New MS Diagnosis

Hi all,

I’ve just registered here and will probably have a bucket of questions but for now, well, I’ve recently been diagnosed with MS. It all started with a grey smudge in the vision of my right eye, after a barrage of eye tests the Opthalmologist set me up with an MRI, this found lesions on the brain which rose to my diagnosis of MS.
Next step is a steroid course to try to get my sight as near as it was as possible. I will say at this point I reside outside the UK, in South East Asia, Covid vaccination has been a lot slower than the UK and just as I was about to make an appointment for the steroids I was told I was up for my first jab. My doctor and I agreed the steroids will be held off until the three week period after my second jab… So that’s where I am at present. Three weeks are up next week…
So my first question, steroids, I hear this course will make me very sick due to the huge drop in my immune system during the course. Is this the only or best way to get my sight to return close to as it was? I have heard that oral steroids will do the same thing albeit slower but not make me sick. Any information you can share would be gratefully accepted.

Thanks to all
Chris.

Steroids won’t make you sick unless you are awfully unlucky. Short courses of high-dose steroids might make you insomniac and a bit hyper while you’re on them, and have you talking a bit faster than usual and be filled with a slightly hectic sort of high energy. My advice is, if you have any boring household tasks that you’ve been putting off for months, save them up for those three steroid days - you’ll get them done super-fast. Or that has been my experience of several 3-days blasts of IV steroids over the eyars. What I would say is: if htey give you oral drugs instead of IV, ask about a prophylactic PPI like omeprazole or something to protect your stomach: the oral meds can cause gastritis, and you don’t want that.

You are right that steroids will temporarily make you more susceptible to infection, and maybe that’s where you’ve got the idea that they’ll make you sick: for sure if you are exposed to infective agents, the steroids might make you more vulnerable to falling ill because of that, but they shouldn’t make you sick on their own account. Please ask your doctor about what steps you should take when on steroids and afterwards to protect yourself from external infective agents.

Look, no one likes taking steroids: they are very powerful drugs and in rare cases they can cause problems. But there’s nothing like them for damping down inflammation in a hurry, and sometimes nothing else will do. Good luck.

Hi Alison100
Thank you for the reply, you’ve put my mind at rest ref the steroid course. I probably got it wrong when the doctor was explaining the problems that could occur with the drop in my immune system. After all I’d just been dropped with the MS diagnosis bomb, I don’t think my mind was working that well.
I’m using a private hospital here, pretty much my only choice, so I can get an appointment easily enough. I found out yesterday that my daughter has a week off from online schooling from the 15th October so I’ll start the process around then.
It’s going to cost around £1,000 for the steroid treatment and Neurologist consultation, will the end result justify the cost…. Hmm stupid question I suppose… any improvement will be worth it….
Do you know once the steroid course is over will there be ongoing medication for my eye or will I get meds for the MS. I’ve read all sorts where some people have MS meds, some don’t etc.
Thanks again for the reply

Chris.

The steroids should deal with the acute relapse and with luck they will fix your eye, maybe hearteningly quickly, which is always good for morale. As for disease modifying treatments to address the actual MS disease process rather than just damp down acute relapses (which is all steroids can do), that’s a whole different subject. There’s plenty of good information on the main part of this MS Society site and the MS Trust site is also very good.

OK, Thanks for the info. I was also wondering if I should be taking any meds to slow down the MS. So far I’ve not been given anything