Diagnosed in October 2015. Spent the last year on Techfidera but have had two relapses. The most recent, which I am still recovering from, occurred in mid November and I am still very weak with constant nerve pain and loss of balance. I have been off work now for around five weeks and am signed off until mid January but how long should I expect to be recovering from this relapse? I know everyone is different but can it really take months to recover from a relapse? The last one (June) lasted around 10 days. This one, I admit, is more severe and I have had three days of IV steroids in hospital but its very slow going on the recovery. Any advice or experiences would be very much welcomed!
P.S. Stopped taking the Techfidera 10 days ago as I start Gilenya (Fingolymod) second week in January.
P.P.S This is my first post having just registered! A big hello to all!!
Hello and welcome.
Sorry to says JP, but your recovery may well be complete. What you are left with may be how things are now.
Sorry, that took off before I’d finished!
Similar to yourself, I was dxd May 2015 with RRMS after a biggie cluster of episodes within the space of three days. IV steroids in hospital did the job and I made a great recovery. No lasting affect, it was easy for me to be dismissive of my diagnosis. So, I have MS? No big deal, it hasn’t affected me and I’ll be fine. Three months later I had another partial paralysis episode and after the usual hospital admittance and Steroids, I left with a crutch as I was unsteady. By December I was using a rollator on occasion, by March I was needing a wheelchair for any distance. When I met my Neuro again in June (this year) she confirmed what I’d suspected. Not RRMS but PPMS. I was 55 on diagnosis last year and believe my Neuro dxd PPMS, to allow me the chance of using DMD’s. Even now since my change of diagnosis, she has allowed me to continue with Tecfidera, at my request, because, well, you just don’t know…it might be some good. Good luck with the Gilenya.
Welcome to the forum.
Unfortunately, you’ve hit the nail on the head when you said everyone’s different. Plus, not only is everyone different, but every relapse you have can be different in terms of symptoms, severity and remission time. Added to which, your reaction to steroids can differ each time, so on one occasion, IV steroids will work wonders, the next time they might not have much impact. Equally, some people think oral steroids are equivalent to IVs, others believe that they are completely different.
So, there is no real answer to your question. I’ve had relapses that last a few weeks, big nasty relapses that respond to IV steroids and start to resolve within days (although it may still take quite a long time to get as good as it’s going to). I’ve also had many relapses that do not remit completely. In fact, in the early days of MS, most relapses did either completely remit or mostly so, but in the last 10 years (it’s been in my life for 20 years), generally, a relapse does not more than partially remit. Nowadays, my neuro suspects that I’m SP rather than RR so it’s pretty much historical relapses that I’m referring to.
What I would say is that you can continue having improvements following a relapse for months. And it sometimes comes as a surprise that you’ve improved without noticing. So don’t give up hope. You will probably continue to improve over the next weeks and even months. If you get some decent physio sorted out you’ll do yourself a lot of favours. It’s not easy to live with RR, the uncertainty is a sod. But it’s still probably better than to be progressive from the start.
All the best for continued remission.