Primary Progressive Multiple Sclerosis (PPMS)

[@lindamadarik7923]

Dr B..the "break it down "neuro. This is one of your gifts, you are able to help share your knowledge by breaking down info and setting attainable goals that REALLY HELP. Because of you, I have increased my water intake, exercise, and I have a sleep routine. Not to mention the fact that I know so much more about MS...knowledge is power. I too will one day be coming to Ohio to shake your hand and give you a cup of coffee. Thank you ..keep breaking it down Dr. B

[@AaronBosterMD]

Howdy Linda! Thanks for the kind words!

[@meloneyparker]

Whomever gave this a thumbs down is a giant goober. This is your best video yet. So informative. No one else gives this information and in such a understandable way. Your channel keeps me sane in a time when I have lost a lot of functionality in my life. 👍👍

[@AaronBosterMD]

Thanks for the support Meloney! Haters gonna hate I guess!

[@pamadasilva1393]

I scrolled down to add my comment doctor... but then giftbouting has already expressed it . Yes, tears in my eyes...no doctor have ever educated us as you do....this video is so extensive...you have spent much time and energy to educate the helpless MS patients ...but i feel i am improving by listening to your videos and abiding by them. That helpless feeling i used to have is now diminishing, i feel. May God Bless you and keep you healthy and happy.

[@AaronBosterMD]

TY for such kind words Pamada!

[@giftboutiq]

I’m a big mush...I get tears in my eyes every time I learn something new from you. One I have to drive out to Ohio just to shake your hand.

[@AaronBosterMD]

deal!

[@l.a.w.79]

TRUE!! I’ve become an informed MSer because of this channel. Thanks Doc!!

[@willowtree9082]

Giftboutiq, I understand your comment it is very emotional to be validated isn't it.

[@willowtree9082]

Giftboutiq, I do wonder also,if that's just not part of MS as well, I've learnt resently that MS warrior are prone to depression and tears as well as other emotions come hand in hand with it all in MS, I find I personally get very weepy and get a frustrated anger coming out, I'm still undiagnosed MS, so this could just be me.

[@Calamitygirlchannel]

Dr. Boster, I appreciate you and your videos so much! I wish you were closer to Jackson Hole, WY🧡

[@jiji-bl1pm]

안녕하세요 박사님 ppms 겪고 있는 동양인입니다 ppms 대해 생소했지만 많은 자료와 도움주셔서 감사합니다

[@maryc5678]

Great, informative video. I hope you know how appreciated you are!

[@pameladubin1138]

I was diagnosed at 18yrs old fall of 2000, fresh off of high school! I have had definite exacerbation times usually three or four a year, I’m considered RRMS even after “growing up” with MS and thankfully I’m completely mobile, your videos are extremely educational and explain this horrible MSter for newly diagnosed or people looking for info. Thank you thank you thank you!!!

[@Matthewgreen7779311]

Thank you for this great information. I’m now one of your subscribers. I’ve learned a lot but will need to watch this a few more times to truly better understand it. I have PPMS. I’m doing only 1 of the 4 things you mentioned, and that is Ocrevus. My doctor prescribes Vitamin D but I haven’t been taking it but I will do so. I also don’t exercise but I’m going to start. I’ve never smoked.

[@CL_Easterling]

Thank u, doc., I've learned more about this disease in a week from your videos than I have from outside doctors since my diagnosis in 2009.

[@stephaniemorton5039]

Thank you for this video it is very informative. I have not yet been diagnosed with MS as I await an MRI this week but I am trying to learn more about it and your videos help tremendously.

[@AaronBosterMD]

👊

[@socallynn6735]

THANK YOU Sharon for the awesome questions and THANK YOU Dr. B. for the easy to understand answers! You guys have answered questions I’ve had and questions I’ve not even thought to ask. This PPMS patient will surely be referencing this particular video numerous times I’m certain! (For me) The best and most informative and comprehensive video to date.

[@AaronBosterMD]

yay!

[@keithriemersma9793]

Excellent analysis and explanation, thanks very much for your insight and wonderful work Keith in Michigan

[@AaronBosterMD]

YW Keith!

[@elizabethhayes1101]

I think I’ve finally grasped the concept of progression! Thanks Dr Boster, as always!

[@AaronBosterMD]

[@shelveyphillipsbowman8037]

That was the most well explained of MS I have heard

[@pinkpixie73]

Excellent questions and answers to a complicated disease. Thank you for taking the time to educate us further on ms. I feel like I am the only one with relapsing progressive ms. I have just had a steady progression in decline for a few years as well as flares/attacks more recently. Just when my Neuro has it pinned down to what is going on with me, I flip the script,lol. Not willingly though. I am 46, dx at 45, I go for my first full dose of Ocrevus in July. I am not hoping for a miracle, but would be wonderful to have less fatigue and be able to ambulate better. I as well as all of your viewers appreciate the videos so much as our own drs may not have the time to educate us. We then know going to our appt what to ask or bring up. It helps make the appt a little less scary, for me anyway. Thanks again Dr. B! -Carla from SC

[@AaronBosterMD]

Howdy Carla! TY for sharing!

[@giftboutiq]

Last med I used was Tecfidera (number five so far) and had severe anaphylactic symptoms after one day. I do need to try another one for sure. BTW...Happy Memorial Day! I salute you as an honored MS warrior!

[@AaronBosterMD]

Happy Memorial day to you and yours!

[@roberture5903]

Happy Memorial Day weekend Dr Boster. Have a great day tommorow with your family. Thankyou for everything you do.

[@AaronBosterMD]

High Five!

