Hello Dr. Boater, I live in upstate NY and for years I suffered from symptoms that had mimic a few disorders of connective tissue disorders and autoimmune disorders. In the past 3 years my health had decline and even with weekly injections and other meds, I feel worst. My inflammation increased, my chronic fatigue and also muscle weakness and joint pain. Currently I've been treated for 3 possible disorders (dermatomyositis/Lupus, and Sjogrens) but nothing concrete even after blood works. There have been suspicion of MS but Doctors keep tossing me to other specialist and my neuro won't send me to an MRI of brain and Spine since is too busy trying to treat my chronic migraines. Please can you advice me in what can I do next Im tired if feeling sick. Thanks so much
@@lizj5063oh Liz. I’m sorry to hear this. I am an ms patient and it sounds to me, that you need a new neurologist!! If you’re experiencing migraines? An MRI should have been the FIRST thing they ordered. Mine let me down too and I fortunately found a new team of drs who actually treat each patient individually, as it should be, because we are all different. I would tell them you want an MRI of your brain and spine. I would tell them that you feel it is necessary to have a lumbar puncture done! Also, have them test you for JCV. That is just a blood test, but a very important one. Mine did not give me that test until three years into my diagnosis and now I have new underlying health conditions due to them giving me the wrong kind of medicine. If only I knew I had JCV, I may not be in the progressive phase now. I wish you the best and I hope you find the answers you need.
Fatigue, unfortunately, doesn't show on the EDSS. If fatigue increases making over the last three years, but motor function is not that affected, can that cause a diagnosis of SPMS? Actually, there not being any objective measure of fatigue, at least to my knowledge, is one of the most frustrating part of this disease. Fatigue is the leading cause why people are leaving the workplace. But insurance will challenge your fatigue because it can't objectively be measured. Is there any way to measure fatigue objectively? Any way out that situation with disability coveragee?
This was tremendous. Thank you. My husband hasn't had activity since 1997, but has had significant progression of disability. I have always been confused that he was clearly worsening, but also not responsive to meds and also not adding lesions. For the first time in 25 years, I got it. Thank you.
Thanks for another great topic. I think we all wonder what the markers and timing are in how we transition from one stage to the next. I enjoyed your analogies,personal connections and diagrams that helped us better understand this disease course. MS is like a thumbprint no two individuals are the same.
Thanks so much Dr. B. This information is so very helpful. Could you a video on the EDSS score? I find myself frustrated by it because it seems to only look at how the muscles work or not; it doesn’t seem to include fatigue, cog fog, and other debilitating symptoms. Isn’t it time to come up with a new scoring system?
I would also like to understand this better for the same reasons. My neurological exam is good but I have so many invisible symptoms that are quite disabling. Also, I have leg weakness but it only reveals itself after I walking a few blocks or overheated.
I’ve changed to secondary progressive after having rrms for about 20 yrs . I knew it was coming and it means I’m going downhill at a much faster rate now despite only having had a couple of relapses in the last couple of yrs . It’s scary as I live alone and my only contact with the human race at large is carers coming to help me . It scares me because all the things I was still able to do independently are getting fewer and fewer with every month that passes . I’m 50 and wish I wasn’t here any more as the future can only be worse than now , which is more than I can cope with on a good day , which I don’t seem to get very often these days .
I understand exactly how you feel. Have you been treated for depression? Have you tried an online support group? I am in the same situation. I just want you to know that I hear you and I am so sorry for what we go through. Assisted living where we can receive care and social activities is prohibitively expensive.
I really understand how u feel. I can't take too much more of the ðownward spiral either. I was just driving a week and a half ago. Now I have problems walking down the stairs. I am 59 and am starting to be ok with not being here.
Hi Doc B. I was trying to view the scale at the end of this video. It was blurred but I would really like to check it out. Could you supply us with a link in your second video please and thank you!
