Interesting study - not new- rates of develping SPMS from RRMS

[OrangeMetal]

http://blog.nationalmssociety.org/20...essive-ms.html

This article was before I started visiting this board.

It says after you hit about 45 your chances of developing progressive ms continue to decline, from 30some percent to lower and lower.

Thoughts on this?

[Seasha]

OrangeMetal - I think you meant to write SPMS instead of PPMS in your title. The article mentions progressive but in the case of Secondary progressive (SPMS) not Primary progressive (PPMS)

I can edit your title if you'd like

[OrangeMetal]

Sorry, I should have put SPMS, not PPMS.

[OrangeMetal]

Seasha,
Yes, please, sorry, please edit the title. I just wrote a correction but it was too late. I think a correction is needed. Thank you for doing that.

[Seasha]

You're welcome

[Jules A]

I can only pray the data she presented is correct.

[onlyairfare]

This situation is where my neuro thinks I am - "burnt out" RRMS, "benign" and unlikely to progress.

I am 63, diagnosed RRMS in 1975 at age 24, and considered "benign" because I am not significantly disabled after nearly 40 years. I recently had a relapse (my first in about 10 years) and recovered promptly and completely to my baseline. One of my friends said "In a way, the relapse is good news because it proves I am still RRMS." He has a good point, and I exemplify the point of the NMSS article that pertains to some MS patients.

I shall remain dedicated to my daily Copaxone for this reason.

[Mamabug]

That article is REALLY good news. I am 52, got MS at age 39, and used to assume that I'd be in a W/C by 65.

I asked my MS specialist that question a couple of years ago, and she talked about the MS burning out possibility. But those statistics are very encouraging.

Thanks so much for posting.

~ Faith

[dyin_myelin]

This situation is where my neuro thinks I am - "burnt out" RRMS, "benign" and unlikely to progress.

You said you have left leg weakness, correct? What other sx do you have? Thanks.

[onlyairfare]

Actually it's right leg weakness, but yes, I do have leg weakness which becomes more obvious if I have to walk long distances, especially on uneven terrain, or in hot weather. That problem came on in 2002 and it was my first MS relapse that did not remit to completely normal. I don't hike any more, and under optimum circumstances I can walk almost a mile - therefore, "no disability."

I used to have optic neuritis frequently, say 1 - 2 times per year, but haven't had ON in many years (knock on wood, touch red), so that is one thing that has burnt out.

I have some neurological bladder issues, leading to frequent UTI's, which are managed well with "lifestyle changes," so they are not disabling.

I am very heat sensitive and have significant fatigue, so I stay inside if the weather is hot, don't go in the hot tub, and I take Provigil daily with good results controlling the fatigue. So, no "disability" there either.

The definition of "benign MS," according to my neuro, is 15 years of diagnosed MS and an EDSS score of less than 2 (I think those are the numbers but I am not sure), so given that plus my age, it seems I am unlikely to progress. No guarantees of course.

I wish my leg and bladder were fine; I wish I could enjoy a nice warm beach; I wish I were more energetic. But given how I felt when I was first diagnosed at age 24(scared, depressed, angry, crushed), I am just very grateful to be where I am.

[pshrink]

Dont't rely on averages

Well, OrangeMetal, some people have really long remissions and some have lots of them in a short time. some are bad and some are mild. Some people go for many years before becoming SPMS, and some go quite fast.

I went from a Dx of Transverse Myelitis in Sept 2007, to RRMS in December of 2008 to SPMS last month (but probably several months before that - but I'm 76. You can figure from that, that the averages don't fit me, (or the other way round!).

If I trusted the averages, I was dead twice before the onset. I know that because I was there at the time.

All you can rely on is the way you are right now. If there is stuff you want to do, and still can, do it now. Next year, even next month may be too late - but you could be doing it in ten years time.

[Jules A]

I wish my leg and bladder were fine; I wish I could enjoy a nice warm beach; I wish I were more energetic. But given how I felt when I was first diagnosed at age 24(scared, depressed, angry, crushed), I am just very grateful to be where I am.

I always appreciate your great attitude but also that you don't minimize things. Your story gives me some hope.

Thank you once again for sharing your experience in an honest and realistic manner.

[onlyairfare]

You're welcome JulesA.

When I was first diagnosed most people had never heard of MS, and if they had, it was because they saw a big billboard showing a young person in a wheelchair, captioned by the headline "MS - The Crippler of Young Adults!" I thought that was my inevitable future, and it would likely happen pretty soon.

It's important for everyone to know that a "benign course" is possible with MS; one can adjust to modest limitations; and some people do amazing things despite significant limitations.

[dyin_myelin]

When I was first diagnosed most people had never heard of MS, and if they had, it was because they saw a big billboard showing a young person in a wheelchair, captioned by the headline "MS - The Crippler of Young Adults!"

. . .? Well, glad that wasn't outside my bedroom window right before I got diagnosed.

[Mable]

All you can rely on is the way you are right now. If there is stuff you want to do, and still can, do it now. Next year, even next month may be too late - but you could be doing it in ten years time.

That right there is the existential and spiritual challenge. If there's anything our souls have to learn from this disease, it is how to live with that simple and profoundly difficult truth.