RRMS to SPMS how did you get there?
 

I have been dx as RRMS since 06. Lately I have been having flair after flair, and I am not reaching full recovery between flairs. its been a wild ride! Im tired, and a bit worried.

They are talking about advancing my dx from RRMS to SPMS. What does this really mean? What will it mean for the course of my disease, or treatments? Has anyone here done this?

What advice, or information can you share with me? Im freaked out! :eek: I go tomorrow to the big girl hospital and they are going to "talk to me" and try to convince me to get on the "steroid train" EEEK! :eek:

Calm down, if it is the case, freaking will not help the matter one bit.

I graduated to SP a few years ago. I don't have exacerbations anymore and frankly, it's a relief. Mine were colossal whoppers lasting many, many months at a time.

After 13 years, I went off the shots completely in July '07, don't miss 'em.

Now and then I have a spurt of extra-sluggish days, painful nights, or cognitive fallout and I go for an IVSM which still helps me a lot.

You've seen that I've managed to keep going, albeit at a much slower pace, but go I do.

Definitely do not freak out :winky: It never helps.

I've wondered about that as well. I have had constant pain in my hands for over a year. Steroids don't touch it, but Lyrica helps. What does it mean when a sx doesn't go away? Does it mean I am advancing to SPMS? And what does that mean?

I thought it would be bad news to be "upgraded" to SPMS, but it seems it doesn't really change anything. You still go through the same meds, continuous sx. It just means some symptoms don't go away. I have sx that never seem to resolve.

I'd be interested to know if anything changed for anyone when their dx changed from RRMS to SPMS.

I'm wondering the same thing, Dej.

I honestly don't think my Neuro knows, either. I've asked him before and he always dances around the answer.

My sx change so much. Some days are better than others. I try not to think on it too much. Because it is what it is......regardless of what it's called. :rolleyes:

You see my story on your other thread. :)

IVSM is meant to stop inflamation and thus end your flare, before any or much permanent nerve damage is done and supposedly There are no inflamations/flares with SPMS

So, with the exception of RPMS-remittive progressive MS, where you still have inflamation, IVSM does little more than a placibo.

If you and your Doc think you are having inflamation, then try ivsm, it may work for you and I hope it does. :hug:

I dunno, I was dx'd in oct of 2008... and the darn flair never remitted. So I am no longer RRMS but the doc can't tell me if it is SPMS or PPMS. I am expecting the latter seeing as every single MRI (all 17 of them) have shown new lesions. But, she doesn't want to speak of PPMS because it would mean my insurance will not cover any of the drugs that she is using to try to slow the progression.

I agree, don't freak out. The good news is you wont have as many flairs and crap like that. The bad news is you begin steroids and the slow decline and whatever else the experts like to say (being sarcastic here). :rolleyes: Everyone is different so don't panic. No two are alike and no two ever will be.

I am sorry it's happening to you but really I think you'll appreciate not having flair after flair so close together. I know Jim did and many others too.

To answer your question Jim was dx'd rrms the first five years. Because of his progression and constant flairs with no improvement they up'd him to spms. Somewhere in between the experts (more sarcasm) even said he had ppms, rare form, chronic progressive ms, blah blah blah. It seemed no one could agree. But, and I think I mentioned this before, we finally told them to put a name to it and stick to it. They did and now say spms. :D

It's just a classification really, something they use to gauge your progress or lack of, I guess. Either way :hug: to you. I am sure nothing we say will make you feel better because it's happening to YOU. Jim may be in a wheelchair but not everyone goes in a chair. We try to live life to it's fullest regardless of the changes and obstacles. :hug:

My neuro was reluctant to go ahead with documenting SP over RR because, as Legz mentioned, coverage changes on meds and the docs want us to have access to all options as they come down the pike.

What was happening with me was that I hadn't had a full-blown attack in five+ years but was getting new lesions every year (on shots) and steadily & obviously progressing. After a few years of the same, she finally said I could quit the shots and a year later, she changed my label.

Sal, I beg to differ (PALLEEEEEEEZZZZZEEEEEE!!!!!!! let me differ!!!), IVSM still helps me when I feel like I've been run over by 11+ military tanks instead of 10. A three or four day course gives me enough of a lift in energy and coordination, it really helps me out of that quagmire. Since SP, the most I've had is two 3-day courses in the same 12-month period.

OK OK, ya little brat, I'll let ya have yer IVSM fix. It means that you are having inflamation, so, maybe you haven't had the full SPMS transformation.

Huggy poo..:hug:

Not to make a fuss but Jim took steroids way into his spms too. I have always understood that ms is an inflammatory disease. I recently read a study that suggested inflammation in secondary progressive multiple sclerosis is higher than in rrms. Then I read a study suggesting that while inflamation is more promanant in rrms that it can still become active in later stages. Who the heck really knows. :p

To be honest I stopped reading studies and such unless it is about spms or ppms which we all know are few and far between.

The doctors stopped giving Jim IVSM after kidney failure but more recently brought it up again for his fatigue and leg pain to see if it helps. Hmmm.

Ack, it's all irrelevant in the long run since everyone reacts differently anyway. Jim's botox doctor told him medical mj is probably a euphoric response rather than a physical response. He disagreed and started to take it personal. I spoke up and said "So what? If it works for him euphorically or not it works, right?" She agreed and didn't say anymore. :D

Damn disease and it's experts. :rolleyes:

See how confusing it all is Dej?