The pool analogy was so useful to help understand progression! I've always struggled to understand why if I'm feeling good now with some lesions I should feel worse in the future with no new lesion, but now I see it clearly why! Thank you so much for making this video.
Stephen Krieger MD at Mount Saini. He created it. I love this model for helping folks understand activity, progression, functional reserve, and more. TY Dr. Krieger
I am glad you added the menigeal FO B cells that opened a door to my understanding better how progression might be distinguishable from Relapsing actually a different disease process...maybe.... Does that low grade inflation cause damage to the tissue like lesions are, we just cant see it on imaging yet? or is it just like when you have a cold it just makes it harder to do what you normally can do and until you get rid of the inflammation you feel like crud by analogy?
Thank you dr. aaron. bless your heart. I have RRMS. I have fatigue, weakness, imbalance and all of that but the major pain comes from anxiety. I used to have anxiety disorders such as GAD and Pure Ocd and depression and lexapro cured them all, but after i was diagnosed with RRMS, there have been a wave of a new, burning like anxiety that is partially treatment resistant. I was put on tecfidera 2.5 years ago and will switch soon to ocrevus and I'm very excited about it, but in through trial and error, i found a pretty fantastic combo that go along with the tecfidera that improved every MS symptom to a good degree. about 25% improvement overall Fatigue, imbalance, weakness, fuzzy hed and anxiety are all reduced by a 25% percent. What a relief. I was in so much mental pain and fatigue and now my head is above the water and body feel more fluid... I'm not a doctor, i don't advice anyone to take anything without professional opinion. The combo is 1- Metformin XR 2- Coq10 3- ursolic acid (mainly from thyme, i don't take a supplement) 4- Extra virgin olive oil (2 Tbs) 5- Fish oil 1200 mg (2 gels) 6-flaxseed oil 1000 mg (2 gels) the three biggest players i noticed are the metformin, CoQ10 and ursolic acid. If i miss any of them for more than 24 hrs, I feel very bad.
Follow up question-Is it possible for a layman to present an idea for study to, forgive my ignorant titles here, MS research scientists? Would love to know if there’s a way an inquiring mind can present some of the questions on it for posterity, not profit.
Disability Progression Sir, Suddenly one day you have a fall & break your leg and walker/stick fro that day, When I asked Neuro, why amnotable to walk Ortho said fracture healed, was told "Make stick part of your life, no further falls" - I was not thrilled, thinking back I can relate to Leaking Pool - Thanks Dr
I am always scared because my worst attack i had so far prior to treatment was my eyes got blurry and weren’t coordinated so I got double vision plus my peripheral vision was moving like a vertigo, after 3 weeks it went back to normal. I’m worried that it will come back in that graph you mention that with age old symptoms will come back, is this correct?
Thank you. This was a Greta video. I think I understand the medical difference of relapsing and secondary. My MRIs have always been stable, but the symptoms keep coming. I take various meds for symptomswith my dmd. How is progression measured, if taking meds (since the meds are actually lessening the symptoms)
I just found out, that I am no longer RRMS, and now I am at the SPMS stage. My Neurologist said, because my MRI came back, and showed no activity or inflammation with no new lesions from my last MRI that was done 4 years ago. I know talk about being neglected right by Neurologist in my neck of the woods?? 🤷♀️ 🤦♀️ Anyways now she is telling me that I do not qualify to go on any DMT, because she said it will not help me in any way, and also it won’t be covered by insurance from the Canadian Quebec Government. I don’t believe this is true, after watching all your videos for so many years, and especially the one on SPMS. Now this makes me really upset 😢 and heartbroken 💔 to find out that I cannot get on a DMT, to slow this monster down. I’m 45 yrs old, and I have a 3 kids ages 13,19, &22. I cannot go out like this, and refuse to give up. What can I do about this Dr B? I really need some advice, and help here 😢💔🙏
Question- I’m RRMS for 23 years- guessing inactive as per my last mri- ( haven’t been treated with steroids for 3 years for MS) Copaxone 23 years No real new symptoms- just overall slow progression of them all.. seemingly a little quicker the last few years. If I had muscle spasms- now I have them in more areas-/ if I had fatigue- I now have it more/ These “ episodes “ of symptom activity are almost a month to 5 weeks long. With about the same # of good weeks in between. I see my neurologist every 4-6 months. My neuro tests in the beginning don’t usually change. Unless I’m in need of steroids ( for muscle weakness usually) as I said last treatment with roids 3 plus years ago. I personally see myself walking the rope towards SPMS. I do yoga routinely but I still see my other symptoms ( spasms, cognitive issues, sleep issues, ) worsening over a long time- I can see a change happening. But it’s so slow only if you don’t see me regularly could you tell. My question is- Have YOU seen patients like myself. Or heard patients describe their MS over a long time like I just did? Almost like Sloth progression .. On a tight rope... heading towards SPMS? 😂
I have a much better understanding of SPMS now. Your discussion on the potential specufic role of B cells in terms of the pathogensis here was really interesting. It made me think about the possible of a potential therapeutic target. Thank you for all you work, Dr B!
