Had 1st round of steroids today - My hands feel a lot worse and now all of a sudden my eyes hurt really bad and are twitching like crazy . I have to be back tomorrow at 9:30am for antoher infusion and im scared if I dont go I am going to mess up the cycle that could potentially be helping me and maybe my eyes just hurt because they are getting better??? (supposedly i failed the VEP test but felt fine) --- Im scared if I keep going tomorrow that the symtoms will get worse and Ill lose my vision like so many with MS - I read about it and the only way that the symptons get worse from steroids is if its not MS and actually a bacterial inferction and the bacteria manifests on the steroids which make it worse. Im freaking out - I called the hospital and they said that I have to talk to the neurologist who wont be in until after my steroid infusion appointment --- any advice???? (sorry for typos - hands are real bad!) and THANK YOU SO MUCH.

Is the neurologist not on call tonight that you can call and speak to him or an associate?

In the morning call again and ask to speak to someone in change that can give you some answers, or don't accept the infusion until you get some answers from a qualified person on staff.

I hope someone here can give you some insight if they had similar issues.


Oh, does your medical ins have a 24 hr nurse line?
you could call and talk with them about what is happening symptoms wise.

how quickly did they run the infusion?

did you feel...puffy and swollen after the infusion? if your hands are feeling more numb, the extra fluid from the IV could be making you feel that way.

I was like that earlier this month. I drank extra water to make myself pee more to get rid of all the extra fluid from my IVSM

I asked the infusion nurse to run my IV slow, because I dont like the way it makes me feel if they do it over two hours. I didnt mind sitting there for four hours or more. I had tons of stuff to read, and an ipad to play with.

Hi Jodi,

Unfortunately, there are some nasty side effects to steroids. It is possible to feel worse before feeling better. Contact your Doctor for advice

When I had my long bout with ON many years ago, the neuro-opthalmologist I had at that time said that studies show that steroids do not hasten the remission of ON. He did not use steroids on his MS patients, and most of his patients were MS dx.
I know there must be a large disagreement on this. I wish it could be resolved.
I am glad I did not have steroids at that time. My eye problem did resolve. It came back when I was in bad "smoke" situations with forest fires, this year and last summer. It is getting better again.

Yep, the optic neuritis treatment trial. (OTNN)
Yep, there is disagreement about --it but I love your doctor!

i agree with all the above advice.
there has to be someone higher up at the infusion ctr to ask your Q's.
if you're not happy with the answers i would wait.

and i agree with trying to reach someone on call. also i'm wondering if your pharmacist might be able to answer some Q's.

I do not do steroids either....they only help to shorten symptoms (supposedly); but do nothing to slow down MS progression at all. Just my opinion, but they are not worth what they do to our bodies.

ONTT (oops)