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Have IV Steroids Helped Me or Not??

Hi everyone,

Please excuse what is probably a daft question…in limbo awaiting Neurology appt in October having been in hospital in July with bladder retention, weakness and partial loss of use of right leg and other less acute symptoms.

Was given IV Steroids for 3 days and after this I could use right leg again and started to wee ok-ish.

How do I know if steroids have worked to reduce inflammation on spinal cord?? Whilst they seem to have improved those symptoms, I have lots of new ones (and old ones) that have occurred since, and am confused.

Does this mean they worked, or they didn’t??

Have 2 spinal cord lesions and olicogonal bands in CSF.

Most of the ‘new’ symptoms are on my LEFT leg and foot, except for a return of tingling/odd sensations in my right arm and hand which I initially had a year ago but had gone away by February.

So is this the same lesion playing up ? Does a lesion cause nerves to become progressively damaged even once inflammation damped down therefore causing new symptoms from same lesion?

Confused to be honest!! Will be glad when next appt comes

hi minnie

steroids speed up the relapse so it shouldn’t last as long.

the fact that you have new symptoms rather suggests that you’re still in relapse.

your questions about old and new lesions are way beyond my pay grade.

sit tight and wait for your appointment.

try to relax and not get stressed (easier said than done, i know)

wishing you well

carole x

Hi Minnie

As Carole said, steroids are supposed to speed up remission from a relapse, or put another way, to reduce the inflammation that’s caused the relapse.

They aren’t a cure, nor are they reliable blighters. They may work on one relapse, but not on the next.

So you can have partial remission from a relapse or complete remission, either with or without steroids. The trouble is that your relapse was a ‘biggie’ so it’s entirely likely that the steroids have done some good but not completely remitted all the symptoms.

Your new symptoms could be an extension of the original relapse, or a new relapse entirely.

If you think about it in terms of inflammation rather than lesions, new areas of inflammation could be causing old or new symptoms to flare up.

You have had a very nasty introduction to the world of MS. And it sounds like it’s still causing trouble.

Roll on your next neurologists appointment. At least then you should get a clearer idea about the future (as if we ever ‘know’ what’s going to come next!). In terms of DMDs at least.

Sue

I have no medical knowledge beyond the contents of the RRMS users’ manual.

As I understand it, steroids will tend speed up the process of reaching the end point of recovery after relapse, but they will not change the end point in terms of what, if any, residual damage you are left with, when the inflammation has subsided.

Old lesions certainly can play up temporarily when a person gets overheated through hot weather or infection, highlighting old areas of damage that normally cause no trouble, but without any new inflammatory process being obviously at work.

I don’t know for sure whether a new spell of acute disease activity can point up old areas of damage in a similar way, but would not be at all surprised to hear it.

Alison

alison

thanks for reiterating what i already knew.

my symptoms have been going mental so i bought some testing kit from amazon - lo and behold i have a UTI.

on anti-biotics at the moment.

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Thanks ladies for your comments, I know I just need to wait for my appointment but it’s so frustrating!

I was ‘lucky’ in that I was given my MRI results within 24 hours in hospital and had LP and started IV steroids the next day, also saw the consultant neuro and effectively jumped the queue onto his list as had previously been waiting for appt with another neuro at another hospital since last year.

So things are actually moving along pretty quickly In his letter giving me the LP result, he signs off by saying he will see me in October to decide whether further treatment is necessary.

Which seems an odd statement.

I don’t really understand how anyone knows what is continuation of a relapse, and what is a new one!! Not sure how even the neuros work it out really…

My functionality has definitely improved since steroids thank goodness, just mostly sensory symptoms at the mo, so amgrateful for that, whatever the cause!

Minnie x

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minnie

to answer your question as to how any of us know what is new relapse or an extension of the original one, it’s because of what we were told when in your circumstances.

i have been told that it’s a pseudo relapse because it started with a UTI.

been told that it’s the original relapse if it was soon after i reported the previous one.

to be honest i don’t have a clue.

it’s that feeling of doom accompanied by strange happenings in my arms, legs and all in between.

anyway it’s not looking doom and gloom for you now.

by further treatment i’m supposing that your neuro means a DMD.

carole x

Hi Minnie

I would expect that the neurologist wants to see what kind of remission you got from the relapse. It’s an excellent sign that the functional/motor symptoms are better. I imagine the neurologist will be able to figure out from this that you have relapsing remitting MS, and will be able to prescribe disease modifying drugs. These are taken to reduce the number and severity of relapses. They aren’t a cure and won’t help with the symptoms you still have.

It’s worth having some familiarity with the various DMDs that could be proposed, you’re likely to be offered a few drugs to choose between, so don’t expect a completely free choice. It will depend on how ‘active’ your MS is plus what prescribing centres have been set up in your local hospital.

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

Sue