Does MS burn itself out?

[KatieAgain]

I am so sorry....OK...please forget the Urban Legend stuff. It's true.

Sorry Marti. I was wrong. I sure hope mine burns out very soon.

[Tawanda]

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.

I think the key word "opinion". I think MS burning out is false, and if it did burn out, it wasn't MS in the first place! There's only 2 facts about MS that I know to be true: (1) it is chronic and (2) it is progressive. Anything else is open to debate, and luckily we have the MSW forum where we can do that, and hopefully agree to disagree sometimes !

[SNOOPY]

I think the key word "opinion". I think MS burning out is ***, and if it did burn out, it wasn't MS in the first place! There's only 2 facts about MS that I know to be true: (1) it is chronic and (2) it is progressive. Anything else is open to debate, and luckily we have the MSW forum where we can do that, and hopefully agree to disagree sometimes !

From the article Justsayyes linked to:

When we

look at patients as they go through the

life-stages of MS, the majority of them

seem to have an inflammatory process

that is very brisk at first, and then it

decreases over time until, for reasons

we don’t understand, it generally shuts

off when patients reach their late 50s or

early 60s .

As with anything about MS there is no guarantee everyone with this disease will experience what is referred to as "burning out."

Dr. Vollmer admits they do not know why it happens but for some with MS, it does.

Only time will tell if my MS has decided to "shut off" or "burn out." I have patience and plenty of time to see if that is what I am experiencing (the rest of my life). Life is an adventure

[marti]

Well at least I now know that some of you have heard about this theory. I agree that it is probably just someone's opinion, not necessarily based in fact. Maybe wishful thinking on someone's part.

My retired MS doc also has MS herself. She was always my very best source for information and answers. She remains the best and still talks with me on the phone and listens and tries to answer questions. She had a lot of major surgery on her back and neck to try to correct problems that were, in part, caused by her MS. She was very skeptical about this whole issue. In fact, I can remember her telling me (a long time ago) that some patients stop responding to the DMDs and are released from taking them. No age limit was mentioned.

It's always so interesting to hear what you all have read and learned over the years. Thanks so much.

My current neuro thought I had Progressive Relapsing MS at one time. Then she kind of let that go and just went with RRMS. Guess it doesn't matter since I REALLY didn't want to take the shots anymore anyway. But I was kind of surprised she didn't try to push any of the new meds on me. I just need to ask her more questions about what all this means for my individual case. She probably doesn't know.

[dyin_myelin]

There is undeniably a puzzling and extremely small subgroup of people whose MS has progressed past RRMS to what should be SPMS but who seem clinically stable; in fact are still walking around. Joan Didion has had RRMS for forty years with flares, L'hermites, and assorted/familiar sensory issues, I would be very surprised if Snoopy and JD have been living with a misdiagnosis for close to half a century. They probably have had scores of diagnostics and specialist visits by now.

[SNOOPY]

Hi dyin_myelin,

I would be very surprised if Snoopy and JD have been living with a misdiagnosis for close to half a century. They probably have had scores of diagnostics and specialist visits by now.

I misdiagnosis of what? RR vs SP? Or a misdiagnosis of MS?

As of last year I have been officially put into the SP category the caveat is "without" progression. There is more to this disease than the basic "categories" listed for MS. My "type" of MS is a 10% category.

[Tawanda]

There is undeniably a puzzling and extremely small subgroup of people whose MS has progressed past RRMS to what should be SPMS but who seem clinically stable; in fact are still walking around. Joan Didion has had RRMS for forty years with flares, L'hermites, and assorted/familiar sensory issues, I would be very surprised if Snoopy and JD have been living with a misdiagnosis for close to half a century. They probably have had scores of diagnostics and specialist visits by now.

Don't get me wrong. I was having MS symptoms for at least ten years before I decided to investigate what was wrong. Plus I am aging rapidly and getting very close to the point where if MS is supposed to burn out if it does burn out. I am Pro-MS burnout and follow these threads very closely!

[fishead]

I am so sorry....OK...please forget the Urban Legend stuff. It's true.

Sorry Marti. I was wrong. I sure hope mine burns out very soon.

KatieAgain,

I actually asked my neuro about this when I had heard it mentioned here on MSWorld. She said "no supportive scientific data has been collected supporting the hypothesis that MS burns itself out"

So just KNOW that you are not the only one who believes it may be an Urban Myth.

[Justsayyes]

As is stated in the Rocky Mountain newsletter I linked to...Dr. Vollmer is recognized as one of the world's leading experts in MS.

If he has an opinion about MS, I'm going to at least respect it.

[KatieAgain]

KatieAgain,

I actually asked my neuro about this when I had heard it mentioned here on MSWorld. She said "no supportive scientific data has been collected supporting the hypothesis that MS burns itself out"

So just KNOW that you are not the only one who believes it may be an Urban Myth.

Thank you Fishead.

[HobbitHead]

From what my doctor told me, the thought is that the immune system becomes weaker as we age, and thus MS may "burn out" in some patients.

I guess it all depends on how adamant your body is about attacking itself. *sigh*

[golfore]

The brain and spinal cord are so extremely complicated that is has to be impossible, at this time, to be specific about all the nuances of a disease like MS.

All the theories about MS, and how it affects all the different people who are diagnosed with it, make it nearly impossible to talk about it in absolute terms.

None of us have the same problems.

[Tawanda]

I am so sorry....OK...please forget the Urban Legend stuff. It's true.

Sorry Marti. I was wrong. I sure hope mine burns out very soon.

LOL! I want the same thing! Who wouldn't want "MS Burnout" to be an absolute fact? Sadly, wanting it just doesn't make it happen!

[Tawanda]

The brain and spinal cord are so extremely complicated that is has to be impossible, at this time, to be specific about all the nuances of a disease like MS.

All the theories about MS, and how it affects all the different people who are diagnosed with it, make it nearly impossible to talk about it in absolute terms.

None of us have the same problems.

You could cut and paste this to every controversial post (oh but what fun would that be?)!

[golfore]

Tawanda,,,,, Agreed!!!!