My Dr officially diagnosed me as PPMS a year ago. My spine is riddled with lesions, I have 2 on my brain and my spinal cord is shrinking. Im partially paralyzed from the waist down. Now I’m noticing my arms and hands are getting weaker. I was diagnosed 9 years ago, 3 months after my second son was born. I said that day that I’d be in a wheelchair by the age of 40. I turned 39 last week and I am waiting for my wheelchair to be made. And next month I’ll be the lucky recipient of a urostomy. I have been fighting so hard that my Dr is surprised I did as well as I did looking at ,y MRIs. I appreciate what you are doing for the MS community.
Thank you for watching and for sharing. You sound like a warrior Kapluchi. You weren't dealt a nice hand of cards but you I bet your son will grow up having seen his mom FIGHT hard. #WeHaveMS
after watching this video and reating the comment above I seem to be fortunate that my ppms hasen't processed as fast as others with those diagnosis. back in 2008 I had a bout of optic neuritis in my right eye and up to about the spring 2017 I seem to have been ok. but then started to have more signs of that I might be progressing. at this point I was able to function still quit normal. but in in early 2019 I stared to have more signs that started with lighted headless that impacted me only when I would walk. I would say the progression from that point excellerated and started effecting my mobility. I was diagnosed with ppms in oct 2020 and started ocruvis treatment right away. I'm still progressing but at a much slower rate. I'm still walking with limitations fortunately still working, taking care of my 5 year old.....getting on treatment right away shows it has helped with slowing down the progression.
I live in Columbus, but go to the MS Oak Clinic in Akron. A few months ago, my doctor didn't have any openings so I saw the nurse practitioner for the first time. The first thing she said was " why do you drive up here when you have Dr Boster in your backyard?!" Then, last month your videos showed up in my recommended feed. 👍😎
The Oak Clinic is wonderful and I'm glad you're getting great care! If you ever wanted to see us at OhioHealth, we'd love to help take care of you. 614-533-5500 to schedule a visit.
You my friend are the best. I was diagnosed with MS Late last year at 54 years of age and listing to your video's I've learned so much more than what my Primary MS Doctor discusses with me. In no way am I saying he's not a good or great doctor but you seem to understand and listen to your patients more intently. I believe now that I have PPMS. I've only had one treatment of the Ocrevus medication and soon to take a second round but sometimes I feel like crap. Thank you Doctor for explaining things with much more clarity. I wish you were in NJ.
Here's a question. My Uveitis has been out of control lately. Usually I can get some drops for a week and it's under control but lately I've had this for over 2 weeks. The drops has made it much better but not totally gone. I haven't been wearing my contacts because of this. My question is do you see this a a sign of PPMS? Is this something I might be getting regularly because of the MS? Or can the heat be a triggering factor causing my MS to act up? Oh yeah by the way I had Uveitis before I was diagnosed with MS and later did research and found out that MS can cause this. Thanks
@@otheomuse I seldom hear of any fellow MS patients discussing uveitis ... patients and even neurologists almost always talk about optic neuritis when they speak of eye problems, so I have struggled to find solid information directly linking uveitis to MS. The reason that I am so interested in this topic is because I, too, have had bouts of "out of control" uveitis. When it is discussed, the subtype of uveitis that is usually associated (somewhat) with MS is Intermediate Uveitis. However, my cases of uveitis have always been labeled as "iritis" or "anterior uveitis", which affects the inside of the the front of the eye, a different location within the eye from that of Intermediate Uveitis. My eye symptoms are typically somewhat different from Intermediate Uveitis, as well: I usually present with an eye that is completely red where all the white used to be, with severe pain on eye movement, and extreme sensitivity to light. My understanding is that Intermediate Uveitis presents more frequently as blurred vision and floaters in the field of vision, without as much of the redness and pain as iritis (but I might be completely wrong about that statement!) Anyway, my doctors have been very puzzled about my continued bouts with uveitis and just keep testing over and over again for things like Rheumatoid Arthritis, Lupus, and other such autoimmune disorders that are more readily associated with anterior uveitis. Sorry for writing a novel here (I wanted to give you some of my background!), but here's the reason for all the above: I'm wondering if you know what kind of uveitis that you have?
Thanks for video, my consultant has given up on me since i progressed to SPMS. Was supposed to see him last month now i only see junior doctorrs who takes jotes and has to ask consultant at later date. So questions with few answers
Thank you my partner have her which type Monday, like that it's the RR one, which they will treat in UK. This one they don't. This has put her mind at rest etc. thank you again Matt
Thank you Doctor B... I just seen my Nero..he spent two hours with me! we went over all my test and talked a bit, he asked me questions I got wrong. His diagnosis was PPMS with Dementia. I knew I had issues with my mind, I just thought someone took it..but I guess it is still in there some where.. hahahah.. God Bess you for doing these vid's!
Thank you for your videos. They are the best information I have been able to find. I have been unwell since my late Forties (57 now) still no diagnosis. Just had my first MRI and it was clear..waiting to hopefully get in to a neurologist soon. I haven't been able to work because of the fatigue..I hate being in limbo..sorry for rambling. Thank you so much for providing straight forward helpful information!
Thank you. My sixty year old brother has just been given this diagnosis. He has not cared to put much time into investigating his deterioration in health, until his wife decided she'd had enough of his strange behaviour and chucked him out and he came to live with me. I insisted he see a neurologist. His brain is severely affected (they call it extensive white matter disease in his frontal lobes, and holes in his corpus callosum), he's struggling to stay upright and he's been told he should no longer work. He's pretty chilled about it, but it's really difficult for me to get my head around his behaviour, and how to look after him.