[@janicem4382]

So I was diagnosed with PPMS today. Not a lot of options available. I was sent home to eat well, get lots of exercise and see him again in six months. I am 63 years old.

[@pattischmitz2680]

What symptoms are you having? If you don’t mind me asking..thanks!

[@MainlyMJ]

Lots of exercise?? I can hardly move... how then?

[@lw5682]

Excellent excellent excellent video! Thank you!!! 🐶🐔🐍....pics of all the animals I remember you saying were in your house, although I couldn’t find a ferret pic!

[@AaronBosterMD]

you got them all!!

[@dougtagg9162]

I take Sunday off from my weekly exercise routine to have coffee and today watch your video on ppms. It’s my personal quest since I was diagnosed at 59y.o. Thank you for this video, Doug coffee in hand from Lyndhurst, Ohio

[@AaronBosterMD]

#MSWarrior

[@amberrodriguez-lopez208]

I started smoking when I was 11 years old... I am now 38.. I stoped smoking cold turkey 7 months ago and I have noticed a change for the better! Not sure what type of ms I have.

[@topherv4229]

Dr Boster - I was diagnosed with PPMS in 2016. At the same time, I was told I have Hepatitis Antibodies in my blood. I did in fact have Hep B in the 1990's and the tests showed it cleared my body. I am told Ocrevus or any other drug that suppresses my immune system is dangerous as my Hepatitis could come back. I would be interested to know if this is true and just what can be done and/or what research is being done (again if any)? I'm really enjoying your videos...thank you!

[@sheridanrose9880]

I’m 64 and I was diagnosed 2011. I learned about MS when my friend was diagnosed in 1995 and I would think hmm I do that sometimes. As I researched I m realizing and believe I’ve had MS since my late 20s early 30s. Foot catching, missteps, walking into things, fatigue, cogfog, imbalance, feet numbness still and since 30s. Multiple work injuries that never quite seem to heal completely. Nothing happened regularly to even consider a problem so I didn’t bring it up. Except I’d complain about numbness and dr would poke with a pin, I’d react so no problem. 🤷🏻‍♂️A steady slow progression I think. 🤷🏻‍♂️

[@cynthiacamilarsen4859]

Hey divine here. ! A must read!wow I feel so similar .. thats crazy. I'd like to share my ms fails. And see if this sounds at all close to any of ur work accidents? And I'm sorry but I can't help but laugh when I write about my self when I think how many times I just completely failed at life. I wanted to say I was about 14. And it's time to met. The worst Ms patient ever. I promise u will laugh in 5,seconds. Lol. And boy talking about falling.. clubsy.. and just plan utter disaster that was this kid! It'd divine! Lol aka hi I'm Cynthia I even fell into the water while casting my fishing rod,I tried again and just cast the rod and threw the whole rod In. Woops? Are they, not one time use fishing poles? My bad, I missed that memo... Then I rolled down the hill while my dad attempted to teach me to ride a bike. We still joke about it ... Humm skateboards and trees..I really shined in that one... lots of trees oh my!!!I got a sprained ankle out of that one. Geeze the list is endless... oh and me and cartwheels forget it... for on that day, a nice broken collar bone was the reward not the landing. That day. Followed up by a broken nose two days later .... Grow me up. I'd slide under freezers in the high scale kitchens. As I worked the front of the line, I'd open resturants. And chrisen them with gallons of BBQ. Sauce...I really got into trouble that time! Man.. grocery stores and gallons of milk and eggs on the floor... woops ? Me. Aand electric slicers. Ouch.. I got a vacation weekend for that one! And at some point my loving father... Pulled me a side.. Boy did I think I was in for it. For I was daddy girl. I was probably even younger then. But he said with the most steern , but loving eyes. " You have for to stop hurting your self, or there going to start thinking I'm beating you! " Lol. I had the biggest sigh oh relief at that moment for.im like oh your joking lol. Real funny daddy. Lol. You got me hahaha! For My dad was and is still the best dad ever. As it's always the highlight of my day Everytime I hear his big new Yorker voice. It's still just as intreguing now as it was then. I was hoping to she'd a bit of laughter to my complete utter failures on ms. And. Never did we think anything was wrong back then . That's whats crazy. Symptoms would b all over the place u think there's none. And when it starts at young u think u got a super clumbsay kid. As we did. I also was sick alot.but I have an autoimmune disease also. I hope this helped a little I wanted to share it becauae ur story resinated true to me in my own life. Sincerely Divine.✍️🙏🐤💨 Thanku Hope ur havein a easy day today. Filled with family. And support💕

[@AaronBosterMD]

#MSWarrior

[@cynthiacamilarsen4859]

@@AaronBosterMD 🤓🐻 True dat, boster, Dr. And I think it comes with time! ⏳ My fav. Warrior💛 💪statements... №1 #what did u do now,lol¿ .......=Warrior.. 🥇 №2 #what happen dear? ..... =Warrior.🥇 No3.# awe did u break ur leg? = ... = Warrior🥇 I think the world is safer with me and my spify purple electric wheelchair. 💯🌠🌠🌠 DIVINE ✍️🐤💨 LoL 🙃

[@cynthiacamilarsen4859]

