PPMS and steroids

My wife has PPMS and in August 2018 had a spell in hospital and was diagnosed with ulcerative colitis as part of her treatment she was given steroids.

These made a vast improvement in her condition no more spasms or nerve ending pain she felt so much better all round and was able to stand with help which she had not been able to do for the last two years plus lots of other small things but the most important was she was without pain 24/7

During all this time she did not take any of her regular medication there was no need.

When the course finished the pain, spasms etc returned so we contacted both our doctor and the MS nurse to see if we could get steroids but in both cases met with a firm no.

Has anyone had similar​ experience or are you on steroids and if so which ones and how often? I’m trying to gather information so that I can go prepared the next time we see the consultant this time in June and will ask him.

Any help would be greatly appreciated.

I took a course of steroids in October and like your wife had a huge improvement and free of pain while in my system. I understand that I can only have a further dose after 4 months and will certainly request them again…

This is one of the reasons I’ve never been 100% convinced that I’m PPMS, as whilst the steroids don’t fix everything, they made some significant improvements for me.

I discussed this with neuro again recently and he didn’t argue when I told him about an episode I’d had many years before diagnosis (likely optic neuritis) and my thoughts that I maybe had very mild RRMS and things took a tilt when it turned to SPMS.

I was being investigated by gastroenterology for a couple of years before MS blipped any radars. I understand I was one tick box away from a Crohns diagnosis. The high dose steroids given to me by neuro when I was told I ‘likely’ MS, stopped frequency/urgency in it’s tracks. Both neuro and gastro said no, bowel issues were not MS related.

So after a Capsule Endoscopy (Crohns indicated again), more time, bloods, a 2nd course of steroids when problems resurfaced (steroids fixed again) and finally another another colonoscopy that revealed all perfectly normal and healthy.

I don’t think it’s always crystal clear, in every case. If the steroids help symptoms then take advantage of it

Sonia x