Dr Boster, Thank you. I value your time and thought given to making this piece, A video which provides new learning to me I appreciate the added insight. The very best to you, Alex
Your videos are so appreciated! Thank you for this explanation. I left a previous comment on another video talking about the use of lumbar punctures using CSF to determine unpaired O-Bands. Still anxiously awaiting this video. There seems to be a huge divide in whether or not it is necessary, or even helpful. I had a lumbar puncture and am glad I did. When going through the diagnosis process, and working through the lengthy differentials I too as a patient wanted to be absolutely sure it was MS. I had 16 O-Bands, and have yet to get a straight answer as to whether a high count means anything. Would just love to hear all your insight on the use of LPs, and what the CSF can tell us. Thanks again for taking the time to make these videos! You are reaching so many of us impacted by MS, with great information!
I hate to say this but you have been more helpful to me than my mellen center Dr. in Cleveland. I have PPMS and have multiple disabilities in a short amount of time. I currently take Ocrevus this is my 4th kind of medication. I’m very skeptical of this one as well. I’m not feeling any better at all.
Yo! WUT? Thank you for watching my video and thank you for the comment! Im very hopeful you'll start to appreciate benefits from Ocrevus. In the ORATORIO trial, the changes at 2 years vs placebo were 24%, so this 1 year into therapy it may be still hard to discern a difference. Please keep fighting!! #WeHaveMS
Dear Dr. B....Thank you SO very much for another informative video. I always learn a great deal from you! I was diagnosed with secondary progressive m.s. just over a year ago. Apparently I went undiagnosed for the last 20 plus years! All the symptoms I had were put down to other illness I have....like arthritis, fibromyalgia, diabetes, depression etc., Please would you be kind enough to explain SPMS? Until now, I haven't been able to find much info on this. Thank you SO much in advance! Please keep up the very good work that you do.....You are very much appreciated! Best wishes & good health to you & your family....Ann 👍🏽
Thank you dr. Boster for sharing and explaining so much info I hope to have an informed discussion with my neurologist tomorrow if I can remember all of this 😂
I am a 53 year old man diagnosed with MSRR 3 years ago. my disability continues to progress slowly since then without attacks and following its diagnostic methodology when listen to me and the evidence from studies that I have, I believe that I do not get any improvement in my diseace since Aubagio 14 mg is not for MSPP. What are the most effective medications for MSPP? Obviusly all this will be consulted with my neurologist. Could you guide me to make the best decision? If this generates fees I would understand just let me know how the procedure will be. Thank you Doctor and do not know how much you help with your videos to MS patients around the world. Greetings from Mexico.
Starting at 55 via MRI (any many physical issues) I was advised I have Relapse Remitting with a heavy burden of spots. Fast forward 18 months.. .. .. Dr's have upped the ante and changed the prognosis to PPMS. 2 of the 3 (no spinal tap performed) Sh*T is going Sidways fast but It all still seems very subjective. I appreciate all that Dr B says, does and shares. ~ Thx Doc.
After round 2 we generally don't treat again, unless there is a new clinical attack or 2 new MRI lesions. At 7 years, 50% of folks never got retreated and 30% got a 3rd course. Excited stuff!
I have been having eye pain when looking up, muscle spasms, fatigue, loss of balance and falling. My neurologist did an autoimmune workup and tested negative for all so he says I don't have ms. But I thought blood work wasn't the way to diagnose it?
Doc I love the way you think and the way you express it. Now how can we get your way of thinking North of the border. Or do I just have to put up or get out
Thank you, this is good to know, my doctor keeps looking for spinal lesions, I have been progressing without attack for awhile now. I have over 20 lesions in the brain, the left frontal lobe, the periventricular areas and the pons
Hi there 🤗 On my Brain MRI it only show 2 single small lesions: 1 Brainstem (Pons) And 2: very small lesion in my C5 (Cervical Spine) But my reflex are OK Just some bilateral leg buckling sometimes, stiffness and some mild tremors with fatigue.. Neurologist isn't worried at all.. It might just be that the lesions appear too small or is just the MRI machine lighting or refraction?? Help- anybody.. please!r
How is PPMS different from SPMS? Is it possible that in some patients, PPMS is just SPMS that missed the RRMS diagnosis period? It would explain the later age group
Can PPMS go 10 or 12 yrs with no real progression of symptoms, except maybe fatigue? Did the docs know about these Oligoclonal bands in 2002? Back then I was told my spinal fluid did not have the MS marker most people with MS have. I wonder if he was talking about Oligoclonal bands.
