Progression

[kandykone1]

I can’t understand how MS progresses with no new lesions? Or is that not correct?

[RipplingHope]

I certainly don’t know how to explain it. I have experienced it. No new lesions, no clear exacerbation. MRI showed new healed lesions and brain shrinkage (atrophy).

[RoyceNewton]

Talk to your neuro, if he is no help try msAA then the NmsS, and read a book about how ms works. Technical but will be your best source

[kdali]

There’s a great depiction somewhere of lesions as icebergs and shows as we age and lose neurological reserve, the disease becomes more burdensome. But, I can’t remember who or where it is now...😬

[ahrogers in reply to kdali]

I think you might be talking about the topographical model for MS where it shows lesions as icebergs rising up from the bottom of a swimming pool. The water level is our functional reserve. We only have symptoms if the iceberg rises above water level which can happen either by growth of the iceberg (lesion) or lowering of the water level (functional reserve). This is why keeping our general health at it's best through diet, exercise and managing other illnesses keeps our functional reserve level higher so the lesions don't show symptoms even though they are the same or why we may have previous symptoms return even if there are no new or worsening of lesions.

This is a link to the neuro who developed the model describing the model.

medscape.com/viewarticle/84...

[kdali in reply to ahrogers]

Thanks!

[greaterexp in reply to kdali]

Aaron Boster describes this well on You Tube.

[kdali in reply to greaterexp]

He may be who I was thinking of, ty!

[kandykone1 in reply to kdali]

I found that video. It was helpful. Aging in general doesn’t help our disease so it’s double whammy.

[kdali in reply to kandykone1]

I’m glad you found it helpful! True, but neither are guaranteed.

[DM0329]

Progression for me has been mostly "silent" meaning that most lesions occurred in spots that didn't cause immediate outward responses. My MRI after I was dx in 1994-next one in 1997 showed substantial "silent" progression and I started on Avonex (September 1997) that I still continue today.

My MRI shows "a lot of stuff" and "many black holes" but I look so good (well if I shower, dress accordingly, and put on make up) yet 25+ years after my dx, I am now on SSDI (and I suspect slowly transitioning to SPMS). But, outwardly, I look the same.

May I suggest becoming familiar with the theory that MS is a "leaky swimming pool" (founded by a New York neurologist---sorry but I forget his name) but Dr. Aaron Boster frequently borrows his leaky swimming pool theory when he lectures. You may be able to find his lectures on YouTube. I found that the "leaky swimming pool theory" explains why we progress regardless of how our MRIs look. Check it out

[Bodega1939]

There is information that the brain stem is involved in some MS situations.

[Frances_B]

Enrol in the wonderful MS MOOC free online course which is running again from about mid-March and you will probably get answers to questions you didn't even know you had. Others have done this course and found it excellent - and it was recently rated one of the top 100 online courses, and was ranked No 1 by one organisation. It runs for 6 weeks and is designed for PwMS, family members, carers, health professionals (such as physios etc), and anyone who just want to know a bit more about MS.

ms.mooc.utas.edu.au/

[goatgal]

In the 10 years since my diagnosis, I have had no relapses or new lesions, but I have been on a slow decline. In my case, part of this is due to age. It may also be that I have progressed from Relapsing Remitting to Secondary Progressive. I'm not sure that these labels are helpful in a disease that has so much variation between individuals, because once the damage is done, the central nervous system is constantly needing to work around the damaged transmission lines by creating new pathways. One of the great benefits of good physical therapy is the benefit of helping the brain reprogram some of these work arounds. It may also help you to take this excellent and free online course from the University of Tasmania in Australia. It starts again soon. Many of us here on the forum have taken the course to deepen our understanding of MS. ms.mooc.utas.edu.au/landing...

[LadyLeo]

I have no new lesions and a my diagnosis was officially changed to (active) secondary progressive late last year. I've had MS (rrms) since 05 and was largely asymptomatic during the first 5 years or so though annual MRI would show new spinal lesions, I would exacerbate go on my course of Solu-Medrol and my life would go back to pretty much normal. I took that almost for granted looking back. The last 2 years have been a pretty steady decline,(my rollator was delivered yesterday actually); though my MRI remains largely unchanged. MS is a moving target. The more I learn the more I understand I know nothing to be certain but that. 🧡🙏🏽💪🏽

[FearlessMsMimi]

I feel that’s possible because I’m going through that right now. Leg went numb 1/4/20, groin to ankle and I’m still numb knee to mid calf. Dr’s did MRI lower back, back X-rays, etc. they said it’s not my MS. My frustration is they didn’t do a full MRI of Brain, thoracic spin, and lumbar?

YES, I believe this can be possible and old lesions can be aggravated.

[pamgarner]

my dr. told me,"you can have new lesions with no symptoms and no symptoms with new lesions", again a disease of mystery

[pamgarner]

i said that wrong! new lesions with no new symptoms and new symptom and no new lesion

[DIsneyQueen]

I have PPMS. My last MRI showed no new lesions. My neurologist told me that is typical with my type of MS. The MRI did show atrophy. He told me as we all age our brains atrophy, but those of us with PPMS our brains atrophy at a significantly higher rate. My physical ability is decreasing but I tell everyone I am still as smart as I always Have been despite my brain atrophy😁

[sashaming1]

MRIs don't see all lesions (only white brain matter vs. gray brain matter or the opposite). My MRIs, at least the ones that my insurance allows due to the cost and time, only look at the white matter, yet, lesions may be increasing in the gray matter.

[mrsmike9]

My theory is what's happening in the grey matter in the brain. They only check the white matter. I've been reading more and more about the grey matter affecting MS.

[cookie12669]

I have no idea but I have secondary progressive MS. I was diagnosed with this in 2017 at Mayo clinic FL. Before that my docs in Springfield IL kept telling me I was just getting older. no MS. I am 73 now. The docs in Springfield IL are BAD. MY MRIs showed MS lesions but they were never seen except when I went to Mayo Clinic. Symptoms were many for many years.