If you’ve worked your butt off and brought you EDSS score down to say a 3, while still having some symptoms getting worse that’s evident on exam without a relapse, does the lower EDSS mean it’s not SP? PT taught me Functional Stretching and Strength Training. That and my DMT brought that score super low again! Still working out daily “filling my pool as it’s leaking”, as told by Dr English. Thanks Dr B!! 🤗❤️❤️
Dear Doctor Boster./ please doctor I need your help? ok here it is I was once on Avonex injections for 10 years; & I actually stopped taking it so right now I'm not on anything isn't dangerous not too have anything./ right now I'm 60 years old & had started M.S. at 20 years./ NOW I really don't know what to do doctor, please I really trust U to the max.Doctor help should I go now for new types of infusion till the day I will die? help doc. Boster./
Suzanne Sesbreno , how are you? I woukd never answer for dr B, one of my 2 heroes(Trevor wicken in The MS Gym the other) 2 things....I knowthat dr Bosters opinion of being on an MS DMT for our entire life is vital. I for one did Lemtrada and hopefully I’m done with treatment forever. And number 2, join The MS Gym on FB. Trevor Wicken is a miracle maker and has helped me improve every symptom using MS Specific Movement and Mindset Training Those 2 things, Lemtrada and The MS Gym has brought me out of my wheelchair I hope you will join the 20,000 already joined
Thanks for the video and Happy Father's day! As I've said before SPMS terrifies me and how it will affect my future. My question is: at what age does a "normal" brain start to atrophy? I can't find an answer on the internet. I'm just trying to understand the leaky pool better ;)
Don't miss part two: Treating SPMS! ua-cam.com/video/qvyKqhre70g/v-deo.html
Ampyra is good fo r me? edss =4 i have atack
Hello Dr. Boater, I live in upstate NY and for years I suffered from symptoms that had mimic a few disorders of connective tissue disorders and autoimmune disorders. In the past 3 years my health had decline and even with weekly injections and other meds, I feel worst. My inflammation increased, my chronic fatigue and also muscle weakness and joint pain. Currently I've been treated for 3 possible disorders (dermatomyositis/Lupus, and Sjogrens) but nothing concrete even after blood works. There have been suspicion of MS but Doctors keep tossing me to other specialist and my neuro won't send me to an MRI of brain and Spine since is too busy trying to treat my chronic migraines. Please can you advice me in what can I do next Im tired if feeling sick. Thanks so much
@@lizj5063oh Liz. I’m sorry to hear this. I am an ms patient and it sounds to me, that you need a new neurologist!! If you’re experiencing migraines? An MRI should have been the FIRST thing they ordered. Mine let me down too and I fortunately found a new team of drs who actually treat each patient individually, as it should be, because we are all different. I would tell them you want an MRI of your brain and spine. I would tell them that you feel it is necessary to have a lumbar puncture done! Also, have them test you for JCV. That is just a blood test, but a very important one. Mine did not give me that test until three years into my diagnosis and now I have new underlying health conditions due to them giving me the wrong kind of medicine. If only I knew I had JCV, I may not be in the progressive phase now. I wish you the best and I hope you find the answers you need.