Wow, sounds familiar. I remember asking my team leader once, "So, this is not PPMS?" She said, so sure, but that's how I feel I've gone, very quickly, since the very serious "attack" that stopped me in my tracks. Never to return to it and fast-tracked to the totally and permanently disabled Fed payday. I am not asking you for medical advice, simply education. Because knowing is half the battle. I believe, she agrees, and now that I have a title for this movie I've felt I've been living in with these weird symptoms, the serious pain I assumed was a previous car accident, that I've walked off because I needed to work. I went to the doctor if I was dead with said for at least a decade, and prior to the serious pain, other ones. But yeah, very sudden, very fast and completely I lost. I'm alive, I'm positive, I simply mean that I lost so much and apparently the evidence was there to get approved so quickly. I have lesions on my brain and spine with most every symptom as MS is defined by Mayo Clinic. But instead of being so long winded, just one final question. Is there more than I'm missing about the ability to be so sure of the two? My first line was Rituxan due to JCV+, then gave in after a total of 5 1000 mg infusions in 3 therapy doses, then coaxed to O despite having no issue and had success with the chimeric. Anyway, I just want to understand and no one has done such a great job that I've seen, from a media standpoint, outside of you. Okay, enough flapping the flanges. Only so many spoons with cogniznce and I need to give someone else a turn. :)
I had my first visit with a neurologist and they want to do a nerve study. They ordered an MRI but only after I asked and just the cervical and thoracic spine but not the brain. Also no contrast. Wouldn't.I need the brain MRI also?
i have ms sin 2013 and have pain in my back but nobody understands how bad is the pain n my neurology doctor said have nothing to do with ms sometimes I feel like my doctors don't understand how bad is the pain.
Hi Aaron, First I like to say thanks for videos, they are very informative. Does the power of MRIs matter? I have had two MRIs one for brain and 1 for cervical and they are both clean but my symptoms continue to worsen.Visual disturbances (Floaters, light sensitivity, color no as bright, weakness in left leg and right arm (fine motor affected hard to use things involving dexterity), major fatigue, poor balance. It's so bad I sleep for more than 16 hours a day and the doctors say I'm fine but it's getting worse. I tried pushing for another MRI but I was refused since the MRIs were done not to long ago. I think they are 1.5T machines. Brain was with contrast and cervical was without. I also seen an ophthalmologist for eyes who told me to go see a neurologist and saw an endocrinologist who tested me for thyroid and other diseases. All came back normal except for little higher than normal prolactin, ferritin and low vitamin D (23ng/ml). So I'm at a loss here. Thanks for your help.
Hey Hassl3, thanks for watching and thank you for sharing. It sounds really frustrating! A 3T magnet has been shown to see more than 1.5T however, a properly protocoled 1.5T image can be superb, it just depends on how the scanner and imaging protocols are set up. I'm sorry your struggling and wish you the best of luck.
Thanks Aaron, so how hearing this from you is more comforting than hearing it from the neuro's who just want you out of their office asap. Let me ask, what's your take on vitamin D supplements?
I've been in the process of being diagnosed, but it's been an ordeal because of insurance changes and such. I was diagnosed 9 months ago now, but I haven't been on any medication because of the insurance issues. I'm fearful it's ppms because i haven't felt a break since the first episode. Is it possible it's just because I'm without treatment?
This describes my husband's progression. He was diagnosed in 1994 and started with 20+ enhanced T2 lesions. However, he was only identified with PPMS a handful of months ago. Granted, he was 25 at the age of diagnosis, but he's never flared or remitted and he's at EDSS 8.5. What's the benefit in not actually labeling disease progression accurately?
Left a comment on a previous video. I was diagnosed with PPMS but I don't see any lesions on my spinal cord and I haven't been sent for a spinal tap. Very nervous about that. I have been getting progressively worse over the past 3-4 years with severe weakness in my left leg mostly the hip. I have had a few falls and my leg drags so I can no longer run. Should I get a second opinion?
2nd opinions are always a welcome idea IMO. Worst case scenario you lose a day of your life and have testing to be told you're on the right track. That's not so bad. Best case scenario, you leave with some fresh ideas on how to approach the disease.
In the early 80s, I fell at work. Continually over a 3-4 year span, I pretty rapidly got weaker and weaker, the pain increased. Eventually slowing to a gradual progression. My experience during the early years was very traumatic with monthly EMGs and MRIs and lots of other stuff in between. Never giving me time to recoup before the next EMG/MRI. The doctors were baffled...they kept calling it, "Progressive Neuro-muscular Transmission Demyelination", they said that was NOT the real diagnosis and that basically, my diagnosis was a long list of progressive symptoms complicated by demyelination, if it was MS I would not have PAIN, and also gave me reasons why it was not a lot of other diseases. When did they finally acknowledge that pain CAN be a symptom?
Scary historical facts: first MRI machine used in early 80s. 1st MS DMT came to market 1993. The therapeutic field of MS is young. I was taught in med school (late 90s) that MS didn't cause pain....Our understanding of this disease has grown in leaps and bounds since then.
That explains a lot regarding my tests, treatment, and therapy! Thank God for progress in this field. Question: How did you feel when they did confirm that pain was involved? Did it make sense to you or did you want to hold on to what you were previously taught?
What I found insidious was many of the diagnostic tests performed made my existing complaints at the time, worse. Such as shocking my nerves test,spinal tap and weirdly physical therapy. Each caused more pain that took months to subside. MS is just a pain.🤔
It seems doctors and the medical system are working quite slowly to diagnosis my MS symptoms. I know there are many other diseases but after one surgery, a misdiagnosis of Archnoirditis, and one dr.thought it was all in my head. I'm exhausted.
Steve Parsons Don't give up! It is so difficult to advocate for ourselves and I tell you that having been a low income advocate who fought to have folks get the benefits and access to programming that they deserved. I was excellent in my position. I share that only to emphasize my point as I am failing miserably advocating for myself. Be strong and be forceful in asking for answers. I hope that every day brings you closer to some answers!
