SPMS Part One: Demystifying Secondary Progressive MS

Don't miss part two: Treating SPMS! https://youtu.be/qvyKqhre70g

Dr. Boster your posts always come up when I need them. Thank you so much.

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.

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.

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.

Really great video, very clear info. You’re so awesome! Saving the next video for tomorrow. Have a good evening🌙

Very clarifying explanation.

Thanks so much for breaking this down Great info loving the additional diagrams on this video ! on to part 2

WOW!!! Great Job on this one...gonna watch part 2 now! Thanks

Amazing video as always Dr B! Great topic, great explanation, great doctor. Ty for all you do all the best. Mz

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 .

👍👍👍 comprehendable clarity 👍👍👍👍

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.

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!

Brilliant, thank you

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?

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 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?

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? 😂

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!