Progressing MS

[debgen]

i recently attended an MS conference dealing with new research on Progressing MS. The speaker was a neurologist from the University of Rochester, NY and he has been given a multi-million dollar grant from the National MS Society to research this topic.  

His studies are showing  some interesting things:

-MS progresses over time. Most people with RRMS will develop into SPMS over time. Of course, due to many factors  for each individual and the un unpredictability of the disease, the amount or timing  of when this will happen is still unknown. It seems the longer you have RRMS, the more likely you will be for it to become SPMS.

-Presently there has been a great deal of progress made in the advancement of therapies. However all these therapies are only targeting the reduction of relapses and not targeting the progression of the disease. His research is studying how the progression effects the CNS and the brain shrinkage and working on how to slow it down and eventually to stop it!

-The final goal is to try and find ways to repair the damage. Right now Stem cell research appears to be the best hope for that and he admits we are years away from completing that  in the USA.

As someone who has had RRMS for 30 years and it began turning into SPMS a couple of years ago, I found this both fascinating and hopeful. so I wanted to share it with all of you :)

Cheers,
Deb

[maxthecat43]

I posted too soon.  

I've always thought of things this way:  axons being similar to copper wire, and myelin as similar to the plastic insulation around it.  Relapses damage the myelin (plastic insulation around the wire); I thought of axonal degeneration as similar to corrosion of the now unprotected wire.

Does this sound okay, as an explanation?

Is there any way to see axonal degeneration with MRI, or other testing?  

[maxthecat43]

In SPMS, and progression in general - isn't axonal degeneration to blame?  

[supermum_ms]

I get that relapses and progression are different but if the research is coming up with fewer 'MRI detected' lesions in their research subjects, who are on a DMD compared to those who are not and its lesions that are the cause of disability, and if disability levels are what is used to measure progression.

Doesn't that mean DMD's (if they work for you) not only help reduce relapses, but also reduce the number of (MRI detected) lesions and should theoretically help slow down progression?  

What exactly is meant by progression? This term is used when they are talking about the levels of disability a person has but its also used in relation to MS types, specifically relapses or lack of. (my pea brain is spinning lol)

what about... (a) its widely accepted that each person sx list is unique to them (b) there is no blue print to understanding when the next relapse will happen (c)  what damage the next relapse is going to produce (d) lesion location is more pertinent than number of lesions (e) lesions are not so easily mapped to sx's (f) MRI's are the research tool but researcher have proven that MRI's don't detect all lesions (g) the date your dx-ed isn't when MS started etc etc etc    

lol tooo much food for thought..........JJ  

[rendean]

It is my understanding , as sho said, that relapses and progression are two different entities. I was also under the impression that progression does continues regardless of relapses because the CNS is still not being protected.

Take for example Doublevision's statement she made in the thread about doubting your diagnosis. She had L'hemitte's sign but no visible lesions. She didn't have any visible lesions until a year later. Progression with only an increase in subtle symptoms such as paraesthesias (sorry DV, not to make light of your symptoms but subtle compared to your optic neuritis for instance) without a major relapse such as an optic neuritis. Eventually, the relapses did occur but have been held in check , I beleive. DV correct me if I'm wrong please!

The true need is for neuro PROTECTIVE drugs not onlydrugs to slow the diesase.

Ren

[shoshin]

From what I can tell, there is controversy about whether and how much the existing DMDs slow down progression. It is, as Alex pointed out, harder to measure progression. We don't have good ways to measure it. It's also more expensive because most people progress slowly so a trial with progression as an outcome takes more time.

It is thought that relapses and progression are two different processes so it isn't clear to what extent stopping relapses stops progression. Mouse Doctor on the MS Research Blog did a nice series to explain the difference:

http://multiple-sclerosis-research.blogspot.com/2011/08/whilst-trying-to-explain-how-white.html
http://multiple-sclerosis-research.blogspot.com/2011/09/educationtargeting-progressive-ms-part.html
http://multiple-sclerosis-research.blogspot.com/2011/09/education-targeting-progressive-ms-part.html
http://multiple-sclerosis-research.blogspot.com/2011/09/educationtargeting-progressive-ms-part_12.html
http://multiple-sclerosis-research.blogspot.com/2011/09/education-targeting-progressive-ms-part_14.html
http://multiple-sclerosis-research.blogspot.com/2011/09/education-targeting-progressive-ms-part_16.html
http://multiple-sclerosis-research.blogspot.com/2011/09/education-targeting-progressive-ms-part_19.html
http://multiple-sclerosis-research.blogspot.com/2011/09/education-targeting-progressive-ms-part_08.html

The current DMDs target the immune system, which is the driver behind relapses. It may be that if you stop the relapses well enough and soon enough, you will also stop progression. However, at some point the progressive process takes on a life of its own and keeps on even if you stop the relapses (or they die out naturally). The current DMDs would be more effective if paired with neuroprotective drugs. There is, as Deb pointed out, currently a great unmet need for and a lot of interest in developing drugs that can protect the brain and encourage repair. Fingers crossed that they're coming soon.

sho

[anon07072023]

This is very interesting.

