up on sooner, but overall I feel good. I have recovered from the symptoms last year (well, outwardly anyway) and am about to start Aubagio. I think I'd been expecting it, but it was still a bit of a shock, especially the idea that damage / inflammation could be happening without symptoms. One of the trickier things about being diagnosed in my 50s is - am I tired because I'm 56, or is it MS? Am I slightly losing my balance because I'm 56, or is it MS etc. I'm slightly worried that Aubagio isn't the 'go hard' approach that you advocate, but at the same time I'm comfortable with my decision. Meanwhile I'm going with QiGong, open water swimming, acupuncture, meditation, vitamin D and a good healthy diet (no sugar! no processed food!). Oh, and luckily, better late than never, I quit smoking 3 years ago. I've been a very stressed out person all my life (hmm, did I cause this?) and I now really really focus on being as relaxed and zen as I can. Thank you so much for all your amazingly helpful videos, think I've watched nearly all of them!
Diagnosed this week. So thankful I found this
Diagnosed at age 33, but symptoms since I was in my early 20's. I am 50 and now secondary progressive.
Now that I look back in time with the information I have today, I had neurological symptoms at age 11. Fast forwarding to age 35 is when my symptoms were very definitive. I’m doing pretty darn good following the 4 for 4 program thanks to you!!
As a nurse at a nursing home, learn alot obout MS. Thank you for you channel!
You are awesome.
I’m a guy with PPMS, symptom onset when I was 22/23. I struggle with depression, especially now with the COVID19. I feel overwhelmed.
Overwhelmed with the COVID caos, I mean. Ocrevus is great (!!!!!) for me, but the current situation of my work life is chaotic and uncertain.
you're NOT alone I Loffys. #StrongerTogether #MSCOVID19
Hope you're doing better now that covid has calmed down. Wish you many good days
I have been having symptoms since my teenage years. I'm now 62 and still searching for a dx. I hope to see a neurologist soon. Thank you for helping me to find answers.
How are you?
My sister (U.S.), who was adopted at birth via closed adoption, was diagnosed with hereditary Spinocerebellar Ataxia at 26. One neurologist dxd her with a recessive form of SCA (she has a daughter so we were grateful for the recessive part), another neurologist dxd her with an autosomal dominant form of SCA and years later, far later, physicians (including her hospice physician) dxd her with Progressive MS. She received no treatment for neurodegenerative disease in her entire 20-year journey with it, and it may be due to the fact that there were/are no treatments available for SCA. Earlier in the journey, she also might have refused some necessary MRIs (she was claustrophobic) and I know she didn't have a spinal tap done, etc, so maybe SCA was the dx she chose to accept. She passed away at 46, and although I obviously can't come close to pinpointing what she had (I've researched both progressive MS and SCA to the hilt and remain completely clueless), what I do know is, her illness comprised a horrendous, soul destroying, dignity robbing, muscle wasting, paralyzing and painful 20 year struggle. From head to toe, her body betrayed her. I'd never seen anything so cruel and degenerating as my sister's condition, and I watched my grandfather die of ALS. Meanwhile, after my sister passed away, we donated her body to research in hopes that discoveries can be made from it that will help advance treatment in some way for neurodegenerative disease.
Thank you for video, Doug coffee in hand from Lyndhurst.
You are welcome Doug! #StrongerTogether
Will you host more live stream Q&A sessions with us like last MS Awareness Month? Regardless, thank you 👏👏👏and God Bless you 💖💖💖 for continually educating us about MS!
Hi Dr Boster! Your information filled UA-cam‘s are immensely helpful and sincerely appreciated, thank you! Wondering if you might be able to create + post a UA-cam specific to people diagnosed with MS in their 60s + DMT treatments. Interestingly,, I was diagnosed with parsplanitis at age 29, recall having occasional unusual vibration sensations when I turned my head in my 30s and 40s + was diagnosed (brain/spinal MRIs + LP) at age 63 … w/ MRI evidence of T7 transverse myelitis at age 60.
Yes please do more informative videos about possible effects of the Corona Virus and MS. Are there any additional precautions one can take? What if you get it? What to do?
Thank you
Hi Aaron thank you for this channel I find it particularly interesting. Can you talk about different types of workouts and how they benefit your disease progression. I like to learn all I can so I understand why I am doing things. I personally now go to the gym 3 times a week and a major part of my session's is HIIT and I would love to know more about HIIT and why it is supposed to help with neurological issues. Thanks again. Eamon.