I just got the diagnosis RRMS. After several doctors telling me that my symptoms were indicative of MS and they would test. The first neurologist just handed me off to his partner who always hemmed and hawed over a diagnosis and prescribing medications for dmt only giving me prescriptions for my symptoms. I chose to go to another neurologist and was told that I had an atypical MRI he did another MRI and also a spinal MRI. During his follow up he informed me that it was definitely MS. And he informed me of the risks of tysabri and said he would like To start me after more testing
Hi Dr. Boster! What if the symptoms a patient has can be attributed to other existing problems and one of the two imaging criteria are met. Then would it be wise to have a spinal tap? Even if the result wouldn’t change a decision to treat? Hypothetically speaking of course:)
Aaron Boster MD yes I know. Spinal tap doesn’t sound like anything I want. I saw your treatment philosophies video. Even if I trust my Neuro maybe it’s good to have a second opinion. Will annual MRIs always be the case? You said you had 6 RIS cases.. can u say how many converted?
I have MS and am interested in taking treatment using Lemtrada... In your opinion would that approach be helpful or harmful or just simply ineffective to use in the first place for anyone with PPMS??
It's an unanswered question at this point. In fact there is a clinical trial exploring Lemtrada use in PPMS that should be starting in the next year. I would encourage anyone with PPMS to look at anti-CD20 drugs like Ocrelizumab or Rituximab. Just my 2 cents.
Aaron Boster MD Hi doctor I was diagnosed with ms 3 years ago and I was only under corticosteroids twice I now have a problem with left hip that got worse during this 3 years , the bone does move And 3 months ago I had same problem with right hip I kinda lost my voice too My doc says it's ms and it's because I didn't treat my first relapse at time but I noticed that treatments don't work for me I'm afraid that I might have PPMS specially because my left leg got more heavier and very weak during this 3 years Please tell me what can I do to stop using canes and to get back my voice and my congivitive skills I'm only on my 20s
I was three of three for my diagnosis. A gradual increase in disability over the past several years, lesions in my brain and on my spinal cord, and positive for bands in my spinal fluid.
I hate the word "insidious". I have PPMS. Everything is difficult to explain, even to my wife. It's tough to find the words, like if I talked to my former self, he wouldn't understand anything.
Hi, great knowledgeable videos. I live in the UK (Wales), diagnosed with PPMS 7 years ago. I am on no medication as my consultant wont prescribe anything to me as he says that there are no medications to help with PPMS. Ive also seen your video on Therapeutic Inertia and it has given me the confidence to demand some sort of treatment (next time i have an appointment with him), that can at least help with balance issues, muscle spasms and spasticity. What are your views on the benefits of Sativex as a treatment? Thank you
Great video, thanks. Sativex is only the CBD oil element of cannabis in an oral spray form, so there is no THC element in it that would cause any type of psychosis like straight up cannabis would. As its in spray form, one can take as many sprays as required to find a balance between spasticity control and not making the legs weaker. Ive spoken to people who use it and they have learnt that 4 sprays throughout a day is good for them, anymore like 6 or 8 makes their legs very weak and they are unable to stand up. Its all about finding the correct balance for each individuals needs i guess.
Mileena, In the modern era MS is not a deadly. Played right we can expect a normal life expectancy and hopefully normal life quality. I invite you to review my videos here on this channel and ask any questions that come to mind.
My Dr officially diagnosed me as PPMS a year ago. My spine is riddled with lesions, I have 2 on my brain and my spinal cord is shrinking. Im partially paralyzed from the waist down. Now I’m noticing my arms and hands are getting weaker. I was diagnosed 9 years ago, 3 months after my second son was born. I said that day that I’d be in a wheelchair by the age of 40. I turned 39 last week and I am waiting for my wheelchair to be made. And next month I’ll be the lucky recipient of a urostomy. I have been fighting so hard that my Dr is surprised I did as well as I did looking at ,y MRIs. I appreciate what you are doing for the MS community.
Thank you for watching and for sharing. You sound like a warrior Kapluchi. You weren't dealt a nice hand of cards but you I bet your son will grow up having seen his mom FIGHT hard. #WeHaveMS
after watching this video and reating the comment above I seem to be fortunate that my ppms hasen't processed as fast as others with those diagnosis. back in 2008 I had a bout of optic neuritis in my right eye and up to about the spring 2017 I seem to have been ok. but then started to have more signs of that I might be progressing. at this point I was able to function still quit normal. but in in early 2019 I stared to have more signs that started with lighted headless that impacted me only when I would walk. I would say the progression from that point excellerated and started effecting my mobility. I was diagnosed with ppms in oct 2020 and started ocruvis treatment right away. I'm still progressing but at a much slower rate. I'm still walking with limitations fortunately still working, taking care of my 5 year old.....getting on treatment right away shows it has helped with slowing down the progression.
I live in Columbus, but go to the MS Oak Clinic in Akron. A few months ago, my doctor didn't have any openings so I saw the nurse practitioner for the first time. The first thing she said was " why do you drive up here when you have Dr Boster in your backyard?!" Then, last month your videos showed up in my recommended feed. 👍😎
The Oak Clinic is wonderful and I'm glad you're getting great care! If you ever wanted to see us at OhioHealth, we'd love to help take care of you. 614-533-5500 to schedule a visit.
Do you do video call meetings with international patients?
You my friend are the best. I was diagnosed with MS Late last year at 54 years of age and listing to your video's I've learned so much more than what my Primary MS Doctor discusses with me. In no way am I saying he's not a good or great doctor but you seem to understand and listen to your patients more intently. I believe now that I have PPMS. I've only had one treatment of the Ocrevus medication and soon to take a second round but sometimes I feel like crap. Thank you Doctor for explaining things with much more clarity. I wish you were in NJ.
