How long do you wait?

I'm not sure I understand this: have all of your relapses been optic neuritis?  I'm a real wimp about my eyes..if there's something not right there, I'm calling the doctor.  And I think optic neuritis is the one major symptom that steroids can actually help.

Otherwise -- when I was having relapses, I'd only call the doctor if the relapse caused me to not be able to "perform activities of daily living" - -I couldn't stand, feed myself, dress myself, toilet myself, bathe myself...that sort of thing.  Otherwise, I'd just wait and see, and generally they'd pass.  I would note, however, when I had a relapse, and what was happening, and the next time I was in front of the doctor, would tell him.

There's never any chance that you'll recover 100%, with or without treatment. The best the steroids can offer is a shortening of the relapse, but that isn't even a promise: some folks do well with steroids, some folks do well on occasion with steriods but the next time do poorly; some folks do poorly on the steriods all the time.  And their long-term side effects are really serious, and well worth considering.  So if the only reason you'd call your doctor is to go on steriods, you might want to consider that, too.

I'm sorry you're having so many relapses, though.  I see you're on Copaxone.  I hope you start to see fewer exacerbations, soon!

Buckeye said...
Thanks for your advice.
My relapses have been mostly weakness, gate or have shown up in MRI's. The last time I got ON it was when I was dx in 05.
I haven't been on Copaxone that long. I need to wait and give it it's full 6 months to decide on if its working or not.

Rhondab
While its frustrating to experience this, it doesn't get me down. I stay as normal as I can for as long as I can. This is my life now and there are only two choices (1) Be miserable and bring everyone down with me or (2) Except it, move on because in between the injections and IV's and MRI's life is still great.

and so you'll feel weak, or unsteady, or your gait will be off, or whatever symptoms you had during your last flare, or exacerbation, will show up again.  That doesn't necessary "count" as a NEW flare...just residual symptoms, stuff that will always be with you.

Once the nervous system is sufficiently damaged - -which can happen, over time, or with a particularly nasty exacerbation -- the damage remains.  Much like a scar on your hand -- the wound may heal, but the scar remains, and you might have impaired use of your hand. You can't say that your hand is still "injured" -- just that the scar impedes your use of your hand.

I hope that makes some sense.  Too early in the morning....I need another cup of coffee..  :)

   Just wanted to say good job on doing each and every one of your Copaxone injections! woohoo!  Hopefully in time you will start to see a reduction in those relapses you are having.  Keep up the good work, and I hope your current flare resolves itself soon.  Best wishes.

Kimber