I haven't been diagnosed as of yet, but there is definitely something going on. Had a really crappy GP at the start of this journey. Neurologist a year later said its diabetic neuropathy and won't see me until it has been over a year from last appointment (4 months away). Now on second GP, he seems to care, is trying to narrow down the possibilities through testing and medication trials. Diabetes has been reversed and lost over 40 lbs, but the symptoms are still progressing.
It may not be MS but there is definitely something neurological going on.
Thanks Dr. B for the information you put out there. It is helpful to be aware even if that isn't the dx. Have a great week
Oh yeah, I will be 52 this year.
It used to not bother me if getting older cause living a long life is a blessing now I'm so worried about getting older every since I've been diagnosed with MS I'm so very scared
My symptoms started severe and was diagnosed right when it started at age 33. I was having numbness and weakness with weird symptoms. Had optic neuritis and didn't know it. Only noticed grey looking vision. Went to a neurologist and he noticed I had nystagmus when I followed his pen. Had MRI/spinal tap and was shocked at MS diagnoses. My nystagmus got bad quickly. I've had systemic lupus for 20 years. Had graves disease at 15. Also endometriosis. I have compound mutations in my mthfr genes from both parents. My neurologist was wondering why my health was so bad and tested me. Apparently it can cause many things. I even had Alice in wonderland syndrome when my MS first started. It started with a bang. But weird thing is the last almost two years its been calm. Even my MS hugs have calmed. But I stopped wearing bras, empire waisted dresses, and headbands. My lupus is still super active. I will say at first I had to see multiple doctors after my Neuro was pretty sure it was ms. But he sent me to a specialist at Vanderbilt to make sure it was ms and not my lupus attacking my brain since it can mimic ms. Worst part my nystagmus got severe. I couldn't even watch tv my eyes jerked so much. I started CBD oil without thc and it helped calm it. After a year they finally started to calm. Still flares up every now and then. Just nervous and stress over when my next flare will be since its calmed down. Feel like its building up for a big one.
Hindsight!!! So, are all the times I fell in my 30s, and the multiple episodes of my arm going numb in my 20s really onset?! Who knows, and does it matter?! I wasn’t diagnosed until age 52, and am grateful that disease progression had been generally slow up until that point. Would I have been on DMT earlier? Absolutely. But oh well. Thanks for answering questions and anticipating conversations.
I was diagnosed in my late 20s . My sister 6 yrs older was diagnosed 5 yrs before me, her early 30s. Although we both showed signs much younger. Different lifestyles and different treatments, hers has progressed much faster. But now in our 50s I'm catching up.
I don’t know if this has been answered already, but here is my question. Once I started on Tysabri, I had terrible reoccurring urinary tract infections, one after another. I tried everything to prevent them but they only stopped once I quit taking Tysabri (I had many, many other infections while it, which is why I finally quit Tysabri.). Why are UTI’s so common with some MS meds?
Diagnosed on 40th bday (2 years ago)
I started at 43 and my condition isn't very good the right side of my body is numb I don't walk talk or write well at all! I would think the severity if your disease is the crippling part....I asked my doctor how many lesions I had he told me I would say infinite but there is a end somewhere!! All and all I can walk again just gotta focus!
I was diagnosed two years ago at 46 with two lesions but without any symptoms before. My spinal tap was without OCB. In my case, I assume I have had MS since recently.
I was diagnosed with PPMS at age 55. I have spent the significant previous portion of my life going to doctors with symptoms, who never once pursued my symptoms and was made to feel like “oh here she comes again” nobody would listen to me, My family and I are certain this started in my early 20’s late teens. I finally moved away, found a new doctor and would not give permission for my records to be forwarded. It was only then that my symptoms were pursued and I was quickly diagnosed with PPMS. So many lesions on my brain, spine and neck. Positive spinal fluid. Had an EDSS of 3. So if I had been diagnosed 30 years prior I could have benefitted from treatment. Now the only treatment available to me is Ocrevus. What do you say about people like myself who know have no options left ?
Your journey sounds just like mine. Finally diagnosed at age 62 after years of strange symptoms that no doctor put together! Been on Ocrevus now about 6 years but although no new lesions my symptoms and disability have caught up on me and I am immobile with symptoms that just remain. Always wonder if Ihad been diagnosed years ago and put on DMT how much better I’d be now. Hope you are doing well😊
Sharing
Good morning Dr. Boster. I have a question please. At what age do you feel progressing slows down? As we get older, I've heard it can slow completely down. Does that mean it may not get much worse after a certain age? This is something I've been really wondering about. I will be 56 this year. Onset symptoms at 45 diagnosed at age 52. Thanks so much!
