Questions about Progression
 

So I talked to a friend the other day...she said her girlfriend, who's had MS for over 20 years, has stopped progressing. She has no new relapses.

Of course I googled this and didn't find any instances where progression stops-well a few cases but extremely rare. This information gave my DIL hope for me, but I personally feel maybe she is now SPMS...

Any opinions or info out there?

I think there is a difference between relapses and progression.

Unfortunately like you said the majority of us who start out as RRMS will end up with SPMS which as you have said doesn't include flares but does continue to progress.

Although you hear of the rare person who has had MS for 30 years etc. and is still able to walk with a cane or something I think this is very unlikely. :(

Yes, although I no longer have regular relapses/flares, in the
last 13 years, I have progressed some in disability, from
walking with a walker to using the scooter most of the time.

Although I chose to use the scooter at home, because I was
falling so much and no one here to help me up, I still didn't use
my walking so I lost the ability.:(

I do think that LDN has greatly slowed my progression, though.:)

She is most likely just progressing in an SPMS mode now.:(

Unfortunately I read up on progression of MS after my DIL told me this, and frankly I was startled by all I learned about progression. I haven't gone there because I was told my case was "mild". I don't think my neuro would use that term any longer, since more and more sxs keep cropping up and staying, inhibiting mobility inch by inch. Granted I still push through it and do exercise, clean, etc., but it is more difficult. DH bought a riding lawn mower so now I am officially retired from mowing the lawn-just got too darn fatigued and my legs hurt like he77 hours later from it. I used to love mowing...now I'm relieved that I'm retired;)

Progression is the dirty word all of us with RRMS don't like to hear or say, but I think realistically we have to be mindful of it as the years go by after dx. I was even more alarmed by the number of medical articles that stated that if a patient is dxd later in life (50s) it progresses more quickly. Great...

How long of a time period is she considering? A year? 5? 8?

It's possible to be stable for a very long time. At least 10 years for me, with no worsening or new symptoms. I do not expect that to last forever, but it certainly could. MS will do what it wants, and it isn't always bad.

Is this person on a DMD, or ever been on one? I took Avonex for 3 years, ended that in '03. Did that little bit help? Who knows.

Hope this friend of a friend stays stable forever!

She has had it since the late 80s-early 90s. I think she was on a DMD. She is in her mid-late 60s. That's all I know. I say prayers for her that her plateau stays with her.

Hi Debbie,

I saw my neuro yesterday for my yearly follow-up. I have transitioned to Secondary Progressive w/out Progression. I still have MS and I still have residual symptoms. I have not had a relapse in 11 years and there has not been any clinical evidence of progression, for several years.

From what I was told there are 10 percent of those with MS (using or not using a DMD) who do not progress. My neuro is putting me in that 10 percent. He said it is highly unlikely I will progress.

I have a very high respect for what this disease is capable of doing so for now I am very happy and thankful but I will cautiously "wait and see."

Snoopy, you and I seem to be in about the same, at least very similar, condition. My neuro insists I'm RR, while I believe I'm SP. The MRI last month says, I think:confused:, no black holes and no active lesions. I have no report for the previous MRI from '07 to compare.

What criteria does your neuro go by to determine your status?

Sparky,

I believe, if I understood correctly, it's based on the length of years diagnosed (28), not having a relapse for 11 years, no active lesions for a long time, lesions decreased in the c-spine and the brain MRI pretty much unchanged.

From what I know I have gone well beyond the time frame where most with MS would have already transitioned to SP. Yet, I don't seem to fit the RR part anymore with the absence of relapses (not complaining :)).

I had never before heard of being SP without progression but I will take it.

Let's call ourselves SMS (Secondary MS) and write a paper!

Here's hoping there's never any "P" to our MS. Cheers!