Fatigue, unfortunately, doesn't show on the EDSS. If fatigue increases making over the last three years, but motor function is not that affected, can that cause a diagnosis of SPMS?
Actually, there not being any objective measure of fatigue, at least to my knowledge, is one of the most frustrating part of this disease. Fatigue is the leading cause why people are leaving the workplace. But insurance will challenge your fatigue because it can't objectively be measured. Is there any way to measure fatigue objectively? Any way out that situation with disability coveragee?
Here's a playlist on Fatigue Ronald: ua-cam.com/video/W9S-tYMy47o/v-deo.html
H
This was tremendous. Thank you. My husband hasn't had activity since 1997, but has had significant progression of disability. I have always been confused that he was clearly worsening, but also not responsive to meds and also not adding lesions. For the first time in 25 years, I got it. Thank you.
Dr. Boster your posts always come up when I need them. Thank you so much.
YW! #WeHaveMS
Thanks for another great topic. I think we all wonder what the markers and timing are in how we transition from one stage to the next. I enjoyed your analogies,personal connections and diagrams that helped us better understand this disease course. MS is like a thumbprint no two individuals are the same.
exactly! TY for watching AJ's HR!
Really great video, very clear info. You’re so awesome! Saving the next video for tomorrow. Have a good evening🌙
Super cool Lynn. TY for the support! Let me know what you think about #2!
Thanks so much Dr. B. This information is so very helpful. Could you a video on the EDSS score? I find myself frustrated by it because it seems to only look at how the muscles work or not; it doesn’t seem to include fatigue, cog fog, and other debilitating symptoms. Isn’t it time to come up with a new scoring system?
I would also like to understand this better for the same reasons. My neurological exam is good but I have so many invisible symptoms that are quite disabling. Also, I have leg weakness but it only reveals itself after I walking a few blocks or overheated.
I’ve changed to secondary progressive after having rrms for about 20 yrs . I knew it was coming and it means I’m going downhill at a much faster rate now despite only having had a couple of relapses in the last couple of yrs . It’s scary as I live alone and my only contact with the human race at large is carers coming to help me . It scares me because all the things I was still able to do independently are getting fewer and fewer with every month that passes . I’m 50 and wish I wasn’t here any more as the future can only be worse than now , which is more than I can cope with on a good day , which I don’t seem to get very often these days .
I understand exactly how you feel. Have you been treated for depression? Have you tried an online support group? I am in the same situation. I just want you to know that I hear you and I am so sorry for what we go through. Assisted living where we can receive care and social activities is prohibitively expensive.
I really understand how u feel. I can't take too much more of the ðownward spiral either. I was just driving a week and a half ago. Now I have problems walking down the stairs. I am 59 and am starting to be ok with not being here.
Very clarifying explanation.
Hi Doc B. I was trying to view the scale at the end of this video. It was blurred but I would really like to check it out. Could you supply us with a link in your second video please and thank you!
Howdy Jeanine. Google "multiple sclerosis severity scale" ;)
@@AaronBosterMD Thank you very much... I guess I could have thought of that.. hahah Cog fog working over time!
The pool analogy was so useful to help understand progression! I've always struggled to understand why if I'm feeling good now with some lesions I should feel worse in the future with no new lesion, but now I see it clearly why! Thank you so much for making this video.
Stephen Krieger MD at Mount Saini. He created it. I love this model for helping folks understand activity, progression, functional reserve, and more. TY Dr. Krieger
I am glad you added the menigeal FO B cells that opened a door to my understanding better how progression might be distinguishable from Relapsing actually a different disease process...maybe.... Does that low grade inflation cause damage to the tissue like lesions are, we just cant see it on imaging yet? or is it just like when you have a cold it just makes it harder to do what you normally can do and until you get rid of the inflammation you feel like crud by analogy?