Finally it arrived! 25.17. Mins... Yay! & thx u very much Dr. Arron boster! ~A Glorious, Eye Opening Depiction... Of ppms and progression too. But somehow u did it in a heartlifting educational way,i can honestly say i have never turned a way disheartened, or more distrot before i clicked a video here,im always uplifted, for u have shed a light apon it... ~ Its why i appeicate ur videos so much,in this channel, for when it feels as though we are in the dark or have reached a speedbump in our own care. We stilll have this m.s. village. And i very much appricate that. I especially loved where u flashed ur video feed when you were speaking about a certian topic in leaky pool.as i always wanted the long medical version of leaky pool, i just never asked. N Maybe u didnt do it on purpose. But i found it helpful. For this m.s. patient with way too many leasions and no DMT on bored. (Trust me i tried, i now give ☝) My failures in this disease are now why i try to help everyone else so much and well that's also just my kind givin nature my parents instilled apon me maybe... Again thanks so much.. ~furthermore in closing, I appriciate all the time u spent to craft this for her. For im sure she is beyond greatful, i hope it resinated apon her as it did to me. And i hope she's stable on this day. For isent it true "Its only in darkness, where we can truely see the light. " Paraphrase? I think of that statement, to purtain to ppms. And all of ms. Before this village U truely do shed a light apon us, where before for alot of us we really were in the dark. Wow, What a dedication. Sincerely, Divine. :) P.s. hummmm... Next up... Ted talks.. 🐻🐾🤓🐣 Or.. Coffee with boster n white mic? 🎤🤓☕ U decide!🐻🤓🔮⌛☕🎤

[@AaronBosterMD]

Howdy Divine! I'm so glad you found this one helpful!! TY for all the feedback, I really appreciate it!

[@cynthiacamilarsen4859]

@@AaronBosterMD As i too appriciate it. Thx u. Divine.

[@sharonzernia6100]

This is Sharon Zernia. I’m doing the best I have since last the last 6-7 years. I went to Europe for 3 weeks oct 2019. Did a lot of walking, and used my trekking poles. Had a hip replacement oct 2020. Still doing pt, first it was for the hip, now for continuing to strengthen my left sided weakness which is also my surgical hip. I swim about 25 days a month. ( I miss because of timing of the pool being open or I’m out of town). I stay as active as I can. If there is something that I can’t do physically, well then, I work on it until I can! When I went to Hawaii in October 2017, I was wearing a KAFO, took my walking sticks and walker, and rented a scooter while there. I did have an MRI at my request a couple of months ago even though I told my ms specialist in 2018 that with only treatment for ppms is Ocrevus and that nothing would change in my DMT, I was curious if there were new lesions. Ms has found the wrong body park itself in!!!

[@jlcmarietta]

Doctor B, have you made a video for spouses/significant others on how best to support their partner with MS? Seriously, my hubby is clueless and I really need help.

[@AaronBosterMD]

Jennifer Cruickshank excellent

[@hannahhuemoeller4984]

Have you heard of the research with regards to the Lionsmane mushroom and it’s possible neuro regenerative properties with regards to MS and dementia? What are your thoughts about these kind of holistic type medicines as well as a Whal’s Protocol or an AIP diet? So many people say it decreases symptoms (myself Included. Changing my diet has had life changing effects since I’ve never been dx with any disease yet). Does it only affect symptoms and not the disease? How can you tell? Why has there not been further research into these holistic medicines?

[@TheHatsuma]

This was a excellent video Dr. Boster. Very, very informative and terrifying. Hopefully in tandem with medicine, the great changes in my diet and implementation of exercise will greatly diminish the chance of me transitioning into PPMS. My hope too is that medicine continues to improve, doctors' become more informed, and additional methods are developed to continue in combating this disease and render it to be a lame duck. My hope and prayers go out for everyone afflicted with PPMS and MS in general to have a long and fruitful life. Thank you Dr. Boster for your thoughtful content, it really has been inspiring to watch, and I am looking forward to more!

[@AaronBosterMD]

Right on TheHatsuma!

[@gotwake7]

Another great video. Now time for coffee and time to ponder this massive amount of information then............more coffee. Happy Memorial Day Dr. B. #FUMS

[@AaronBosterMD]

Coffee = wonderful!

[@jen1399]

As always, you answer and explain so fully and with clarity Dr B. I've been struggling with my MS recently and shutting myself off a wee bit, as having additional autoimmune diseases isn't making it easy to manage my MS right now but for some unknown reason, I decided to watch today's video and it has cheered me up exponentially! You give me hope that one day MS really will be a "boring" disease. 😊 I really do love your videos so much. Thank you. Sending hugs from Scotland xx Ps. I'm 4 by 4 in my fight!! 😉 #WeHaveMS #MSVillage #MSFamily

[@AaronBosterMD]

#4for4 right on Jen!! #WeHaveMS

[@cynthiacamilarsen4859]

Jen, Divine here, For im sorry your struggling right know, i hope for brighter days a head for you. I also find it endearing, uplifting,and insperational that you choose to be 4 for 4. And sounds to me you are killing it on the aspect of trying to be the model patient. To be honest You are what we all strive to be. I understand the struggle althought i will never belittle another disease course or experence for i believe its something so personal, and cant happen twice. To two different people in a carbon copy kinda way. i have multiple auto immune diseases also n m.s. But i promise n swear it ill never pretend to understand the struggle of another. Or dull it in any way,orbelittle it. But i think its so important to share within this village n lift up one another. So, what ever you do Do it on purpose, And when u feel bad and u feel as though u have lost ur way, as much as u want to turn off the world plz dont do it for too long, for i can share my experence Im a pallitive care patient and its just not healthly, No matter howbad i feel i try to at least force my self to my wheel chair N check the mail Or go outside or open the door or window Even if its only for a little while. I know for me 3 days alone is too long. I hope u find this helped some kinda way. Sincerely, Divine🖌👣🐥 #wehavems #wehavebosterR #wehavevillages #wehaveDIVINE N #wehave444jen💯🌠🐥

[@angelabutynski8543]

I vote for boring disease!!!! Thanks for all you do Dr Boster!!