Here's a question. My Uveitis has been out of control lately. Usually I can get some drops for a week and it's under control but lately I've had this for over 2 weeks. The drops has made it much better but not totally gone. I haven't been wearing my contacts because of this. My question is do you see this a a sign of PPMS? Is this something I might be getting regularly because of the MS? Or can the heat be a triggering factor causing my MS to act up? Oh yeah by the way I had Uveitis before I was diagnosed with MS and later did research and found out that MS can cause this. Thanks
@@otheomuse I seldom hear of any fellow MS patients discussing uveitis ... patients and even neurologists almost always talk about optic neuritis when they speak of eye problems, so I have struggled to find solid information directly linking uveitis to MS. The reason that I am so interested in this topic is because I, too, have had bouts of "out of control" uveitis. When it is discussed, the subtype of uveitis that is usually associated (somewhat) with MS is Intermediate Uveitis. However, my cases of uveitis have always been labeled as "iritis" or "anterior uveitis", which affects the inside of the the front of the eye, a different location within the eye from that of Intermediate Uveitis. My eye symptoms are typically somewhat different from Intermediate Uveitis, as well: I usually present with an eye that is completely red where all the white used to be, with severe pain on eye movement, and extreme sensitivity to light. My understanding is that Intermediate Uveitis presents more frequently as blurred vision and floaters in the field of vision, without as much of the redness and pain as iritis (but I might be completely wrong about that statement!) Anyway, my doctors have been very puzzled about my continued bouts with uveitis and just keep testing over and over again for things like Rheumatoid Arthritis, Lupus, and other such autoimmune disorders that are more readily associated with anterior uveitis.
Sorry for writing a novel here (I wanted to give you some of my background!), but here's the reason for all the above: I'm wondering if you know what kind of uveitis that you have?
Thanks for video, my consultant has given up on me since i progressed to SPMS. Was supposed to see him last month now i only see junior doctorrs who takes jotes and has to ask consultant at later date. So questions with few answers
Thanks for the video and education.
Are you able to do more videos on PPMS?
Treatment options, symptoms thank you
Have you seen these 9 videos on progressive disease: ua-cam.com/video/xROT3Uk7Z3U/v-deo.html
Thank you for your clear, no nonsense style of providing information. Much appreciated.
Thanks Dr Boster, I love learning from your videos.
I'm so glad Ann! Thank you!
Thank you my partner have her which type Monday, like that it's the RR one, which they will treat in UK. This one they don't. This has put her mind at rest etc. thank you again Matt
Thank you Doctor B... I just seen my Nero..he spent two hours with me! we went over all my test and talked a bit, he asked me questions I got wrong. His diagnosis was PPMS with Dementia. I knew I had issues with my mind, I just thought someone took it..but I guess it is still in there some where.. hahahah.. God Bess you for doing these vid's!
Right on Jeanine
Thank you for your videos. They are the best information I have been able to find. I have been unwell since my late Forties (57 now) still no diagnosis. Just had my first MRI and it was clear..waiting to hopefully get in to a neurologist soon.
I haven't been able to work because of the fatigue..I hate being in limbo..sorry for rambling. Thank you so much for providing straight forward helpful information!
Hang in there Carol!
Thank you. My sixty year old brother has just been given this diagnosis. He has not cared to put much time into investigating his deterioration in health, until his wife decided she'd had enough of his strange behaviour and chucked him out and he came to live with me. I insisted he see a neurologist. His brain is severely affected (they call it extensive white matter disease in his frontal lobes, and holes in his corpus callosum), he's struggling to stay upright and he's been told he should no longer work. He's pretty chilled about it, but it's really difficult for me to get my head around his behaviour, and how to look after him.
Dr Boster,
Thank you.
I value your time and thought given to making this piece,
A video which provides new learning to me
I appreciate the added insight.
The very best to you, Alex
Hey Mr Knowles! Thank you for giving me the idea to make this video!! I'm delighted you found it helpful!
Your videos are so appreciated! Thank you for this explanation. I left a previous comment on another video talking about the use of lumbar punctures using CSF to determine unpaired O-Bands. Still anxiously awaiting this video. There seems to be a huge divide in whether or not it is necessary, or even helpful. I had a lumbar puncture and am glad I did. When going through the diagnosis process, and working through the lengthy differentials I too as a patient wanted to be absolutely sure it was MS. I had 16 O-Bands, and have yet to get a straight answer as to whether a high count means anything. Would just love to hear all your insight on the use of LPs, and what the CSF can tell us. Thanks again for taking the time to make these videos! You are reaching so many of us impacted by MS, with great information!
Howdy Cassie! This is a super topic and I need to move it up on my list of videos to make. Thank you for reminding me!
Thank you Dr Aaron, keep it up 👍
If you keep watchin' 'em then I'll keep makin' 'em!
I hate to say this but you have been more helpful to me than my mellen center Dr. in Cleveland. I have PPMS and have multiple disabilities in a short amount of time. I currently take Ocrevus this is my 4th kind of medication. I’m very skeptical of this one as well. I’m not feeling any better at all.