[debgen]

Thank you JJ, I obviously couldn't have said it better!

Cheers :)
Deb

[supermum_ms]

Interesting discussion you've started Deb, if you think about it, its kind of odd that we don't talk much about the progressive types, especially when the conversion rates are so high.

"Most people with relapsing remitting MS will eventually develop secondary progressive MS. It varies widely from person to person, but on average, around 65 per cent of people with relapsing remitting MS will develop secondary progressive MS 15 years after being diagnosed."

http://www.mssociety.org.uk/what-is-ms/types-of-ms/secondary-progressive-spms

"Of the 85 % of people initially diagnosed with RRMS, approximately half will transition to SPMS within 10 years, and 90% will transition within 25 years." http://www.nationalmssociety.org

There isn't much written about those that have reached the progression stage but are still experience relapses - Relapsing Secondary Progressive MS. I get the distinct impression from everything i've read over the years, that progression or secondary stages have a lot to do with a persons level of disability.

So basically if with RRMS you are expected to 'mostly' recover from a relapse but over the years, the level of recovery becomes less and less, and starts leaving behind more or higher levels of disability. Its possibly just the level of disability that a person has, that makes the transition to SPMS to more likely to of occurred.

"Neurologists generally agree secondary progressive MS is a "sustained build up of disability, independent of any relapses".

http://www.mssociety.org.uk/what-is-ms/types-of-ms/secondary-progressive-spms    

"In SPMS, the disease continues to progress and the symptoms continue to worsen whether or not the person is having a relapse. And over time, most people with SPMS experience fewer inflammatory relapses or none at all."

http://www.nationalmssociety.org/about-multiple-sclerosis/relapsing-ms/secondary-progressive-ms-spms/how-spms-differs-from-rrms/index.aspx

I've always thought the DMD's do help slow progression 'as well' as reduce the number of relapses, the less relapses the longer it takes to reach secondary stages. Still never quite worked out, how they fit in to the equation the relapse rule [return or worsening of sx's and or newly arrived sx, experienced for longer than 24hrs and no less than 30days since the last relapse] which doesn't necessarily match up with the MRI evidence of a relapse.

lol And that leads my pea of a brain to wonder, if disability levels do play a large part in SPMS, then what about those who have spinal or cerebellum lesions, cause I would of thought they would have high disability levels so does lesion location also play its part too?

Food for thought.......JJ  

[SarahL2491]

My ongoing permanent symptom was my foot drop and the foot brace seems to have stopped that.  I am still having balance problems but they are intermittent.  My cognitive fog and memory problems did cause me to decide to quit work, but they are intermittent, along with my balance problems, so not sure whether or not to call them just nuisance symptoms or relapse or what?

I am on Tysabri (#14 coming up) and am JC+.  I tested positive before I started but have never been on any other DMD

Is it possible to slow progress and reduce relapses?

[debgen]

I have not been officially dx with SPMS. I may still be RRMS but since starting Gilenya I too haven't had any relapses. My MS has definately progressed  to the point of disability after  my last 2 relapses prior to the Gilenya. I have ongoing permenent symptoms such as severe spasticity.

I will not take Tysabri because I am JC+ and the Gilenya seems to be working so far.

Deb

[kwarendorf]

Here's what I don't understand. What is the difference between reducing relapses and slowing progression?

My label is SPMS. I have not had a major relapse in almost 2 years. I do have ongoing, permanent symptoms. I have also been receiving Tysabri infusions since my last relapse.

Has my MS stopped progressing, or has my relapse rate simply been reduced? Inquiring minds want to know!

Kyle

[HVAC]

That is what I have heard to. It is so hard to measure progression that is the main reason there are so few studies. The studies for PPMS wanted me to have multiple LPs and I am not signing up for that. Plus the drug companies make less money on progressive MS so they are going where the money is RRMS. It is easier in RRMS studies to show less lesions than it is to show slowing progression. Now with my cancer I am not eligible for MS Studies. Many people with progressive MS also have many other health issues compared to the RRMS population. Simply because there are more people with RRMS and they are younger.


Alex

[saltlover]

have you tried tysabri, did he say anything about the drugs. Who was the speaker?

[SarahL2491]

well, they figure I've had it for 30 yrs and don't see SPMS yet, thank goodness.  but intresting