Keeping a diary specifically to monitor your MS can be helpful to you and your MS team. You could record 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 can help you to identify trigger factors and patterns. For example, you might find that your fatigue is more severe on a hot day or after a particular activity. Becoming aware of this allows you to plan your work or activities effectively or change how you do things so you can manage your MS better.
A symptom diary can also help you remember what's happened since your last appointment, and keep a record that you can show to your Neurologist or MS Nurse when you next see them. You could dedicate a notebook or diary to tracking your MS symptoms, perhaps a 'week-to-view' format so you have enough space for notes. Keep this with all your correspondence from your MS team, or print out a ready-made form and fill it in each week. Some free printable examples can be found online. Although they may not be specific for MS, they offer a useful starting point.
There are several different mobile apps which are designed for people with MS. Many of them incorporate a symptom diary and may also include reminders for taking medication, recording injection sites, and logging the contact details for your MS team. Some can be synchronised with your fitbit or the weather to help with plotting trends in your MS.
Examples of MS diary apps include:
SymTrac app - iPhone (iOS) and Android platforms
MS Self - iOS only
MS Management - Android only
MS Notes Journal - Android only
Useful information to keep in your symptom diary
- 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 chatty and informal, if that inspires you:
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, consisting of a list of dates and doses of treatments you have taken, symptoms you have experienced and their impact, activities undertaken that seem connected to your symptoms, dates of appointments, and questions to ask at your next appointment.
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Making the most of appointments
Useful advice about getting all you can out of your meetings with health professionals.