Yo! WUT? Thank you for watching my video and thank you for the comment! Im very hopeful you'll start to appreciate benefits from Ocrevus. In the ORATORIO trial, the changes at 2 years vs placebo were 24%, so this 1 year into therapy it may be still hard to discern a difference. Please keep fighting!! #WeHaveMS
Dear Dr. B....Thank you SO very much for another informative video. I always learn a great deal from you! I was diagnosed with secondary progressive m.s. just over a year ago. Apparently I went undiagnosed for the last 20 plus years! All the symptoms I had were put down to other illness I have....like arthritis, fibromyalgia, diabetes, depression etc., Please would you be kind enough to explain SPMS? Until now, I haven't been able to find much info on this. Thank you SO much in advance! Please keep up the very good work that you do.....You are very much appreciated! Best wishes & good health to you & your family....Ann 👍🏽
Thank you dr. Boster for sharing and explaining so much info I hope to have an informed discussion with my neurologist tomorrow if I can remember all of this 😂
I am a 53 year old man diagnosed with MSRR 3 years ago. my disability continues to progress slowly since then without attacks and following its diagnostic methodology when listen to me and the evidence from studies that I have, I believe that I do not get any improvement in my diseace since Aubagio 14 mg is not for MSPP. What are the most effective medications for MSPP? Obviusly all this will be consulted with my neurologist. Could you guide me to make the best decision? If this generates fees I would understand just let me know how the procedure will be. Thank you Doctor and do not know how much you help with your videos to MS patients around the world. Greetings from Mexico.
Starting at 55 via MRI (any many physical issues) I was advised I have Relapse Remitting with a heavy burden of spots.
Fast forward 18 months.. .. .. Dr's have upped the ante and changed the prognosis to PPMS. 2 of the 3 (no spinal tap performed)
Sh*T is going Sidways fast but It all still seems very subjective.
I appreciate all that Dr B says, does and shares. ~ Thx Doc.
Can I still walk with ppms I stòp.walking on m Dec 21
Very informative. Is CIS considered an attack? If the CIS happens during the year of Neuro decline does that mean PPMS is not diagnosed? Thank-you.
Good morning Dr B! Ty as always for the knowledge. Next month is last my last round of Lemtrada. So pumped up for it. Have a great day and week.
MZ
MATT Z what happens when you are done with this round Matt? I'm on aubagio.
Hell yeah!
After round 2 we generally don't treat again, unless there is a new clinical attack or 2 new MRI lesions. At 7 years, 50% of folks never got retreated and 30% got a 3rd course. Excited stuff!
CricutN Like Dr B just stated below. For me Lemtrada has and is changing my life for the better.
Aaron Boster MD Ty Dr B completely awesome
I have been having eye pain when looking up, muscle spasms, fatigue, loss of balance and falling. My neurologist did an autoimmune workup and tested negative for all so he says I don't have ms. But I thought blood work wasn't the way to diagnose it?
Doc I love the way you think and the way you express it. Now how can we get your way of thinking North of the border. Or do I just have to put up or get out
Love this video! Thanks, Dr. Boster
Your welcome Sharon! Glad you liked it!
Thank you, this is good to know, my doctor keeps looking for spinal lesions, I have been progressing without attack for awhile now. I have over 20 lesions in the brain, the left frontal lobe, the periventricular areas and the pons
I'm 53, was diagnosed at 48, but testing started at age 40
TY for sharing with us Andrea. #WeHaveMS
Same here . Took over 10 years to get diagnosis. Was told I needed to chill out and if I wanted a prescription for Valium!!
Lost just a little bit of that early time for aggressive treatment!!!
Hi there 🤗
On my Brain MRI it only show 2 single small lesions:
1 Brainstem (Pons)
And 2: very small lesion in my C5 (Cervical Spine)
But my reflex are OK
Just some bilateral leg buckling sometimes, stiffness and some mild tremors with fatigue..
Neurologist isn't worried at all..
It might just be that the lesions appear too small or is just the MRI machine lighting or refraction??
Help- anybody.. please!r
How is PPMS different from SPMS? Is it possible that in some patients, PPMS is just SPMS that missed the RRMS diagnosis period? It would explain the later age group
Can PPMS go 10 or 12 yrs with no real progression of symptoms, except maybe fatigue?
Did the docs know about these Oligoclonal bands in 2002? Back then I was told my spinal fluid did not have the MS marker most people with MS have. I wonder if he was talking about Oligoclonal bands.
Is it possible to have one episode that doesn't progress and stays stable?
Wow, sounds familiar. I remember asking my team leader once, "So, this is not PPMS?" She said, so sure, but that's how I feel I've gone, very quickly, since the very serious "attack" that stopped me in my tracks. Never to return to it and fast-tracked to the totally and permanently disabled Fed payday. I am not asking you for medical advice, simply education. Because knowing is half the battle. I believe, she agrees, and now that I have a title for this movie I've felt I've been living in with these weird symptoms, the serious pain I assumed was a previous car accident, that I've walked off because I needed to work. I went to the doctor if I was dead with said for at least a decade, and prior to the serious pain, other ones. But yeah, very sudden, very fast and completely I lost. I'm alive, I'm positive, I simply mean that I lost so much and apparently the evidence was there to get approved so quickly. I have lesions on my brain and spine with most every symptom as MS is defined by Mayo Clinic. But instead of being so long winded, just one final question. Is there more than I'm missing about the ability to be so sure of the two? My first line was Rituxan due to JCV+, then gave in after a total of 5 1000 mg infusions in 3 therapy doses, then coaxed to O despite having no issue and had success with the chimeric. Anyway, I just want to understand and no one has done such a great job that I've seen, from a media standpoint, outside of you. Okay, enough flapping the flanges. Only so many spoons with cogniznce and I need to give someone else a turn. :)
Glad this helped Murray!
What is the difference between SecondaryProgressiveMS to Primary?