[@kathrynmcvean2514]

Thank you! Great information explained perfectly. Have a nice Memorial Day.

[@AaronBosterMD]

YW!!

[@jeffandbethyork4007]

I do my 4 for 4 regularly. Exercise is key for me, especially yoga. Floor yoga, no standing poses. 20 minutes most mornings makes walking easier and combats spasticity. I do cardio mostly in a chair. I pretend I'm speed walking with arm movement and with my legs when possible. This helps boost morale too. Ocrevus improves my walking ability too. I would love to hear how others with PPMS exercise!

[@socallynn6735]

Elizabeth York Hi Elizabeth! I exercise daily, for a minimum of 30 minutes. Usually I either use a stationary pedaler (like used in PT) from a seated position or by taking my dog on long brisk walks, cane assisted. When I first started, I could only pedal for about 5 minutes at a time and walk about 5-10 minutes. Now, about a year later, it’s nothing for me to pedal for 40-45 minutes or walk 1.5-2 miles (with a built in rest break at a neighborhood park), cane assisted! I credit my friend’s husband (my friend has RRMS) with pushing me forward. One day he said to me “Ms. Lynn, get off of that scooter! Use it or lose it!” I think he was trying to encourage his wife, as well as me. It worked! We have BOTH embarked on a massive attitude and physical fitness improvement journey! Both of us enjoying tremendous benefits!

[@AaronBosterMD]

Right on Elizabeth!

[@AaronBosterMD]

#MSWarrior

[@jeffandbethyork4007]

@@socallynn6735 Thanks for sharing what works for you!

[@jmar1973]

Another awesome video,Dr.B!👍🏾 My neuro tells me that I'm lucky to have caught my MS early(After a bout with TM),and that I'm doing the right things in regards to doing physical therapy, and getting the ball rolling towards using a DMT. So in that regard I guess I'm 3 for 4,with the DMT being the one yet to be utilized. Although I don't smoke and never have,my great challenge is alcohol, especially now,since this diagnosis makes me depressed at times. So I guess you'll have to tack a "5" on for me. Lol. Thanks again for being a source of support and information. Your videos have helped me through this most difficult time!

[@jenniferpacker1900]

I have a meningeoma brain tumor,and ppms. I found out on my 40th birthday this year. Nature has been more then over generous to me this year.

[@AaronBosterMD]

Sounds like nature has been a bit too generous to you indeed. Let's hope this year is a wonderful one for you, with less "generosity!"

[@rickyoceans2943]

Omg! What an incredible channel! I have ppms, dx late 2017. Ms is pretty awful. So people with ppms like me, we shouldn't really expect any new lesions hence showing no progression? Thing is, we are progressing no matter what the mri shows! 2018 i walked pretty normally, by 2021 i am noticeably disabled pretty much. I have a hurrycane, very important as i progress despite NO NEW LESIONS?? right? What's up with that? Mr dr says i can be progressing despite no new mri activity... that tests can be done? Like what dr lol? He never bothered explaining and i didn't demand it. I tried to get glasses finally after knowing something was wrong. Was sent to mri by eye dr, she called me personally to say she thought i may have ms but she'll let neurologist tell me! They didn't do any other tests, just the mri and trying to get glasses. Dx'd in about 3 days after mri. Anywho im guessing my case is pretty awful? But i only have like 7 very noticable lesions in my spine. I have all the ms issues. Once on caltrain going from San Jose to Palo Alto i dropped my load, very awful, just awful. That was before dx, I'm always prepared just in case. Anywho i guess i really just needed to vent. Great to find this channel! Hope it's active, just found it. Thanks again

[@azscyt988]

I was dx PPMS in 2011. Great job as always!

[@nooralfajr1775]

Then what . Any hope after his video?

[@katekatharinaferguson4912]

These videos are enormously helpful. We are so lucky to have people like Dr Boster who devote their time to communicating the facts about MS with compassion as well as optimism. Thank you, thank you, thank you!

[@betsyturek4404]

Thank you for this video. My husband has PPMS.

[@nancyrashidi]

Thank you so much for this & all your helpful videos. I have PPMS. A friend whose husband has PPMS wanted to know if you've done any videos on high disabled PPMS. Thank you for your help.

[@roxiz40]

Hello. I am answering your question on 4 for 4. I'm currently working on maintaining the vitamin D. I try to consume foods with a higher level of vitamin D. I also try to absorb a little sun (super sensitive to the sun since I was a child). This disease also mimics my ehlers-danlos syndrome so I have to be diligent and pay close attention. This can be overwhelming but I'm enjoying learning all that I can from you and others that post these wonderful videos. Thank you!

