Forum

2nd relapse

Hi,

I’m just looking for some advice really. My partner, Michael, was diagnosed in January with episodic MS. It was a huge shock as he’d had no symptoms before. He’s 27 years old, usually goes to the gym every night & played football at the weekends, so we were totally taken aback when he was diagnosed…I’d actually told the neurologist that she’d got it wrong! Since his diagnosis in Jan, he’s had no follow up appointments or support from anyone at the hospital - he was given 3 days worth of steroids, and then sent home.

It took him about 8 weeks to get back to some sort of normality after his first episode, however, he is now having a relapse. He was admitted to hospital on Thursday (18th) morning, they done an MRI scan which shows more lesions and that it has progressed quicker than they thought it would - I still don’t fully understand it all to be honest. The neurologist had him put on a drip of steroids for 3 days (which have now finished), although he seems to be getting worse, not better. They have said that there’s an MS specialist usually based in Oxford who will be able to advise on treatment, but she’s on holiday this week, so we need to wait until she returns on the 29th! They’re keeping him in this week, until the specialist returns, to start physio - although he can’t move so not too sure how that’s going to work.

We’re just growing more & more concerned as we’re due to fly out to Las Vegas in 5 weeks to get married. We were hoping that treatment would be started and that he’d at least be showing signs of improvement by now. He’s unable to hold his own weight or use his arms & hands, they’ve told us that he has a large legion on his diaphragm which is affecting his breathing. We’re worried that while we’re waiting for the specialist to return from her holiday, Michael’s symptoms will become permanent? Would starting treatment sooner help his recovery? Also, they’ve told us that it’s progressed quite quickly in 4 months, would this still be classed as episodic MS?

Thanks in advance :slight_smile:

Zoe.

Hi Zoe, and welcome :slight_smile: How horribly alarming for you both :frowning: The only treatment for MS attacks is steroids, which obviously Michael is already getting, so there is nothing else that the MS specialist could for him right now. Steroids work by reducing the inflammatory processes in the body which cause acute MS symptoms. Unfortunately there are no guarantees about how quickly they might work or even if they will work at all, but they do stay in our system for many weeks so no immediate improvement is not a disaster - it might just be slower than hoped. Even when steroids don’t work, time usually does. Gradually, people with relapsing remitting MS (RRMS) get over the relapse although this can take many months and be less than perfect. Either way, I suspect Vegas may be too soon to be a reasonable expectation. So sorry :frowning: (And I really hope I’m wrong!) What the MS specialist may do when she comes back is to prescribe disease modifying drugs (DMDs). Michael may qualify for Tysabri, the most effective of these, because of the severity and how closely spaced his relapses have been, but obviously only the specialist will be able to decide that. (There are eligibility criteria and risks to consider.) However, DMDs are preventative, not curative, so getting on something right now won’t get this relapse over any quicker :frowning: (I should say that some people find that some symptoms improve after they’ve been on Tysabri for a while, but that is not a claim the manufacturer makes and it definitely does not happen to everyone.) As far as the diagnosis itself goes, the information you’ve provided would suggest that Michael has RRMS. It’s typical features are periods of acute attack followed by some improvement. The attacks can be spaced closely together or far apart and they can be anything from very mild to very severe. Progressive MS has a very different pattern: it causes gradual worsening of symptoms over time. It’s sort of like a slide to RRMS’s stairs. If you want to learn about MS, then I’d recommend the publications on this website and on the MS Trust website. They are free to download or order hard copy. Please keep one thing firmly in mind when reading: MS is massively variable. Michael will NOT get everything that is mentioned and some of the things he gets may be only mild. More and more DMDs are coming out these days that are very effective at slowing MS too. More than anything, please know that the vast majority of people with MS live a long, happy and fulfilled life. It is hard at times, and it’s certainly not sonething that anyone would choose to have, but it is NOT the end of the world and life can still be good. I really hope that the steroids work soon and that you make it to Vegas :slight_smile: Karen x