When do you know?

[pjsSissy70]

I guess this could be just a general question, but when do you know when you've stopped being rrms and joined the spms group? I never really have had it explained where I understand it.

[sich59]

I'm PPMS so I'm not an authority, but I suspect it is when after you've had a flare your aren't feeling "normal" anymore. You have lingering symptoms and that becomes your new normal. And it keeps getting worse with each subsequent flare/episode

[dougl]

I guess this could be just a general question, but when do you know when you've stopped being rrms and joined the spms group? I never really have had it explained where I understand it.

as my partner explained it to me, she knew she was going to SPMS when things stopped getting better after a relapse.

she described it as going from the up/down of RRMS to the steady down of SPMS.

hope that helps.

[pjsSissy70]

I had 2 huge flares, one in October and then another in December. Im not back to where I was before the flares. I am using a walker full time and cant drive anymore and the memory problems are driving me nuts. My neuro hasn't said anything about progressing to spms, but then again I havent asked either.

[mgoerke]

I suspect that I am in this group but no dr will say the words.

Looking back I had my first attack at 26, but it went unexplained. MS hug so bad I could hardly breathe for about six weeks. It just went away over time.

Next "attack" I now realize happened at 36 after I have birth. My left leg would just randomly disappear. It would go numb and collapse like it didn't exist. I had all kinds of stiffness and pain that was explained away as herniated disks. Slowly over about 9-12 months it resolved.

At 42 I finally had the attack that would not clear up on its own. Went numb completely below the waist. The a few months later, another attack and it kept happening. I never fully recovered for each attack and with each one the perm disabilities increased.

I've been on Ty for 17months, and while I have not had any new attacks and MRIs are stable, I can feel the numbness, weakness and cog fog creeping along.

So regardless of what I am labeled, I've got MS that just keeps giving :-)

Hugs to everyone out there that doesn't recover and to those who do.

[dalechilders51]

My experience was similar to Mellisa's. I was on Avonex and still having flares on a regular basis. My progression was getting worse to the point I ended in a wheel chair. I am now on Tysabri for 6 years and have stabilized. There wasn't an event, it was just a slow transition. Take care of your self. Dale

[Karenkay]

Yep ... slow transition for me too. I was diagnosed in 1989. I've had a couple major attacks and a bunch of minor attacks over the years but I always recovered from them. About 3 yrs ago my left leg started to lose strength. I'm using walking aids now.

Dr told me couple months ago that he felt I had moved from rrms to spms. No major attacks ... just issues that I am not recovering from ... does that make sense??

[Seasha]

Yep ... slow transition for me too. I was diagnosed in 1989. I've had a couple major attacks and a bunch of minor attacks over the years but I always recovered from them. About 3 yrs ago my left leg started to lose strength. I'm using walking aids now.

Dr told me couple months ago that he felt I had moved from rrms to spms. No major attacks ... just issues that I am not recovering from ... does that make sense??

Karen - I could have written your post! Many similarities with a few changes. First flare in '89, but not dx until '99 with RR. Dr. told me about 3 yrs ago I had moved to SP as I wasn't recovering from damages done. It has all been a slow and steady downward transition here too with no flares in years now. Using different types of walking aids now and thankful I can still walk!