I also wonder how you now if the meningial B follicles are active? Do they show up on MRI?
Infection not inflation but i was hoping for a response...
Thank you dr. aaron. bless your heart. I have RRMS. I have fatigue, weakness, imbalance and all of that but the major pain comes from anxiety. I used to have anxiety disorders such as GAD and Pure Ocd and depression and lexapro cured them all, but after i was diagnosed with RRMS, there have been a wave of a new, burning like anxiety that is partially treatment resistant. I was put on tecfidera 2.5 years ago and will switch soon to ocrevus and I'm very excited about it, but in through trial and error, i found a pretty fantastic combo that go along with the tecfidera that improved every MS symptom to a good degree. about 25% improvement overall Fatigue, imbalance, weakness, fuzzy hed and anxiety are all reduced by a 25% percent. What a relief. I was in so much mental pain and fatigue and now my head is above the water and body feel more fluid...
I'm not a doctor, i don't advice anyone to take anything without professional opinion. The combo is
1- Metformin XR
2- Coq10
3- ursolic acid (mainly from thyme, i don't take a supplement)
4- Extra virgin olive oil (2 Tbs)
5- Fish oil 1200 mg (2 gels)
6-flaxseed oil 1000 mg (2 gels)
the three biggest players i noticed are the metformin, CoQ10 and ursolic acid. If i miss any of them for more than 24 hrs, I feel very bad.
Thanks so much for breaking this down Great info loving the additional diagrams on this video ! on to part 2
right on, right on MS Memes Lynne! #WeHaveMS
Has it ever been studied whether or not MS Warriors whose disease is more aggressive all share a faster metabolism? Curios minds want to know. Lol
nope!
Follow up question-Is it possible for a layman to present an idea for study to, forgive my ignorant titles here, MS research scientists? Would love to know if there’s a way an inquiring mind can present some of the questions on it for posterity, not profit.
Disability Progression Sir, Suddenly one day you have a fall & break your leg and walker/stick fro that day, When I asked Neuro, why amnotable to walk Ortho said fracture healed, was told "Make stick part of your life, no further falls" - I was not thrilled, thinking back I can relate to Leaking Pool - Thanks Dr
TY for sharing that personal example. I appreciate your comments and support here Raguraman, TY! #MSWarrior
👍👍👍 comprehendable clarity 👍👍👍👍
I am always scared because my worst attack i had so far prior to treatment was my eyes got blurry and weren’t coordinated so I got double vision plus my peripheral vision was moving like a vertigo, after 3 weeks it went back to normal. I’m worried that it will come back in that graph you mention that with age old symptoms will come back, is this correct?
Thank you. This was a Greta video. I think I understand the medical difference of relapsing and secondary. My MRIs have always been stable, but the symptoms keep coming.
I take various meds for symptomswith my dmd. How is progression measured, if taking meds (since the meds are actually lessening the symptoms)
Howdy Andrea. Measuring progression isn't altered by treating symptomatic medications.
Amazing video as always Dr B! Great topic, great explanation, great doctor. Ty for all you do all the best. Mz
Right on Matt! TY for the support!
Can Secondary Progressive MS lead to demitina?
WOW!!!
Great Job on this one...gonna watch part 2 now!
Thanks
TY Janeel! #WeHaveMS
Relapsing remitting ms is what I have.
How can I ask you a question? Is it possible?
Can you have progression with RRMS without having PPMS/SPMS?
this is a currently debated topic, but IMO, yes.
