Burnt-out MS

[onceagain]

I was listening to a teleconference by a neurologist who is reknown for his knowledge of MS. During the conference, he stated that almost everyone stops progressing. This tends to occur in the late 60's. Another neurologist mentioned during his conference that MS can "burn out " as one ages. Has anyone else ever heard this?

[Leola Stotts]

Interesting to hear you speak of that. When I was being diagnosed, I had a neuro-opthomologist tell me almost the same thing. She said that since I was diagnosed so late, (I was 56), I would not get any of the worse symptoms. That is nice to hear to validate what I was told.

[Nebbykoo]

Mine stopped. At least, I'm pretty sure it has. I don't take meds anymore.
It stopped in 2004 when I started taking turmeric everyday.
I have symptoms from flair ups from before, but nothing new since then. I'm pretty happy about that!

[Sequoia]

I've had no new symptoms for several years, but my level of disability from previous exacerbations has continued to progress slowly but surely. I'd be pretty happy if it stopped right about now! (I'm 66.)

[Kippy]

That would be really good if it's true.

I was diagnosed with PPMS at 59, but had symptoms a year or so before that. Have gone from walking well to having foot drop and balance problems, as well as "wearing out" after walking awhile.

I'm now 63 and won't have any problem with aging if I could get rid of the MS progression!

[onlyme]

I am 54 and I have gotten worse and worse since 2006. I'm on Tysabri, Ampyra, and all the 'regular' Meds. So this is new info for me.

[Seasha]

I read somewhere (don't remember) that it does "burn out" as a person ages b/c the immune system is not as active. I'm ready for it to stop now!! The progression I'm going thru is slow, but there nonetheless. Seems like it is more prevelant each passing year . I'm 62 and SP.

[0485c10]

YEP ME! I've heard of it

and to be truthful it is my great hope. I'm planning on my MS to burn out somewhere around 56, at least i want to stop my meds then and see if it has burned out
8 more years til then...

i first read it in this article by Dr. Volmer of the Rocky Mountain MS center... in first paragraph of page 4 it says..

when we look at the life stages of MS the majority of them seem to have an inflamatory process that is very brisk at first, then it decreases over time then for reasons we don't understand it shuts off in the late 50's or early 60s.

http://www.mscenter.org/images/stori...er09lowres.pdf

56 is the first year of the late 50's and i'm gonna check the first year i can.. no meds then

kippy, sequoia--its the inflamatory process that requires meds, that burns out (shuts down). ppms isn't included in the burn out observation.. me i'm gonna be in the 10% that remains RR after 25 year, then its gonna shut down out in my late 50's for reasons we don't fully understand. but we don't fully understand why MS occurs in the first place, i don't care if we don't fully understand why it shuts down! i just know i'm gonna be one of the people with MS who experiences an MS shutdown! when i am 56. 1 year into my late 50's. almost as good as getting a DL when i was 16.

[Luongo]

I'm sure Annette Funicello will be relieved to hear this.

[SNOOPY]

onceagain,

The information given at the conference is not new information.

The thought that MS "burns it's self out" has been around for many, many years. I was told the same thing at the time of diagnosis, although, my neuro did say he had never seen it happen.

I don't believe it happens but that is a personal opinion.

[aitch10]

Does that mean I need to wait 30 years? Crap!

[KoKo]

0485c10:

its the inflamatory process that requires meds, that burns out (shuts down). ppms isn't included in the burn out observation..

That's a bummer..........

Take care,
KoKo

[Sequoia]

kippy, sequoia--its the inflamatory process that requires meds, that burns out (shuts down).

Just to be clear, the inflammatory process continues well into Secondary Progressive MS. It's substantially reduced, but it's still there. During that time, DMDs may still have some effect. Betaseron, for example, is approved for SPMS.

I've often heard people on the MS boards say that RRMS is the inflammatory stage, and SPMS is the non-inflammatory sage. Sadly, that's just not true.

By the time MS "burns itself out" (inflammation related to MS stops), permanent disability can be quite severe. At that point, all that's left to do is manage symptoms as well as possible. I'm at a 7.5 on the Kurtzke scale, and hoping to stay there...but I'm a realist, and I'm not counting on it.

[GIGI69]

Yea!

One reason to look forward to aging while everyone else is looking for the Fountain of Youth.

[ApVish]

My Neuro kinda said the same

She did say MS can burn out as we age, but also told that the inflammatory part of the disease stops, but the atrophy and the axon deaths still continues which will still lead to progressing disability.

We were like, why would we care if our brain MRIs looks/doesn't look pretty, all we are worried about is the symptoms...