[@mjpirate4089]

Dr Baxter, Just got my 11th OCREVUS Infusion since the FDA Approval in 2017. I have over 50 MRI's since 2012 a spinal tap, and I almost checked out 3 times from immune issues before I was on Ocrevus. I was on Copaxone from 2013 to 2015 until I had what my doctors believe was some kind of immune reaction and surprisingly after I got the Flu Shot in 2014. 5 days in the hospital on Steroids to bring my Immune levels back up. When I asked if the flu shot caused it? I was scoffed at and told you can't die from the flu shot. In 2015 my PCP again recommended I get the Flu shot and against my better judgement I agreed. The nurse did not even get the needle out of my arm before I got a bad reaction in the form of my skin bubbling up around the site. 5 more days in the hospital. When the team of the Neuro department at a well known hospital gathered in open discussion puzzlement over why this happened again? I chimed in with this, "Hey doctors, do you all still think I can't die from a flu shot?" yes I've lost a lot to PPMS but I have NOT lost my sense of humor and sarcastic timing. 3 months after I got out of the hospital the second time we all learned what was happening when I had a full on and almost deadly Allergic reaction to my Copaxone injection. 12 days in the hospital later I was Off Copaxone forever and no more flu shots and or Covid shots due to what I jokingly refer as "ONE MORE DRUG TOO MANY SYNDROME" lol I had to wait 2 years from that point in 2015 until 2017 for Ocrevus to be Approved by the the FDA even though it had passed ALL of it's trials until in March of 2017 I believe it was The FDA was forced to relax their regulations on new treatments ALREADY through the Trial periods. On a side note, OCREVUS was released at 45% less cost $110,000 per year than the 30 plus year old treatment COPAXONE at $180,000 + syringes and Pads. Great video ! I have all 3 at the bottom of the pool example. Lesions in my brain on my very first MS Protocol MRI in 2012 and every one since. A huge Lesion in my Brain stem A lesion in my Medula and My spinal cord looks like a bombing range for lack of better description My Spinal Tap looked very much like the one you showed. OCREVUS stopped the progression of my MS in its tracks, improved my immune system to superior levels as my B cells are apparently under control. I still have issues with infection though, funguses and crazy neuro related vascular anomalies that turn just my left leg from my hip to my toes a purple color when I sit that the University of Penn Medicine and the Vascular Dept at Einstein Hospitals are studying and or are writing papers on me. In my latest MRI it showed 2 new lesions but they are the first 2 since I started OCREVUS and My Neuro thinks it's because I have had 3 disc fusion in 2013 and now the disc At C3 that is attached to that fusion is flattening out. The fun never stops with MS!!!! We Warriors just Improvise and adapt!

[@desiredecove5815]

Thank you. Sharing 💕

[@AaronBosterMD]

[@kathyfloydflashy1]

I can’t believe I understood that!

[@AaronBosterMD]

awesome!

[@fedwards2023]

Thanks Dr Boster for a great Vid, and to Sharon for her comprehensive set of questions. To answer, the question of why do I need an MRI if my diagnosis is PPMS? I woud like to add to screen for MS mimics or other diseases. Personally, I would hate to think "oh it is just my MS", and not have my symptoms investigated, and then later learn that I had something that could have been treated, perhaps even saved my life.

[@AaronBosterMD]

excellent point Fiona!

[@cateyv1]

Dr Boster, I have become quite interested in EBV in the mechanism of MS progression and the role of B cells in viral persistence. What are your thoughts on the potential of anti-virals in MS treatment either as monotherapy or in combination with DMTs? Thank you!

[@jamesemerson4102]

Just got diagnosed 3 months ago. I am 28 and my Neurologist says I have very mild disease and will live a normal life. I am on Ocrevus. My brother also has MS and had a lesion in his brain stem. He is on Tysabri and has been completely normal since. I am terrified to hear that the disease eventually will catch up with us 10 years later. I have no lesions on my spine only 4-5 on the brain. I am a guitarist. I feel like if I won't be able to play in 10 years I may as well give up now.

[@UpstreamNL]

How are you now?

[@melanieforyou]

How are things 4 years later? My mom has Primary Progressive and advanced very quickly to immobility.

[@avjkids]

As always, thanks, Dr. Boster, for the videos. This is Steve from NY. I have had PPMS for 25 years. In my case the brain/spine MRI takes about 2 hours. Currently, I am at 6.5 EDSS and I need much help getting on and off the patient table. Although I am not claustrophobic, I have 2 huge difficulties with MRIs. First, it is almost impossible for me to go 2 hours without urinating. Once I notice the urge to go, I need to wait for a pause in the imaging, then I need the help of 1 or 2 people to get off the MRI table and into my wheelchair and over to the (hopefully unoccupied) bathroom. Secondly, my legs start to go spastic after about 10 - 15 minutes. The MRI staff usually wrap my legs in a sheet to keep them from jerking too much, but that sometimes causes the tremors to move toward my midsection. Here’s my question: would it be possible for PPMS patients to have an ‘abbreviated’ MRI, that focuses only on taking images of the areas of the brain and spine that are of most interest? Anything that could lessen the time spent on the MRI table would be great. Thanks again.

[@AaronBosterMD]

short answer is no avjkids. You'd potentially miss important information. Higher strength magnets can finish scans quicker, just to share.

[@Venger26]

Good morning, Dr Boster!

[@AaronBosterMD]

Howdy Kentae!

[@Venger26]

Aaron Boster MD ⭐️❤️👍🏾!

[@MelissaMSwarrior24]

I've been on tysabri for 10 years now. Do you have any videos that talk about this DMT? Also, you mentioned that Tysabri is used for primary progressive MS which I don't quite understand since I was told it's for RRMS and PPMS. I was in a clinical trial for Tysabri in which I allowed my neurologist to enter me in and at the time my only symptom is debilitating fatigue. I agreed to enter the clinical trial because I felt that if it helps to keep my MS from progressing then I felt that I would be helping those who get diagnosed with MS to be able to see that it does work. Also, the pamphlet that biogen sends me, describes that it's for RRMS/PMS. Can you clarify please? I appreciate you and all that you do!! I wish to meet you in person one day. My wish is to be able to have an appointment with you for a second opinion on everything. Thank you so much!

[@robertoreguenes]

Thank you and you're amazing

[@lisaloprestodehart1606]

Question! Is it true that ppms sometimes dont show alot of lesions? Or in only one location? Also new patients can you do telemed for first visit?

