Keeping a diary specifically to monitor your MS can be a helpful tool, recording how your MS alters in response to different factors - such as activity levels, stress or diet - or at different times. This information will allow you to understand what affects your MS and how. This can help you to identify trigger factors and patterns, for example finding fatigue is more severe on a hot day or that your fatigue might be worse at a particular time of day or after a particular activity. Becoming aware of this allows you to plan your work or activities effectively around this or change how you do things so you can manage your MS better.
Apps can also help you to monitor symptoms and this information can be shared with your MS team. A number of different ones are available with features including interactive symptom trackers, logs for factors which could make symptoms worse such as weather, the ability to record medication and set reminders for taking them, space to log contact details of your MS team. This can then be shared with your MS team. The SymTrac app is one example and is available for both iPhone and Android platforms.
Useful information to keep in your symptom diary might include:
- Information about relapses you have experienced for example the date the relapse started; how you felt immediately before the relapse; when things started to improve; the symptoms you experienced; what helped; whether you were prescribed steroids either orally or by infusion and any side effects of this treatment; if you were admitted to hospital; how long the relapse lasted; if you had a full recovery or were left with some residual problems.
- When a new symptom was experienced.
- Symptom changes and any related factors for example if it was a hot day.
- Questions you would like to ask your health professional either by telephone or at your next appointment.
- Prescription medication you are taking, and any medication you have previously tried. It is also useful to note what effects the medication has had and any side-effects.
- A copy of your MRI scan reports. You can ask your consultant or MS nurse if you can have a copy of these.
- The results of any other investigations undertaken such as lumbar puncture or blood tests.
- A copy of letters between your GP and other health professionals including hospital consultants. This keeps you informed, helps you to remember what was said and is a reminder of when you are due to be reviewed.
How to do a symptom diary
A symptom diary can be very informal:
Friday 7 May
Yesterday I was so tired and achy I didn’t know what to do with myself. Dinner was easy, just to shove something in the oven for 20 mins. I was so far gone in fatigue-land it was like my sofa was keeping me prisoner. When I get tired like this, I have huge concentration difficulties and problems finding words - Does anyone else? Ask on MS people discussion list.
Saturday 5 June
This week fuzziness in my leg has moved up to my arm. Had some pains in my hand also one day, but it has been mostly ok. It mostly feels like both arm and leg is slightly “weaker” and fizzy compared to the left side. Must remember to mention to Sally (MS nurse) on Tuesday.
Saturday 4 September
I’ve not slept very well for a few weeks now and it is getting worse and worse. At the moment my eyes are aching as if I rubbed soap into them, and my eyelids are heavy like they are made of lead. I guess some of this lack of sleep comes from worrying about getting the new kitchen put in but its making fatigue even worse!
Or it may be more structured as a list of dates and doses of treatments, symptoms experienced and their impact, activities undertaken that seem connected to symptoms, appointments, questions to ask, etc
The Spasticity triggers book includes an example of a symptom diary
Last reviewed: September 2015
This page will be reviewed within three years