Hey Doc, do you have a short video on how to dx SPMS?
here is my playlist on progressive MS. There are several videos that discuss SPMS and dz. ua-cam.com/video/xROT3Uk7Z3U/v-deo.html
I had my first visit with a neurologist and they want to do a nerve study. They ordered an MRI but only after I asked and just the cervical and thoracic spine but not the brain. Also no contrast. Wouldn't.I need the brain MRI also?
i have ms sin 2013 and have pain in my back but nobody understands how bad is the pain n my neurology doctor said have nothing to do with ms sometimes I feel like my doctors don't understand how bad is the pain.
What conditions mimic specifically ppms ?
Can you explain what it means by completely independent of attacks
Hi Aaron,
First I like to say thanks for videos, they are very informative.
Does the power of MRIs matter? I have had two MRIs one for brain and 1 for cervical and they are both clean but my symptoms continue to worsen.Visual disturbances (Floaters, light sensitivity, color no as bright, weakness in left leg and right arm (fine motor affected hard to use things involving dexterity), major fatigue, poor balance. It's so bad I sleep for more than 16 hours a day and the doctors say I'm fine but it's getting worse. I tried pushing for another MRI but I was refused since the MRIs were done not to long ago. I think they are 1.5T machines. Brain was with contrast and cervical was without. I also seen an ophthalmologist for eyes who told me to go see a neurologist and saw an endocrinologist who tested me for thyroid and other diseases. All came back normal except for little higher than normal prolactin, ferritin and low vitamin D (23ng/ml). So I'm at a loss here. Thanks for your help.
Hey Hassl3, thanks for watching and thank you for sharing. It sounds really frustrating! A 3T magnet has been shown to see more than 1.5T however, a properly protocoled 1.5T image can be superb, it just depends on how the scanner and imaging protocols are set up. I'm sorry your struggling and wish you the best of luck.
Thanks Aaron, so how hearing this from you is more comforting than hearing it from the neuro's who just want you out of their office asap. Let me ask, what's your take on vitamin D supplements?
Hassl3 - here is a video I did on vitamin D a few months back: ua-cam.com/video/zv-WjPEloT8/v-deo.html
Please let me know what you think.
Could you explain what unpaired oligloclonals bands means? Thanks in advance
+NuevovidaconEM I answer that in this vid: ua-cam.com/video/wel_iyxLWF8/v-deo.html
what are ''unpaired'' oligoclonal bands? if my spinal tap reveals 5 oligoclonal band, does that fit tha criteria?
I've been in the process of being diagnosed, but it's been an ordeal because of insurance changes and such. I was diagnosed 9 months ago now, but I haven't been on any medication because of the insurance issues. I'm fearful it's ppms because i haven't felt a break since the first episode. Is it possible it's just because I'm without treatment?
Hang in there!
What are unpaired oligoclonal bands Dr. Boster?
Here you go: ua-cam.com/video/RdpnfAWdGn4/v-deo.html
WHAT is paired Oligoclonal bands? I am trying to interpreted the report. I'd like to share them with you!
Howdy Rita. I hope that this video helps: ua-cam.com/video/RdpnfAWdGn4/v-deo.html
This describes my husband's progression. He was diagnosed in 1994 and started with 20+ enhanced T2 lesions. However, he was only identified with PPMS a handful of months ago. Granted, he was 25 at the age of diagnosis, but he's never flared or remitted and he's at EDSS 8.5. What's the benefit in not actually labeling disease progression accurately?
Left a comment on a previous video. I was diagnosed with PPMS but I don't see any lesions on my spinal cord and I haven't been sent for a spinal tap. Very nervous about that. I have been getting progressively worse over the past 3-4 years with severe weakness in my left leg mostly the hip. I have had a few falls and my leg drags so I can no longer run. Should I get a second opinion?
2nd opinions are always a welcome idea IMO. Worst case scenario you lose a day of your life and have testing to be told you're on the right track. That's not so bad. Best case scenario, you leave with some fresh ideas on how to approach the disease.
In the early 80s, I fell at work. Continually over a 3-4 year span, I pretty rapidly got weaker and weaker, the pain increased. Eventually slowing to a gradual progression. My experience during the early years was very traumatic with monthly EMGs and MRIs and lots of other stuff in between. Never giving me time to recoup before the next EMG/MRI. The doctors were baffled...they kept calling it, "Progressive Neuro-muscular Transmission Demyelination", they said that was NOT the real diagnosis and that basically, my diagnosis was a long list of progressive symptoms complicated by demyelination, if it was MS I would not have PAIN, and also gave me reasons why it was not a lot of other diseases. When did they finally acknowledge that pain CAN be a symptom?
Scary historical facts: first MRI machine used in early 80s. 1st MS DMT came to market 1993. The therapeutic field of MS is young. I was taught in med school (late 90s) that MS didn't cause pain....Our understanding of this disease has grown in leaps and bounds since then.
That explains a lot regarding my tests, treatment, and therapy! Thank God for progress in this field. Question: How did you feel when they did confirm that pain was involved? Did it make sense to you or did you want to hold on to what you were previously taught?
I was just glad it got clarified Janeel!
DITTO!
What I found insidious was many of the diagnostic tests performed made my existing complaints at the time, worse.
Such as shocking my nerves test,spinal tap and weirdly physical therapy. Each caused more pain that took months to subside.
MS is just a pain.🤔
What are the confusions that lead MS to be missed diagnosed. Like lime disease etc.