[@leahallab7558]

HI Dr. Boster, My neurologist is saying PPMS is a possibility for me. One problem, no lesions. He said 80% of all PPMS patients have lesions, 10% don't. How is that possible and where is my disease originating from? I don't meet the MacDonald Criteria. Thank you for help. Your videos are so informative!

[@lovingdale2449]

Thanks Dr. BOSTER!! I do have a question for you of great importance, in the case that a person has had optic neuritis multiple times with the first episode being the worst, taking 9 months to recover vision, then small bouts afterwards always recovering vision, heat makes vision hazy, few spots on MRI, none on c or t spine. Question in relation to that is with all that being said a diagnosis of RRMS was made, when it comes to a brain MRI, how many lesions and what type of lesions are used to identify or conclusively note that they are in fact MS? Aside from migraines, what other conditions can mimic the same lesions on brain MRI? I hope this isn't to person of a question. Thank you for all of your videos and showing support to us with MS!! 🧡

[@AaronBosterMD]

Here you go: kzbin.info/www/bejne/ZpTWp4mOltmffNE

[@lovingdale2449]

@@AaronBosterMD Thank you kindly!!!! 🤗

[@darlenemusick6865]

Thank you.

[@monicaemt-i7786]

But don’t you usually have the bands when you’re first diagnosed? Do they go away? Or do you do a repeat spinal tap to see if they’re still there?

[@ragub6]

Thanks a bunch Dr - Heard in an MS group webinar "Why are the drugs different for PPMS and RRMS" - Asked after a discussion on nervous degeneration. Reply was "Pathology for PPMS & RRMS is different - So are the ways to treat" - Have I heard it correctly? The "Leaky Swimming Pool" that you explained, suggests RRMS & PPMS are fundamentally the same, why are treatments different? - Due to spots in Spinal MRI? Tx again

[@AaronBosterMD]

Howdy Raguraman! Yes I'm of the opinion that it's one disease with different phenotypes.

[@pammorrissey8477]

I’m ready for MS to be boring! Working hard to reduce inflammation!!

[@theflossi56]

It’s incredibly sad to me I was misdiagnosed with fibromyalgia for a decade. It didn’t show up on mri and I suffer today when I may be in better shape had I known and was treated

[@AaronBosterMD]

#MSWarrior

[@pattirandall6977]

Another great video!

[@AaronBosterMD]

TY!

[@anonymousgirl799]

Thanks for your through analysis, Dr. Boster. I was diagnosed Primary Progressive this year, and awaiting my third Ocrevus infusion. My Neuro said I need to "wait a year to determine if drug is effective". Is Lemtrada an option for treating PPMS? As this is the second aggressive treatment I am pondering. Thanks!!

[@AaronBosterMD]

Unfortuatnely, there's no real clinical trial data to help us answer this question Anonymous Girl.

[@anonymousgirl799]

@@AaronBosterMD I was wondering what options I have other than Ocrevus, as I have no interest in drugs with less efficacy. Will discuss with Neuro...Thanks!

[@recoveryrocks1]

I just quit Ocrevus. Bad decline. 👎

[@joannacafaro8129]

You mentioned the term transverse myelitis. Are all MS spinal lesions considered transverse or partial transverse myelitis???

[@roberture5903]

I have to be honest with you doctor,at this time I am 3 for 4 in my battle. I quit smoking regular cigarettes 6 years ago but I still vape e cigs

[@Damian6Robin]

On your opinion does ocrevus works good for people with SPMS ? See til this day I have seen a decline on my walking my health with ocrevus.... haven't really noticed something I can say it's been beneficial other than no shots every other day unlike Rebif rebifose but I mean moving either has to be with my walker or on a wheelchair and no matter what else I try nothing else works other than ibuprofen, ampyra and baclofen....I really don't think personally that ocrevus works well on people with SPMS like myself what do you think doctor ?

[@AaronBosterMD]

Great thing to discuss with your provider for sure!

[@trivialinsignific]

thanks for the video Sir ! i am wondering how the proteins in the spinal fluid could be different than that of the blood, is that a matter of circulation or is there a mechanism that alters the blood ? i know you probably explained it already, but if you get a chance ... thankyou -

[@laurad3497]

Im 34 with ppms (started just before i was 31). No relapses and no response to solumedrol or copaxone. I have my 3rd ocrevus infusion this week. So far it hasnt slowed the progression. Is there hope it may start to help? (some back history: I was born with vitiligo, patches of no pigment. And developed hashimotos around age 16) What is your thoughts on my crazy active and confused immune system and is there anything I can do for my daughters to prevent history repeating itself with them? My oldest is nine and she shows different signs of her immune system being overactive.

[@kapluchi194]

So i was dxed at 30 with RRMS. I will be 40 in 3 weeks and was dxed with PPMS 2 years ago. That being said, i went to my Dr this week and when i asked him about MRIs he said he doesn’t see the point because we are doing and using everything available and the MRI will only show more progression and further spinal atrophy. So essentially he seems to have an opposite view as you do about MRIs. What is your opinion on this?

[@l.a.w.79]

This is consistent with the question I asked about progression. I was diagnosed with RRMS in March 2019 but I am 🤨 over 40 and want to know what can be expected in terms of progression probability. I’m curious how Dr Boster answers your question. My doctor wouldn’t tell me where lesions were located in my brain but when I kept asking he said the subcritical region. That can impact executive functions and makes it hard for others to really see progression except through my report!!! And I’ve noticed issues for some time.

