Does MS burn itself out?

[marti]

My neuro told me today that after so long MS kind of burns itself out and stays in a sort of holding pattern. Has anyone heard this?

She said this happens with age. It does not "cure" or go away, but wherever you are symptom wise at a certain time, is where you will or might stay.

Mine took me off Copaxone today. Of course, I had already stopped taking the shots. Was having weird reactions lately. But, I'd like to hear your opinions about this aging thing and the halting of the MS progression.

[aitch10]

Here's to hoping!

[22cyclist]

Marti: MS reaches a secondary progressive stage after you have had it for around 10 or more years. At this point you may not have anymore relapses, but you still have progression. There are no DMDs approved specifically for primary or secondary progressive MS. This may be why he said there is no need to continue with one. You will still have progression though so I do not know why he said it would burn itself out other than you may no longer have relapses.

Good luck
Take care
Lisa

[dyin_myelin]

Snoopy's MS has burned itself out. My brain is still being decimated by inflammation so I can't help you personally.

It actually took 30 years for my MS to become Secondary Progressive--just long enough for me to start believing I'd "kicked" it. I stopped having severe relapses about 12 years in, so it did seem like it had "burned itself out."

Although I had mild symptoms during those 20 or so quiet years, and they're still relatively mild, I have a lot of lesions, mostly on my c-spine. Now it's harder for my body to compensate for the damage, I think. Too bad DMD's weren't available when I was diagnosed. By the time they were, I was convinced I didn't need them.

[marti]

Snoopy's MS has burned itself out. My brain is still being decimated by inflammation so I can't help you personally.

Ok. So can you tell me what that means for Snoopy? Has she reached a kind of plateau? Or could she still progress further? Is she still on shots?

I just don't understand why I have never ending pain and dizzies and other symptoms which seem to be worse or last longer. My neuro used to believe I had Progressive Relapsing, but then never really documented it permanently. I just want to know where I stand. Guess I should have asked more questions while she was in front of me. In fact, I met with her and her NP together. They counted a lot more lesions than I orginally had. But no black holes and none on the MRIs of my thoracic and lumbar spine.

[SNOOPY]

Snoopy's MS has burned itself out.

That is the thought at this point. I, however am still a little skeptical

marti:
So can you tell me what that means for Snoopy? Has she reached a kind of plateau? Or could she still progress further? Is she still on shots?

Hi marti,

I have never used any DMD so 'shots' for me are not an issue regardless.

At this point and after 29 years of a MS diagnosis with symptoms that go back to childhood what this means for me is (per Neurologist):

I have not had clinical signs of progression for several years.

My MRIs have shown improvement. I have gone from numerous (too many to count) lesions on my c-spine to a countable 3. No relapses since 2002.

I still have MS. I still get to keep any existing symptoms (permanent or those that come and go) that I have. I get to keep any limitations/disabilities that I have.

It is "highly unlikely" that I will progress any further than where I am at.

As I said earlier, I am skeptical, as I have a healthy respect for what this disease can do.

[fishead]

While MS may hit a plateau for a while, it is always there. By its own nature, MS is a progressive disease.

[misslux]

I just don't understand why I have never ending pain and dizzies and other symptoms which seem to be worse or last longer.

Couldn't these be attributed to your other ailments?

[misslux]

I hit send too soon.

Also, sometimes (most of the time?) symptoms can stay. I'm not sure where people (not necessarily you) get the idea that people repair 100% after exacerbations. Everything I've read/been told is that things aren't going to be 100% after recovering from a flare for RR. Can be close, but not 100%.

[golfore]

My neuro told me today that after so long MS kind of burns itself out and stays in a sort of holding pattern. Has anyone heard this?

She said this happens with age. It does not "cure" or go away, but wherever you are symptom wise at a certain time, is where you will or might stay.

Mine took me off Copaxone today. Of course, I had already stopped taking the shots. Was having weird reactions lately. But, I'd like to hear your opinions about this aging thing and the halting of the MS progression.

I have never heard of this before.

This happens at what age?

[marti]

So far I'm getting the replies that I expected. I talked with my retired MS Doctor today and she wasn't in agreement either about the burnout thing. In fact, she said it might not be a "good" thing.

The current neuro showed me my actual MRI films and explained there are a lot more lesions than there were originally. She said that I am probably going to still have the same symptoms I have now, but she's hopeful it might just stop here. No way to really know.

I tried to research it too, but didn't find anything to document a possible "burnout" of MS. I think what my doctor was trying to say was that my body just wasn't handling the Copaxone anymore. She didn't mention Secondary MS, but maybe she just didn't want to scare me.

And yes, I have a lot of other problems that sure can be causing some of my pain. I am in the process of trying to sort it all out.

I just wanted to know if anyone had heard of this phenomenon. The neuro also said that my other problems are exaggerated by the MS or vice versa. She recommended a little exercise.

This is such a tricky, cruel disease we all have. No rhyme or reason. Thanks for the help.

[KatieAgain]

"The Burnout Theory" is an Urban Legend that I believe was started here at MSWorld. We use to have a gal here, who I just called "Numbers" when I was "KatieDidNot" who said she was a researcher and she just needed to make it to the age of about 65 and she could stop DMDs because MS burns out by then.

We could never get her to cite references. And it came up all the time.

She had so much knowledge...I actually believed her. And I was stupid enough to approach the subject with my then MS Specialist. She looked at me like my wheel was still spinning but the Hamster was dead!

Might slow down...but certainly not burn out. Would that not be a nice thought though?

[SNOOPY]

"The Burnout Theory" is an Urban Legend that I believe was started here at MSWorld.

No.
MS burning it's self out did not start on MSW or any MS forum nor is it an Urban Legend.

Neurologists have been discussing "MS burning out" with their patients for many, many years. As is the case with Marti:

marti
My neuro told me today that after so long MS kind of burns itself out and stays in a sort of holding pattern

At one of my early Neurology appointments after being diagnosed (1985) my Neurologist mentioned this topic to me. And this was long before there were MS forums.

Many times this topic is brought up on MS forums due to the patient's Neurologist mentioning the possibility of MS burning out.

[Justsayyes]

This idea was presented here on page 4
http://www.mscenter.org/images/stori...er09lowres.pdf

This is the Rocky Mountain MS Center summer 2009 newsletter. Not an urban legend, a legitimate opinion of Dr. Vollmer.

This article is valuable in so many ways, I'm going to print out all 12 pages of this newsletter so I don't misplace the info again.