NOT SURE WHAT'S GOING ON.....

[Waydwnsouth1]

Last Monday I started a 3 day course of IVSM due to my second flare in 5 months. The flare was DX after I had increased, steady leg pain also, numbness and tingling in my feet and let's not forget terrible balance with significant trouble walking. The walking and balance was so bad I spent a month in a wheelchair before I could see my Neuro.

After enduring the 3 days of IVSM and the problems that followed them nothing has changed. I'm still having significant trouble walking along with the balance problems. The numbness and tingling in my feet are still with me and now I have my feet feeling as if they were on fire.

I'm at a total loss. Did the IVSM not work or should I just give it more time to see what happens. What I do know for a fact is this is driving me crazy.

Does anyone have any thoughts on what may be going on? Could this be the first sign that I am progressing to SPMS? Any input would be greatly appreciated.

I had my follow up MRI today so I'm hoping that will help shed some light as what is going on.

[pennstater]

Sometimes steroids work right away, sometimes they take time, and other times, not at all. Steroids only help recovery occur faster, they won't change the outcome as to whether you partially or fully recover.

My understanding is that steroids are most effective when given early in a relapse. They may have been less effective since they were given one month plus into your relapse. Likewise, I thought steroids were least effective for sensory issues, like numbness and tingling. But I could be wrong.

Additionally, since you were sleep deprived, you can get "pseudo" symptoms that may resolve once you get back to "normal" again.

It is too soon to jump ahead and say secondary progressive. Just because symptoms don't remit, it doesn't mean progressive.

Take care. Hope you feel better.

[jreagan70]

Somewhere you got the wrong idea about what steroids do.

Research has shown that, in MS, steroids have no influence over the final outcome of a flare. The outcome is the same whether the flare is treated with steroids or not treated at all.

If your symptoms are going to improve, they're going to improve even if you hadn't taken the steroids. If your symptoms are not going to improve, the steroids will not make them get better and you took them for no other reason than hope. Your improvement, or lack of, is independent of steroids.

What steroids can do -- but don't always -- is shorten the length of the flare. But the window of opportunity is about two weeks. That window of opportunity closes at the two-week mark so often and so predictably that many doctors (mine is one of them) won't even prescribe steroids beyond the two-week mark. That's not an absolute, but improvement that comes after steroids are started beyond the two-week mark enters the realm of normal healing time, so it can't be absolutely said that the steroids were responsible.

The natural question arises that, what would be the hope of shortening a flare if it were already going for six or eight weeks? What then is the definition of "shortening"? How is a flare shortened if it were already going to start remitting at six or eight weeks?

You didn't start your steroids until well after the two-week mark, so the window of opportunity for shortening the length of the flare was already closed.

To be clear, the steroids already "worked" when they were in your body last week, suppressing whatever active inflammation there might have been at the four-week mark. They've already done their job and are gone. There's nothing more to wait for from them, nothing more that they can or are going to do. They don't work "later." The idea that steroids need time to "kick in" is a complete myth that doesn't seem to want to die.

It doesn't matter that your neurologist wanted you to call and report your results. She already knew, or certainly should have known, that the steroids weren't likely to shorten the length of your flare at that point and would have no influence over the final outcome. Perhaps she was just being encouraging or was hoping for the influence of the placebo effect, which is a proven phenomenon.

Your body is either going to heal or it's not. Whatever it does is going to happen in its own time. It may still be too early to know what the outcome of this flare will be. You could get a pleasant surprise in three or four more weeks. But whatever amount of recovery you do or don't get, the steroids have nothing to do with it.

And since you asked, no, this isn't the first sign that you're progressing to SPMS. If you go back and read your own posts here at MSWorld, you'll see that you've described your symptoms as becoming progressively worse since you starting posting, even when you weren't having relapses. Progressing suggests secondary progressive.

The fact that you're having relapses doesn't mean you haven't entered SPMS. SPMS can have active phases and some recovery, so its possible for you to have entered SPMS and be in an active phase of relapses.

The other thing about steroids is that they don't do anything to slow progression of MS. So unless you're willing to take them within the first week or so of a flare with the understanding that you're going to be taking them only for the chance that they might shorten the length of the flare -- and that they have no effect on outcome or progression -- you might want to consider them. But after two weeks, there's really no point in taking them, and they're actually contributing to harm for no benefit.

It's a shame you didn't learn all of this years ago.

[KatieAgain]

Give it some time. With or without the steroids, things will eventually slow back down.

Try to minimize the stress.

SPMS? Does not sound like it to me...just some really bad flares. Aggressive...certainly. rose:

[Waydwnsouth1]

PennStater, jreagon70 and KatieAgain

Thank you all for your replies.
PennStater...fortunately my sleep patterns have returned to normal so I'm not fighting that any longer.

Jreagon70...thank you for the words of knowledge. I will admit I am not as knowledgeable about steroids as I would like to be. I will definitely take a different approach to their use from here on out. Had I known last week what I know right now I would not have taken them. Hopefully things will settle down in the coming weeks and I will return to normal, well as normal as normal can be. But you get he picture.

KatieAgain.....thank you for the encouragement. As wel learned about this disease as one thinks they are there is always that curve ball that gets thrown. As things begin to settle down I guess I will have a better feeling of what I will be left with from this flare. For now I will continue to just live my life and accept what happens. It is what is, as I always say.

Again thanks to you all. I learned a lot from your posts.