[@AaronBosterMD]

Sounds like we disagree on this point!

[@AaronBosterMD]

thank you for sharing LA W!

[@Mutant_Potential]

I was diagnosed with Primary Progressive MS and started to get set up for Ocrevus (but life happened including a move and my mother passing)….I was also also diagnosed with Crohn’s as a teen. When things started to settle down, I went to a PCP who referred me to a GI doctor & neurologist. I am waiting on the neurologist and GI doctor, but in the meantime…my symptoms have worsened (decreased balance, spasticity, brain fog, lower back pain, sometimes tremors, etc) My question is: What should I focus on doing myself while getting set up with a GI doctor and neurologist?

[@cllnmason]

Thanks Doc! Can you clarify what you mean by attacks? Also, curious, is smoking cannabis the same as cigarettes in the advancement of disease?

[@AaronBosterMD]

Vid on Attacks: kzbin.info/www/bejne/fKDNapiDip6Cidk Vid on Cannabis: kzbin.info/www/bejne/hKbFhaiYnJ5nY6c

[@cllnmason]

@@AaronBosterMD perfect! I'll check'em out 👌 Thank you!

[@littletsmom8854]

I have PPMS and Cannabis Is the only thing that Stops the Spasms,from 2003 til i started the MJ in 2012 i was on 2 Canadian crutches, could not drive.i started smoking,And turned it over to Jesus .Within 2 months the Crutches gone,also threw 5 meds away ,Ambein,zoloft,zanaflex and neurontin,and diazapam,no longer need the rider to get through grocery,my meds are Rebif ,methotexrate 8-2.5 mg mondays 1 gram of Iv soul medrol monthly, no new lesions since 2012 and i still smoke cigs.Jesus Can Do what no Human Can

[@giftboutiq]

Good morning!!

[@AaronBosterMD]

Good morning Giftboutiq! I hope you like this one, it's a master's class in PPMS! Question for you: Do you think that it's too long?

[@giftboutiq]

Aaron Boster MD not al all....the more we learn, the better educated we are. You rock!!

[@AaronBosterMD]

Awesome sauce! That's awesome to hear! I hope others feel the same!! #WeHaveMS

[@sonsofanarchy5316]

@@AaronBosterMD l need ocrevus thank you dr aaron boster i have PPMS she was relapsing Remiting _And now PPMS after 5 years

[@mattz5275]

@@AaronBosterMD IMO no it wasn't it's a lifelong disease so a 25min video to help ppl understand completely what ppms is phenomenal. Ty

[@jlcmarietta]

Is there a way to become a moderator? I really would like to help.

[@warrenbda62]

Working on getting exercise done to have consistent 4 for 4

[@AaronBosterMD]

Awesome! #4for4

[@gabbyfranks78]

You are funny lol😂great video.

[@jodybridgewater3062]

Dr. Apparently my MRI showed legions in my cervical spine, but i don't dee them at all. Can you show is an MRI where yhe legions are not so apparent? Like does ot look like thickening of the cord? Thanks

[@2listening1]

I'm sure you've studied ibudilast kzbin.info/www/bejne/qZyZhYqlhpummq8 but I can't remember if you talked about it or not anywhere. Doctor B, we all think you do amazing work. I had the time of my life at the MS walk, too. :)< It's easy for a layman in the field like me to think something silly like, "OH, well, MS damages the brain, so I guess if one thing goes wrong, it affects everything else -- the body is all one -- and I guess it's not THAT surprising that brain shrinkage with age goes faster in MS than in non-MS adults and older adults." But WAIT, actually, it isn't obvious to me at all why that rotten deal has to happen! Nature really IS too generous. :( Why does that happen, or don't we know? Forgive me -- I'm starting to think I should watch AAALLLLL your videos before asking ANY questions! lol but, do you think ibudilast will show that it helps? I think the video is a year old now. Love to your family including the majestic Behemuth River! ;)< ^,,^

[@MainlyMJ]

I've been told I do no longer just have MS but PPMS. A question that I want to ask is, my movement is more difficult, and my back and hips cant walk after about 50 to 80m. My question is this: my brain feels like it is in a pan and being fried . The whole time. I want to shave my hair as it feels like my hair is hurting my head. A feel thick headed and Double vission is bad. I can't for instance roll my eyes, its HURTS. I am in pain. My body hurts so much and I am sooooo tired. (I was also diagnosed with MS) MRI's and CT scans is not affordable. Going to a dr over and over is a luxury I dont have. Im just tired. (This path started about in 2010) i had a very very bad car accident in 2008. My one leg was saved with a steel pen.

[@zenalee5427]

Hi I have 150 lessons between my brain and spin, I relapse every 6mths what kind of MS is that

[@RunningNotStopping]

Hey doc, why does my nerve test come back fine but i have mjor sporadic nerve pain sometimes in my shin and foot?

[@GiyHill]

It is difficult for me to exercise due to the neuropathy type pain in my feet and legs. I can not tolerate Ocrevus injections. My balance is off. I get confused in stores, I sometimes can't tell where I am. I no longer go to Neurologist. I also have Bipolar. I am 69 years old. I still play guitar fluently and sing some.

[@yunalee13]

I'm getting worse and worse. Unfortunately Ocrevus has not come to Greece. So I will go for Lemtrada. Does it help in ppms????

[@giftboutiq]

My last attack required three consecutive ER visits for IV Solumedrol. That was about month and a half ago. It seemed to work for three weeks but my vision has worsened both with reading and long distance. I did go to my eye doc and he recommended increase in strength. I’m quite scared because they are not working. My question is...should I do another round of the IV or get a daily oral prednisone?

