Symptoms or relapses?

New diagnosis and before diagnosis
1

Hi, just a quick question, I’m still getting my head around MS, like most of us! My symptoms, like weird sensations in my lower legs and feet and not being totally balanced, seem to be with me for days, so are these symptoms or a relapse that is lasting some time. I still haven’t worked out the different forms of MS but I know that RRMS is the most common, when do you know that you are having a relapse or are in remittance?

Thanks! Sarah

2

hi sarah

i was having a massive relapse when i was diagnosed on the strength of just one mri.

following this i had a good 6 years of remittance.

now i feel like i’m walking through cheese!

v e r y s l o w l y.

basically i have just slowed right down.

fortunately i have always been a stubborn mare.

so i’m sipping a lavender gin (lovely) and then i will slowly drag my carcass off to bed and watch some telly.

i haven’t told my ms nurse because i don’t think there is anything she could do for me.

just keep on doing your best and if all else fails try a lavender gin!

carole x

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3

Hello

It takes time to get to know your own variety of MS, even if 10 people are all diagnosed with RRMS, they will each have their own variety of ‘normal’, and what seems to be an everyday symptom for person 1, can be a relapse for half of the others.

So it’s a bit difficult to say. The MS Trust says:

To be considered a new MS relapse:

  • old MS symptoms must have become worse or new symptoms appeared
    Most people with MS experience some symptoms continuously, but between relapses this background level will remain more or less stable. It’s when symptoms change that you may be having a relapse.
  • symptoms must last for at least 24 hours
    However, relapse symptoms generally last for days, weeks, or even months.
  • symptoms must occur at least 30 days from the start of the last relapse
    MS symptoms should have been stable for about one month before symptoms become worse or new symptoms appear.
  • there must be no other explanation for the symptoms
    Heat, stress, infections and other factors can make symptoms worse and can be mistaken for the start of a relapse. When these are dealt with, the symptoms will improve.

(See Managing relapses | MS Trust for more information)

So, it could be either. I know that my relapses always took months and months to get remission from. It generally seemed to take so long that it would only be after months had elapsed that I’d suddenly think ‘oh, my right leg seems a bit better’ (or whatever!)

It can take years to get to grips with what is going on with your body. I recommend starting a health diary. I’ve got an app on my iPad and phone that has my health diary that I’ve been keeping for nearly 7 years now. Without writing down what symptoms feel like, I’d never remember!! But any kind of diary works, whatever you’re most comfortable with, the traditional type of handwritten diary, just a written notebook or Word file, or an app. It just helps to keep track.

All the best.

Sue

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4

Thanks Sue, I think I am slowly getting to know what is happening! I know that my period makes me feel worse but look forward to that ending as I am going through the perimenopause! Sarah

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Thanks Carole, I will have to try lavender gin, I like gin! x

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Hurrah for the end of periods. I hope your menopause is as easy as mine seems to have been. I just stopped having periods a few years ago and that’s that. I think lots of people (mostly women I believe!) find their MS symptoms just get a bit worse at that time of the month.

Sue

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