Many conditions have overlap in clinical presentations and imaging findings that can make a diagnosis more challenging.
Why are doctors afraid or hesitant to take the route to diagnosis MS?
Not sure what you mean exactly Steve. Please explain a bit more?
It seems doctors and the medical system are working quite slowly to diagnosis my MS symptoms.
I know there are many other diseases but after one surgery, a misdiagnosis of Archnoirditis, and one dr.thought it was all in my head. I'm exhausted.
Steve Parsons Don't give up! It is so difficult to advocate for ourselves and I tell you that having been a low income advocate who fought to have folks get the benefits and access to programming that they deserved. I was excellent in my position. I share that only to emphasize my point as I am failing miserably advocating for myself. Be strong and be forceful in asking for answers. I hope that every day brings you closer to some answers!
I just got the diagnosis RRMS. After several doctors telling me that my symptoms were indicative of MS and they would test. The first neurologist just handed me off to his partner who always hemmed and hawed over a diagnosis and prescribing medications for dmt only giving me prescriptions for my symptoms. I chose to go to another neurologist and was told that I had an atypical MRI he did another MRI and also a spinal MRI. During his follow up he informed me that it was definitely MS. And he informed me of the risks of tysabri and said he would like To start me after more testing
Hi Dr. Boster! What if the symptoms a patient has can be attributed to other existing problems and one of the two imaging criteria are met. Then would it be wise to have a spinal tap? Even if the result wouldn’t change a decision to treat? Hypothetically speaking of course:)
Sometimes we have to repeat imaging every 6-12 months to screen for changes consistent with MS. Sometimes CSF is obtained to collect more information.
Aaron Boster MD yes I know. Spinal tap doesn’t sound like anything I want. I saw your treatment philosophies video. Even if I trust my Neuro maybe it’s good to have a second opinion. Will annual MRIs always be the case? You said you had 6 RIS cases.. can u say how many converted?
second opinions are always reasonable, IMHO. Annual MRI scans are the way to go. Not many have converted, thank goodness!
Aaron Boster MD Yes Yes! Good to hear and good for them😉. Had to look up IMHO! Lol. Showing my age I suppose! Thank you!
ha! #WeHaveMS
I have MS and am interested in taking treatment using Lemtrada... In your opinion would that approach be helpful or harmful or just simply ineffective to use in the first place for anyone with PPMS??
It's an unanswered question at this point. In fact there is a clinical trial exploring Lemtrada use in PPMS that should be starting in the next year. I would encourage anyone with PPMS to look at anti-CD20 drugs like Ocrelizumab or Rituximab. Just my 2 cents.
Aaron Boster MD
Hi doctor
I was diagnosed with ms 3 years ago and I was only under corticosteroids twice
I now have a problem with left hip that got worse during this 3 years , the bone does move
And 3 months ago I had same problem with right hip
I kinda lost my voice too
My doc says it's ms and it's because I didn't treat my first relapse at time but I noticed that treatments don't work for me
I'm afraid that I might have PPMS specially because my left leg got more heavier and very weak during this 3 years
Please tell me what can I do to stop using canes and to get back my voice and my congivitive skills
I'm only on my 20s
Is it rrms that got worst because it didn't get treated or PPMS or prms since I got better with some previous relapses
Thank u in advance
I was three of three for my diagnosis. A gradual increase in disability over the past several years, lesions in my brain and on my spinal cord, and positive for bands in my spinal fluid.
Are you rrms or ppms?
I have a small lesion in the genu of the corpus callosum is this like a major indicator that it might be ms
Hard to say without actually seeing the scans, sorry Stephie.
It's ok thank you.
Thanks for understanding!
I hate the word "insidious". I have PPMS. Everything is difficult to explain, even to my wife. It's tough to find the words, like if I talked to my former self, he wouldn't understand anything.
Is it possible to progress, without new lesions?
Howdy Andrea. Here's a video that answers your question: ua-cam.com/video/fZPQ48N-nIs/v-deo.html
#WeHaveMS
Hi, great knowledgeable videos. I live in the UK (Wales), diagnosed with PPMS 7 years ago. I am on no medication as my consultant wont prescribe anything to me as he says that there are no medications to help with PPMS. Ive also seen your video on Therapeutic Inertia and it has given me the confidence to demand some sort of treatment (next time i have an appointment with him), that can at least help with balance issues, muscle spasms and spasticity. What are your views on the benefits of Sativex as a treatment? Thank you
I love your self advocacy Dave, Fight man, it's YOUR body and YOUR brain. Here are my views on cannabis in MS: ua-cam.com/video/YhWIuDvuzRQ/v-deo.html
Great video, thanks. Sativex is only the CBD oil element of cannabis in an oral spray form, so there is no THC element in it that would cause any type of psychosis like straight up cannabis would. As its in spray form, one can take as many sprays as required to find a balance between spasticity control and not making the legs weaker. Ive spoken to people who use it and they have learnt that 4 sprays throughout a day is good for them, anymore like 6 or 8 makes their legs very weak and they are unable to stand up. Its all about finding the correct balance for each individuals needs i guess.
👍👍
Hallo... Darf ich fragen, wie die Diagnose gestellt wurde. Ich meine MRT oder Nervenwasser?
Just got diagnosed with MS last month and I been stressed. Is this a deadly disease? I've been seeing lots of horrible things on good.
Mileena, In the modern era MS is not a deadly. Played right we can expect a normal life expectancy and hopefully normal life quality. I invite you to review my videos here on this channel and ask any questions that come to mind.