[@AaronBosterMD]

I can't give you specific advice for your specific situation without seeing you in clinic Giftboutiq. I'd strongly encourage you to talk to your MS provider about what options make sense as next steps!

[@giftboutiq]

I realize you can’t diagnose of course....just your opinion would appreciated. I have lesions in my brain and not spinal cord.

[@giftboutiq]

Aaron Boster MD I have an appointment with him this week 😊

[@AaronBosterMD]

@@giftboutiq fantastic!

[@AaronBosterMD]

@@giftboutiq This might help: kzbin.info/www/bejne/fKDNapiDip6Cidk I discuss options for treatment

[@willowtree9082]

I really need some guidance please, I'm new to MS so I'm currently undiagnosed, I've been suffering from the symptoms of MS now for the last 2 decades,in the last 15 years my symptoms have got progressively worse with time and frequency, I'll keep it short as possible,is it normal to during flare ups of inflammation for this to last as long as six week period, getting little releif from the inflammation even though your taking meds for that,is that even normal? for the last six weeks I can literally feel the inflammation going up and down within each hour, some times the inflammation peck's and I literally can't bear weight on my spine, so pain levels are surging to with the inflammation.

[@MoistNasa]

My neurologist hasn’t told me what kind of MS I have. I was getting worst with leg strength since September 2018 until recently with Tysabri and aqua-therapy. It’s been a huge turn around! But I was getting worst and worst without attacks plus I have brainstem and spine cord lesions. But since I’m on Tysabri, is it safe to assume it’s RRMS?

[@AaronBosterMD]

that would be a reasonable assumption. Definitely ask your provider next time you see him/her!

[@meloneyparker]

I had to ask my neurologist, too. 😒

[@lisagee4330]

Do you ever have anyone with balance and dizziness. Is that change my diagnosis?

[@yunalee13]

What about ppms and lemtrada????

[@giftboutiq]

P.S..I had an MRI about a year ago and showed no changes.

[@AaronBosterMD]

that's awesome!

[@mattz5275]

AWESOME NEWS CONGRATS

[@mikaelbrodin1976]

i heave big white substanc change in the brain can the be ppms my md takiihg abut ms or willson sicknes

[@dianedunham6114]

I have never exercised consistently. I had a treadmill. Will it be enough exercise if I do it starting slowly and trying to move to 20 minutes a day?

[@K12-l3i]

Does anyone here have episodes of rambling when your ms has really ramped up? My wife has ppms. When all her symptoms are acting up at once sometimes she’ll go into speaking normal while her eyes close and roll back in her head on and off. Almost like she’s drunk about to pass out. While that’s happening she’ll talk normal and what she says makes sense but on and off constantly it turns to random rambling and random sentences about things or people. This happens over and over till she finally goes to sleep. Please help I’ve only seen her that way one other time.

[@jeaninethiede1425]

I have a question. My doctor has no idea why.. maybe you have an answer for this question. the small picture. I use a cpap machine. Almost every night I have to adjust the straps. Meaning, yesterday the straps were so tight, I could not latch the end to the magnate. Another day, it is so loose that it is blowing air out everywhere. I asked my doctor, could my brain get inflamed, he said no and went into doc lingo so all I heard was no. What about the blood vessels? I have used a cpap for years and its just be kind of recent I have noticed this.. just the last few years. I even wake up in the middle of the night and have to adjust gain. ty

[@ScareBearGirl]

Hi, what doe's it mean if you only have abnormal CSF and scans are clear or Neg. I've been dealing with a few yrs of neuro symptoms now in a wheelchair csf had two bands. MRI of cervical and brain shows no lesions. Thanks in advance.

[@jeffandbethyork4007]

Inections or bronchitis can cause pseudo- exacerbations or exacerbations in PPMS? I know exacerbations are generally not part of PPMS, but am unclear.

[@AaronBosterMD]

yes

[@arkabasu3505]

I am from India plsss tell me how long can we work with MS first diagnosis?plss it will be of help..plssssssssss

[@jay.b.akashweezy9788]

Just got a definite ppms diagnosis still smoke but am quitting asap so do u think I can still make it before its total 50% decline

[@AaronBosterMD]

research supports the claim that stopping smoking will ultimately slow your neurological progression of disability. That's a big deal for sure

[@elisabethsilver3074]

I've had 3 Ocrevus infusions over 18 months I'm 67 wasn't aware I was loosing balance until 63 !/2 from then I'm barely able to walk. So Ocralizamab didn't slow down the progression much if any. approx 38% of people receiving this treatment it works with. Being in the 60% of people no real slow done of progressive M.S. I do hope it works for most of you it isn't a cure.

[@cameronsexton6239]

Wonderful information as always. As you know, I'm 3 out of 4... I can't give up the ecig (nicotine). Thank you Doc, yours, and the entire OhioHealth team.

[@AaronBosterMD]

Howdy Cameron!

[@cameronsexton6239]

@@AaronBosterMD Hello sensei! 🧠🥋

[@soravrathi2273]

Sir i have no lesion in brain and spine mri but my walking is getting harder by harder from last 3 month is it ppms or any other disease plz tell sir

[@jackiegailfoil6761]

Hey Dr. B

[@AaronBosterMD]

Howdy

[@thechadder]

So what recommendations would you give for Late stage PPMS in Canada, never been on a treatment. Today It feels like were just caught in the fold.

[@AaronBosterMD]

anti-CD20 such as rituxan or ocrevus

[@beverly9885]

I see your videos and crave coffee. :-)

[@AaronBosterMD]

ha!