Forum

going from relapsing remitting to secondary.

Hi all,

Not been on here for a long time. Feeling a bit lost at the mo. have had rrms for 13 yrs and im not recovering from relapses now and my ms nurse said it looks like it might be going to secondary progressive. I got used to knowing what was happening (well as much as you can ,having an unpredictable illness like ms) id have bad replases be ill but then gradually get better. now im not and my vision is effected and i cant drive at mo and im sooooo tired and cant help my children (age 6 and 9). i dont know how to think. Do i expect the worsed and go with my family around the world ( just an example. dont think can actually do that! lol). i am useless at the minute to everyone. Gp has given me steroids ,oral, at 30mg a day for 5 days, i normally have iv but would have to wait 4 weeks to get in, i dont think the oral steriodds are strong enough.

anyway sorry for the waffle. kelly

Hi Kelly

I can’t imagine what you are going through. I’m having a bad enough time getting used to the idea of having to use a stick during my current relapse and I’m keeping everything crossed that this is just a temporary thing and I can ditch the stick when the steroids have done their job. It’s the worst roller-coaster ride in the world and nobody else understands unless they have lived through it, that’s why this forum is such a god-send.

I do know that your steroids aren’t strong enough. My hospital sent my GP a fax telling him to prescribe 500mg daily for five days so 30mg a day won’t be strong enough. That is why I contacted my hospital first. I know from experience that my GP doesn’t know what to prescribe unless the nurses or neuro have told him first! They need expert advice just as much as we do.

Take care and I hope someone with SPMS can offer some insight into how life carries on. When I first joined my local MS branch I worried that I would find it depressing seeing just how bad things can get. However I have met a few PPMSers there and I find them truly inspirational, they enjoy life as much as I do and never let their disability stop them having fun. As one man said to me, he cannot run around playing football with his grandchildren but he plays cards with them and dominoes and still has fun with them; he just finds different ways of having fun.

Tracey x

Hi Kelly

My experience is a little different to yours in that my diagnosis came straight in with SPMS.

SPMS is as varied and unpredictable as RRMS, anything is possible. Did you know that progressive MS can plateau?

Tracey is right, focus on each day as its comes and what you can do. The future is unknown so there is no point in wasting time now worrying about what may or may not happen.

Good Luck!

Anne

Hi Kelly I know exactly how you feel as I too have recentley gone from RR to SP fortunatley my kids are a lot older than yours 19 & 15 so they can do a lot for themselves, having said that even when I was RR there were times that I couldn’t do things with/for them because of how bad the relapses were. It took me a long long time to come to terms with this disease I was so determined not to let it beat me, and my attitude is still a little bit the same, don’t think of yourself as useless your never that and I’m sure your loved ones don’t think that of you either. Life goes on even after SP it just might be a little slower with a few bumps along the way. Take care Sue x

Hi Kelly

It may be the case that your GP cannot prescribe more than what you have ben given - but you could be on a higher dose.
Contact your MS Nurse in the morning and put the problem to her.
Last big relapse, I phoned the nurse, she faxed my GP, I got a dose that was equivalent to an IV dose.
It was not the same in numbers - IV is absorbed better than oral - but the nurse should be able to sort it, just like Tracey suggests.

Geoff