kad21 06/01/15
Last reply 3 years ago
When will you KNOW it's MS

I’ve had MS for nearly 18 months now, I know this is not long in the grand scheme of things. I can say that I’m finally over the diagnosis and on my good days I don’t think about it at all. However, how have people managed with getting to know what flares their MS up? How do you know when you’re having a relapse as opposed to a flare up? Last week I had a funny sensation in my left foot, it felt like I had an elastic band tied around my ankle. Today though it has turned into an uncomfortable electric current sensation. It’s one hurdle after the other!!
What have your experiences been in terms of exercise, diet etc? Any tips on how to get to know my ever unpredictable MS a bit better?

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3 years ago

Hi there, Kad21. I know exactly what you mean and I agree – it really is difficult to pinpoint what is and what isn’t a relapse. But that doesn’t mean you should give up trying – your relapse history informs the neuro team’s decisions on drug treatment. The way I dealt with it was to keep a symptom diary. I started by listing all the symptoms I’d ever had. Then, I clustered them into symptom types – e.g. sensory, pain, weakness etc. to produce a final list. As I recall, it was something like: knee pain/leg weakness/drop foot/bladder urgency/coldness in leg/pins and needles in foot. I then gave each of these a letter e.g. knee pain = a; leg weakness = b (etc). I devised a score of 0-5, with 5 being the most severe. In my pocket diary I entered a daily tally, which could be something like: a-1; b- 3; c-0 (etc.). It takes seconds to do. Then, at the end of every month go through the scores and look for patterns. When I analysed my results, I saw that some symptoms had gone away without my realising it. And also, I found that I was more relaxed generally – at some level, the fact of writing it down sort of discharged the worry, if that makes sense! When I saw the neuro, I took along with me a digest of the diary and was able to explain more clearly what was going on. I kept this diary for around six years! I eventually stopped because I’d got to the point where I knew my body enough to trust my interpretation of symptoms. Hope this makes sense and good luck! xx

3 years ago

Thank you so much! I’m definitely going to put this into practise. I find these symptoms hard to describe in a way that sound remotely medical, I.e ‘elastic band’ and ‘electric current’ lol.
This is definitely a method I will try because right now I have no idea what my body/MS is doing so I automatically panic when I get a new symptom as a result of not paying attention to it all on a day to day basis.
Thanks ever so much for your help! X

3 years ago

And let us know how you get on! Big hugs, Kay

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