@StephZ

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StephZ

Keeping track of MS

How do you keep track of your symptoms, triggers, factors, meds treatments? I use a combination of a paper journal & apps and then combining it with excel data sheets for analysis...(disclosure: I'm a research scientist) I wrote about my system here: https://stephaniezihms.wordpress.com/2017/07/22/keeping-track-of-my-ms/ But I was wondering if there are other ways to optimise or add to my system...

cameron

@cameron

That's so very good! I kept a diary for about 8 years, just with a list of symptoms and a daily 0-5 impact scale for each. It taught me to see patterns for MS activity, which has helped me to manage better generally. The day came, though, when I saw that I wasn't learning anything new about how MS is affecting my body, so I stopped. Around the same time, I threw away all the MS books, autobiographies etc. I'd accumulated. I reckoned I didn't need other people's experiences to guide and educate me any more - the abiding issue is sticking with the correct regime! x PS I thought that questionnaire looked familiar, then saw it was from my hospital!

StephZ

@StephZ

I was only diagnosed last Nov and so far this is helping me put the pieces together and on bad days I can just look at the data and detach myself a bit by pretending it's one of my research projects...I mostly read blogs or bits on here for advice if I have a question or topic...not too keen on filling my reading time with more MS things...so mostly read crime novels :) The MS questionnaire is quite common I think - I found it via the MS Trust website...

NiceCupOfTea

@NiceCupOfTea

Hi @stephz I like your style! Apps I use are; Loop Habits Tracker for new habits I'm trying to form and to keep track on what I've been managing and it reminds you Mood Log for symptoms, it's meant to be for logging your mood but you can add anything you want so I've added symptoms, you score the severity, there is also a free text box where I just write a bit about what I've been doing in the day and the weather, and there's a section for medications too Flo to measure periods, again it has a lot of functions Healthy Bladder, I have been told I ought to have bladder concerns but so far I'm okay, I just record for a couple of weeks every so often to see if it has changed I have created my own table to print and record my eating and exercise based on what I want to stick to and fill that in each day. I also record in excel calendars every day any migraines, periods, or possible relapses so it is easy to see the important things and any possible patterns. I kept a fatigue diary for 2 weeks but not going to do that every day. I have just installed sworkit to give that a go! Thanks for linking to your routine, I'm interested to see what other people write!

StephZ

@StephZ

Thanks @nicecupoftea - one of my friends also recommended loop habit...might give that a go - especially once I start my DMT to remind me to take my meds...that's the downside with a paper based system. I'm also interested what other people use - mostly to see what makes sense to track and what can be ignored The bladder app sounds good - I tend to need the loo a lot but I have always been like that but would be good to see if it changes over time & with treatment I want to have a baseline of my MS to see if/how the treatment works

VickyA

@VickyA

I too have a science background, but as well as scoring the tangible stuff and recording diet, therapy, exercise, supplements and (rarely) drugs I also always do a "gratitude" part and record a good thing about the day too. As I have aged with this illness (I've had it for 27 years and I can still walk), I have increasingly discovered that "science" is not an exact thing at all (read anything about quantum mechanics to see what I mean or the interpretation of statistics or how algorithms propagate errors) and that it helps to look more widely at the world. In other words don't forget to appreciate what you already have in this life and record that too.

mmhhpp

@mmhhpp

Steph i agree with cameron, good job there. I have had ms for 7 years, at the beginning i used to record every single symptom and write charts with time you realise they only are useful for recording clear relapses to tell your doctor, but they are not useful specially when you are going to the secondary progressive ms symptoms like fatigue or easy to move from wheelchair to sofa or wc! Or stifness in legs they do not have a clear trend , no logic in this b.... ms The only thing i see is that very hot days are not good in general, like picking up a cold.... the legs and your body becomes stopped , i cannot even go from wheelchair to toilet! I hope you can find a logic cause/effect to all this s....

NiceCupOfTea

@NiceCupOfTea

@stephz I was also recently diagnosed and it looks like there is a a common trend that when you are diagnosed you record everything but after a while there comes a point where that is not necessary/fruitful. I have found patterns in fatigue i.e. Seem to feel most tired at particular times of day, regardless of what I've done that day. I have also found patterns in that I need a wee a good few times in the morning but then fine by lunchtime. No rhyme or reason to my aches and pains and twinges and that kind of thing. Hot days are the devil's work, and it takes me longer to recover to normal than it used to before MS/longer than I feel it really ought to. I am still in the early stages of meeting professionals so I will keep recording to see if anything I am doing is a known bad habit etc. and then I think I'll know more about what I should be looking out for. I think I will then just do a couple of weeks recording fatigue/bladder/general symptoms every few months to see if things are staying the same or not. I have not started treatment yet, I have another scan next week to see if it is active and then I might want to keep checks on my meds and side effects. Good luck :)

potter

@potter

I am a old hippie, I don't write anything down when it comes to symptoms or side effects. I usually don't keep any kind of schedule but I have to pay a little more attention to the timing of my meals. My Tecfidera has to be taken eight hours apart and I don't like taking it to late in the evening. We have no set meal or bed time, we have friends that come to visit but have to go home dinner, at 5 bed at 9. We can easily stay up until 2 or 3 in the morning, very few of our friends can. I think keeping schedules makes you grow older faster. It is good to pay attention and figure out what can cause a relapse or a bladder infection but once you have a handle on it try to relax and enjoy life. Potter