Way To Organize & Keep Track Of Symptoms

[jamilea]

I wish I had started this in July for this time around but anyway . . .

Can anyone recommend a program where people can keep track of their symptoms, duration, etc?

Also, I am trying to get a grasp on something specific. For example . . .

10/21/16, Suzy wrote: "I experienced dizziness that lasted for two weeks" . . . Does the dizziness need to be continuous, 24/7? Or can it come and go throughout the two weeks to count for the duration logged?

I hope this makes sense.

[hunterd]

I wish I had started this in July for this time around but anyway . . .

Can anyone recommend a program where people can keep track of their symptoms, duration, etc?

Also, I am trying to get a grasp on something specific. For example . . .

10/21/16, Suzy wrote: "I experienced dizziness that lasted for two weeks" . . . Does the dizziness need to be continuous, 24/7? Or can it come and go throughout the two weeks to count for the duration logged?

I hope this makes sense.

I am going to try toanswer
this in a way that makes sense. Since you were talking about dizziness, I get dizziness that would last for only an hour or two, but I would still count it. But I would also note frequency and duration of each incident. This is quite different than being dizzy for a continuous period of two weeks compared to being dizzy for two weeks and having each incident last for 1 hour.you may be dizzy ""my" way for a total of 12 hours in 2 weeks vs. 336 hours.

[jamilea]

But how would you quantify an hour if you only feel dizzy while walking around so you lay down for awhile and only feel dizzy when you are not laying down?

How do you know it lasts an hour? Know what I mean?

[pennstater]

There is a mobile app offered by MSAA called My MS manager. I don't use it, but you may find it helpful or may take some thoughts away on how to track/summarize symptoms in your own.

I use a spreadsheet to track symptoms and date and have evolved into putting number of hours each day I experience symptoms in the intersecting cell and have additional column to indicate severity on scale of 1-5. I also track hours slept at night and napped as "separate" symptoms, and rate quality of sleep 1-5 as well. The last column I have is freeform text that gives me a note to write, so if something needs to be clarified, I can. So in your case, quick note to say dizziness stopped when laying down

So this is one tab in the spreadsheet, then have summary tab on top of it that counts instances of a symptom (value gt than 0 hours) , total hours as % of day and month, avg hours, min/max hours, then same for severity. It automatically does it.

I did this and it really came in handy as support for my disability appeals, in addition to documenting for neurologist and making me prioritize my talking points for each visit.

I also would link to another spreadsheet tab, with date and detail notes if needed for a date in general (bad day, out in heat 8 hours) or for specific symptom (intermittent blurry vision alleviate by sleep but not just rest, put hand in hot pan for cognitive dysfunction) as examples.

This was easy though for me as familiar with excel from work and how to produce "intelligence"reports from rows of data, as that was what my last job was: defining/developing business intelligence reports to provide insight into trends, performance, etc...

My point in telling this is my approach worked for me because it played to my knowledge. That won't be the case for everyone and many would think overkill. But finding something that plays to a strength of yours would make it more likely you would stick to it. We can create all we want, but if we don't put the effort into tracking,it is of no help.

I would start journaling at a minimum, the review and/summarize prior to visit. That is how I started. It took more time to prepare for visits, but I was still able to document a summary, eg, 45/90 days dizzy, on average 1.5 hours, alleviated by sleep, usually occurred between 1pm and 4pm. On 5days, chronic dizziness, remaining 40 days, no dizziness. Of the 40 days, 24 were days not working. That type of summary would give neurologist a good insight.

Good luck. It takes a lot of work but well worth it.

[jamilea]

Kathy thank you. I will download the app.

I am a fan of spreadsheets. I use them a lot at work. Uhm, would you mind emailing me yours so I can use your format? I'm trying to understand from your words, but I can't visualize it. If you don't feel comfortable with that, maybe you could try to type it as it would be on the spreadsheet as an example.

[Mamabug]

Kathy thank you. I will download the app.

I am a fan of spreadsheets. I use them a lot at work. Uhm, would you mind emailing me yours so I can use your format? I'm trying to understand from your words, but I can't visualize it. If you don't feel comfortable with that, maybe you could try to type it as it would be on the spreadsheet as an example.

Jamilea -- FYI
If you want Kathy to email you a spreadsheet, you'll need to post your email address in your profile, as specified in our Guideline #2 http://www.msworld.org/more/guidelines/#personalinfo, and she will need to look it up there.

[pennstater]

Jamilea - will be happy to. I leant my laptop to niece at college as hers died, but should get it back in a few weeks. I will need to add some fake data for you to see what it can do.

My email is in profile, so you can just send me one and will reply to it.

[jamilea]

Yes ma'am! I just put it in there.