We often hear from people who don't know who to call or when to report a possible relapse; we also hear from health professionals who want to improve the relapse services they provide.
So, the MS Trust has created two relapse resources, one to support people living with MS and one for MS health professionals running relapse services.
Relapses may not be one of your favourite things but almost everyone with MS has had experience of a relapse at some stage, and many of you will have coped with several since you were diagnosed.
A relapse is a relatively sudden (over hours or days) episode of new symptoms or worsening of existing MS symptoms. They are most common in relapsing remitting MS, but people with progressive MS can have them too, though less frequently.
"Usually I have no trouble identifying a relapse as it’s a major difference from how I normally am. It’s usually when I feel like I’ve got flu coming."
Person with MS
"I was starting to suffer from dizziness and tingling in my arm so I called my MS Nurse and said I might be having a relapse. She suggested to first go to the GP to check if I might have a bladder infection, just in case. Which I then turned out to have. I was put on antibiotics and the tingling and dizziness disappeared as did the infection."
Person with MS
"If it’s something that stops you managing your day to day routine, something that has an impact on your day to day life, then that probably is a relapse… but if in doubt, shout! It’s better that you contact your MS nurse if you’re concerned you may be having a relapse than struggle on and don’t report it. We need to know if you’re having relapses, so that we can review disease modifying drugs with you."
We often hear from people who don't know who to call or when to report a possible relapse; we also hear from health professionals who want to improve the relapse services they provide. So, the MS Trust has created two relapse resources, one to support people living with MS and one for MS health professionals running relapse services.
Information for people with MS
Our relapse page is a good place to start if you have questions about relapses, what to do if you’re having one and some useful tips on how to stay prepared for them. The page covers:
- What is (and isn’t!) a relapse?
- What happens in a relapse?
- What should I do if I think I’m having a relapse?
- How are relapses treated?
- Recovering from relapse
- Can I reduce my risk of having a relapse?
- How to be as prepared as possible for a relapse
Let us know in the comments below if you have any tips or tricks for dealing with relapses.
Guide to improving relapse services for MS health professionals
We work with MS teams around the country, looking at ways of improving services to ensure that everyone can get the care they need. MS nurses, and other health professionals such as GPs and neurologists, provide care for people having relapses, however services often differ with regards to how this care is delivered.
With this in mind, the MS Trust has created a new resource – Eight steps to improving your relapse service – which highlights the priorities for MS services to provide good, responsive care for when you are having a relapse. We worked with over 80 MS nurses from around the UK to reflect the challenges that different services face, from urban to rural, ‘one man bands’ to big hospital teams.
With the combination of these two resources, we hope that, together with your MS team, you can draw up an action plan to manage relapses in the best possible way.
If you have any questions or concerns about relapses, feel free to contact our information team.
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