I just found out, that I am no longer RRMS, and now I am at the SPMS stage. My Neurologist said, because my MRI came back, and showed no activity or inflammation with no new lesions from my last MRI that was done 4 years ago. I know talk about being neglected right by Neurologist in my neck of the woods?? 🤷♀️ 🤦♀️ Anyways now she is telling me that I do not qualify to go on any DMT, because she said it will not help me in any way, and also it won’t be covered by insurance from the Canadian Quebec Government. I don’t believe this is true, after watching all your videos for so many years, and especially the one on SPMS. Now this makes me really upset 😢 and heartbroken 💔 to find out that I cannot get on a DMT, to slow this monster down. I’m 45 yrs old, and I have a 3 kids ages 13,19, &22. I cannot go out like this, and refuse to give up. What can I do about this Dr B? I really need some advice, and help here 😢💔🙏
Sharing
Do you help people do coimbra?
I’ve just been diagnosed with SPMS only 8 years after diagnosis of RRMS. Mavenclad didn’t help either!
Question- I’m RRMS for 23 years- guessing inactive as per my last mri- ( haven’t been treated with steroids for 3 years for MS)
Copaxone 23 years
No real new symptoms- just overall slow progression of them all.. seemingly a little quicker the last few years.
If I had muscle spasms- now I have them in more areas-/ if I had fatigue- I now have it more/
These “ episodes “ of symptom activity are almost a month to 5 weeks long. With about the same # of good weeks in between.
I see my neurologist every 4-6 months. My neuro tests in the beginning don’t usually change. Unless I’m in need of steroids ( for muscle weakness usually) as I said last treatment with roids 3 plus years ago.
I personally see myself walking the rope towards SPMS.
I do yoga routinely but I still see my other symptoms ( spasms, cognitive issues, sleep issues, ) worsening over a long time- I can see a change happening.
But it’s so slow only if you don’t see me regularly could you tell.
My question is-
Have YOU seen patients like myself. Or heard patients describe their MS over a long time like I just did?
Almost like Sloth progression .. On a tight rope... heading towards SPMS?
😂
❤️
Where is the Boster Clinic?
We're in Columbus, Ohio. BosterMS.com
I told the shotgun story to my neurologist. He loved it! 😆
Do all lesions turn into black holes over time
I have a much better understanding of SPMS now. Your discussion on the potential specufic role of B cells in terms of the pathogensis here was really interesting. It made me think about the possible of a potential therapeutic target. Thank you for all you work, Dr B!
If you’ve worked your butt off and brought you EDSS score down to say a 3, while still having some symptoms getting worse that’s evident on exam without a relapse, does the lower EDSS mean it’s not SP? PT taught me Functional Stretching and Strength Training. That and my DMT brought that score super low again! Still working out daily “filling my pool as it’s leaking”, as told by Dr English.
Thanks Dr B!! 🤗❤️❤️
Dear Doctor Boster./ please doctor I need your help? ok here it is I was once on Avonex injections for 10 years; & I actually stopped taking it so right now I'm not on anything isn't dangerous not too have anything./ right now I'm 60 years old & had started M.S. at 20 years./ NOW I really don't know what to do doctor, please I really trust U to the max.Doctor help should I go now for new types of infusion till the day I will die? help doc. Boster./
Suzanne Sesbreno , how are you? I woukd never answer for dr B, one of my 2 heroes(Trevor wicken in The MS Gym the other) 2 things....I knowthat dr Bosters opinion of being on an MS DMT for our entire life is vital. I for one did Lemtrada and hopefully I’m done with treatment forever. And number 2, join The MS Gym on FB. Trevor Wicken is a miracle maker and has helped me improve every symptom using MS Specific Movement and Mindset Training Those 2 things, Lemtrada and The MS Gym has brought me out of my wheelchair
I hope you will join the 20,000 already joined
Le lehet fordítani valahogy?
Brilliant, thank you
Thanks for the video and Happy Father's day! As I've said before SPMS terrifies me and how it will affect my future.
My question is: at what age does a "normal" brain start to atrophy? I can't find an answer on the internet. I'm just trying to understand the leaky pool better ;)