Hello Dr. Boster,
you've mentioned ethnicityl as a possible risk factor for MS. Do you mean within the three major groups, african, asian and caucasian, or among those other groups. As wikipedia shows, there are dozens or even hundreds of sub-groups.
Actually it doesn't make any difference for me, since I got MS for nearly 13 years. But just for a mearly academic interest, is there a scientific connection for any genetical similiar group of people to develop this disease?
PöSö: I really like your intro. I'm always waiting for a rapper to kick in ;)
I was diagnosed at 24 with relapsing worsening MS. They don't use that classification anymore. That was 24 years ago. I've had significant disability from the onset and I have so much more life to live. I worry about how worse it's going to get.
My official diagnosis was in 2016 having to much things going on in life I barely had time to go see a doctor....many many times I thought I was just dealing with a short term of sickness or something like that but as soon as I got officially declared Ms person a lot of things click together a lot thinking about stuff I went through in the past....soon as a medical practitioner saw me and my symtomps he knew right away...I was dealing with Ms but before making it official he send me to do a few more tests to get it official and bum yeah it did so...I do think working nightime did speed up the process for my Ms to reveal... working nights sleeping mornings and just enjoying a bit of my life before running back to work....yeah definitely that made things much faster to happen....not enough time exposed to the sun no vitamin D but in the end how I'm I suppose to know well no I know...
MS at 15, diagnosed at 40, never medicines. I started with very bad symtoms, one big attack around 30, no symtoms or relapses for 25 years. Instead of getting worse I am getting better compared to first onset. I think I asked a million times are you neurologists sure I have MS? Always a firm yes🙄 not that I am complaining but the science says, MS is a progressive disease. So I am confused to say the least.
I got diagnosed at 39
With ppms now my dr says hes not sure ...I should get another opinion
I want another med that's not so immune suppressing can u help with your opinion. ..
I want another med that's not so immune suppressing can u help with your opinion. ..
Right now I'm on ocrevus
If somebody had symptoms at 15 and an MRI with lesions but was told that teenagers didn’t get MS and then was officially diagnosed 15 years...would that have actually qualified as pediatric onset MS?
For the past 4 years I have been loosing my mobility this year I have had 2 drop falls
With no cause I didnt trip just down with a bang this latest one it took me 30min
Before I could stand after that I started looking into possible causes and from this I I found a connection to late onset multiple secrelosis of which I appear to have every symtom listed
and has progressed over the past years getting a doctor to listen or do anything due to reduced medical help since covid
What I am asking is it possible to get LOMS over the age of 70 I was 75 when first
Started that was the heavy leg feeling and walking slowed down
I guess yes but there are I also think there other factors that determine MS progression
Scary 😳
DX at 25 but I had symptoms since 19 or 20
I need your help. Please. Do you also see weird zebras like me? I have so many issues. I have mri of entire back. I think lesions could be there. Not dx with ms. Asked for mri of brain. I have ms hug???
I am 60. hEDS plus comorbidities x10.
Delaware county, Ohio
I had optic i r i t is at 27 and did not develop Ms until the age of 60 for diagnosis in between I lead an active life going to the gym I did have instances where I had trouble collapsing into the garden etcetera I have taken f a m p r y a or f a m p r i d i n e twice a day for the last 11 years now in a wheelchair but I am mentally good
What about the lights? You can explain me? Please, I, m scarried, so scarried, I have MS, creepy, my imagination have just started a death, I, m insane in a brain, maybe 😂
I die? LOL I hope that disease is for a long time,, I saw many patients with progressive multiple sclerosis, is one bad prognostic? I have 50 years old,, I, m worse, I, m caucazian, Romanian deutsch no smoking, no drink
Howdy, you're dynamic you scarried me, what I saw?
Smoking is bad. Stress is bad. Quitting smoking is very stressful. ...
Sooooo.... ?????
And all this is dependent upon when we were exposed to the EB virus, so age is not as relevant.
Watching this in 2023...a guy cannot change and not be a guy.....tell that to some of the delusional trans people out there 🫠
I was thinking the same thing here in 2024.