Not sure if I should take steroids again

[doublevision1]

I just got off the phone with the nurse from the MS clinic.  I told her about the new numbness which has insidiously crept all over the left side of my body in the past couple of weeks, from my shoulder down to my toes and everything in between.  Also having a bit of mild dizziness, nothing major.  She is contacting the on-call MS specialist to let him know, and expects he will order a 3-day course of IV steroids.  

If I wasn't already off work, these symptoms would have caused me to go off again.  I'm very uncomfortable; the numbness in my arm isn't really numb so much as burning.  The bottom of my foot feels strange, like I'm walking on marbles.  My skin on my left hand is super-sensitive and objects feel sharper than they really are, sometimes like razor blades.

Given that steroids should be used with caution, I'm wondering your opinion on whether I ought to proceed if the dr thinks I should; or push for them, if dr thinks I shouldn't.

I'm still managing to do the things around the house that I need to do, albeit somewhat more slowly.

I've only used steroids once before, a 5 day course of Solu-medrol, 6 months ago.  I had no negative side effects and they relieved my sensory symptoms pretty quick.

So...for those of you with personal experience with this:  what would you do?


db1

ps:   Relapses suck.

[nanadee]

Well, go for it & get some relief! I will pray you get some & can go on & move up on your Rebif. I take that myself. Hang in there, will be thinking of you!
Donnice

[doublevision1]

I have that sensation also.  I think it's just the other side of the same coin.  The nerves aren't conducting properly, resulting in abnormal sensations, whether these be hypersensitivity or the opposite, numbness.

Quix, anyone, please correct me if I'm wrong.

db1

[Want to feel well!!!]

What does it indicate when you do not feel the sharp object poking the skin?  Like a pin on your feet or hands?  

Wanna  

[doublevision1]

Sometimes I jump too when I touch something that feels like a razor blade!  Normal everyday items like the edge of a file folder, or a spatula, or the elastic on my underwear!  It is a quick, sharp jolt of pain.  And I know it's not anxiety, it's really sharp actual pain that makes me react.  I don't think it's odd at all that you jumped when she was poking you.  

The super-sensitivity of my skin is I guess just another variation of paresthesia.  Nerves not conducting properly.

I'm so sorry your symptoms are being dismissed like that.  I don't know what to say.  It is sad to think that it may have to get even worse in order to be offered the medical attention you obviously require.  I really hope you get some answers soon.

db1

[CtResident]

In reference to your above comment about things feeling super-sensitive and objects feeling sharper than they are:

At my appt. on Tuesday, the MS neuro was doing the poking with a long swab that she had snapped in half. So she'd show me that she was going to do the poke part with the sharp part, the dull part with the swab end. Then she told me to shut my eyes.There were some times when I really jumped. My dh said there were one or two spots where I missed the answer.

Then the dr. very nicely, yet disapprovingly told me that I was too anxious, and was too jumpy.Isn't that the purpose of this test? But that swab stick snapped in half was indeed sharp!!!

What is the significance of feeling super-sensitive?

Also, how long does an undx'd person have to wait for help, if sensory symptoms are lining up and getting worse? I am not unable to do things, but I am having to ask for more help lately.....meaning it's a slow progression downhill.

Thanks,
Suzanne

[doublevision1]

The nurse from the MS clinic just called me back and said the neuro on-call IS recommending the steroids.  So I'm gonna go for it,  3 days of Solu-medrol.

Hoping I tolerate them as well as last time and get some relief fast.

The neuro also thinks I should stay on 22mcg dose of Rebif a bit longer.  I was supposed to get to the full 44mcg dose next week, but they want me to hold off another couple of weeks till I get the steroid treatment and any possible effects of that over with.

Thank you for your replies and for the moral support!

db1

[nanadee]

Last July I had a horible relapse that I just could not bounce back from. My Dr had tried several "combo meds" did not work. As a last resort we did the 3 day IV steriod, on an out patient basis. I had no adverse reaction, seemed to help me more than any other things we had tried. Didn't have any of my mini flares for quite awhile after that either. I work & missed alot of work but was able to work this out to where we did it on the 3 days before a weekend, then had the weekend to rest. Went back to work that Monday, not going to say running at 100% but was atleast able to preform my smaller duties. I was scared , but had great nurses who all told me of great results of thier other patients that had done this & made me feel so much better. So , if you do this don't be afraid , they say this will last sometime as long as 6 months. Good Luck & keep us posted!
Will keep you in my prayers.
Donnice

[grannyhotwheels]

If I where you I would go for the steroids.  They helped me so much when I took them but for some dumb reason they screw up my electrolites and I can't take them.  If You don't have side effects from them, then I would say go for it.

I'll be praying,
Carol

[jensequitur]

It's all about quality of life, DB - if you're finding it hard to function, go for the steroids.

[Quixotic1]

Hi, It sounds like a major relapse to me.  If the MS doc recommends steroids, I'd say go with it.  Give the docs their best chance to intervene effectively.  In the absence of major side effects, no reason not to.

IMNTHO, Quix

[MCBCON]

Seeing as they do not seem to give side-effects then why not?  I react quite badly to setroids.  So, I will not do them again.