[MSbelle]

I have never gone in for steroids since having been dx with MS. I have never had optic neuritis but I have had some relapses that have made me wonder if I should have (but I never ended up doing so).

I did a re-trial of Ampyra starting yesterday and, just like when I tried it before, now I'm having problems. Before after 10 days of it, my walking deteriorated greatly. Now, worse... I have this burning sensation in my legs that is just debilitating. It's in my glutes, my hips, thighs, ankles, feet... so brutal. It's 2:13am right now and I'm NOT a night owl but I had to get up to come and put ice on my legs for some relief (which doesn't help really).

I have spinal lesions that are the reason for my leg problems and I'm wondering if they're inflamed, and if so, if steroids would help. I was hopeful it was just the Ampyra and I'll continue to be hopeful, but if it's from my lesions then I would like some relief. Should I go in?? And if you think I should, how on Earth do you do that? Just go to emerg? Honestly I've never been told what to do in case of a relapse that requires attention.

[Erin524]

Call your doctor. Explain your symptoms. You can try telling them how bad it is. It's impacting your daily life, or something like that. That's what I usually try with my neuro. He never gives me the steroids tho. Pretty much the only thing that gets me a steroid Rx is a vision problem, and then it's IV steroids (oral steroids are contraindicated for vision problems. Might make things worse)

Hopefully your neuro is more sympathetic than mine is. They might say it's a reaction to the medication. Maybe there's a few days that they'll make you wait to see if the problems level off, or go away?

[Snoopy]

Hi MSbelle,

Steroids are used for exacerbations, but not all exacerbations require steroids. Steroids may shorten an exacerbation. Steroids will not change the course of the disease.

The more steroids are used the less effective they can become.

The guidelines for an exacerbation: Old and/or new symptoms lasting, continuously, for more than 24 hours. This should be separated from a previous exacerbation by 30 days.

These are Guidelines and your Neurologist is the best person to determine if you are having an exacerbation.

Steroids are not used for symptom management.

The downside to steroids: there are short term as well as long term side effects.

Long term side effects:

Steroids induced cataracts, diabetes, Cushing's disease, and osteoporosis.

Information on steroids:
http://www.webmd.com/multiple-sclero...ng-iv-steroids

I have spinal lesions that are the reason for my leg problems

I understand. I have mostly c-spine lesions and my mobility has always been my main struggle. Exercise has been the most beneficial for me. I have worked with a Physical Therapist 3 different times.

Take care.

[NurseNancy]

whether you need steroids or not it's time to see your neuro.
please call first thing in the am to get an appt.

explain just what you've told us. the above advice is all great.
let us know how you are.

[Debbie D]

I agree with all the previous posts. Steroids are used sparingly in my case--my neuro knows how the long-term effects can hurt you, and he also knows how other things can cause an exacerbation of sxs, including infections, heat and stress.

I would also agree with the suggestion to call your neuro to let the office know what is going on...

Keep us up to date!!

[MSbelle]

Thank you all. Well I figured out what happened. It's the zanaflex! Might have been the Ampyra too but I came off both and have been fine. Tried zanaflex before bed last night and had burning legs again. No more of that for me.

The quest for a drug to help with my ridiculously spastic legs continues. The only good night sleep I've had in ages was the one night I took 1/2 a tablet of Ativan. Going to call my dr today and talk to her about that.