Symptom Journal

[scaredihavems]

As stated in previous posts, I have not yet been diagnosed with MS. I am currently undergoing various testing and have an LP scheduled for November 30th.

It was suggested to me to start keeping a symptom journal. I was just wondering what is the best way to organize it so that when I give it to the doctor, he will actually read it. I don't want to be too "wordy" yet I don't want to leave out anything that my be important. Do I note when symptoms occur, how long they last, or do I just put general symptoms.

I told my neurologist's office about this new symptom of neck pain (burning, pins and needles and pain/tightness) and when they called back I was told "the doctor is aware of your symptom and has noted it, but still wants to proceed with the LP". I guess I just have to live with it until then as no OTC meds are helping at all, and neither is moist heat.

At any rate, I'm just wondering if there is a good way to organize a symptom journal. I'd appreciate any feedback. It seems I get the most help and advice when I post under "general questions" (I've tried under the one for "newbies")

[Shashi]

Hi, I'm sorry you're going through so much right now. Getting a diagnosis isn't easy, and for some, like me, it's well neigh impossible! (I've been in limbo for over four years.)

As for a symptom journal, when I first started having symptoms I kept a journal of them too. I would just write down the date I had the weird symptom and a brief description of it. As time went on and symptoms were coming, but not going, I started only journaling the new
ones.

I finally stopped keeping a journal of symptoms after I handed it to a doctor and he called me obsessive for keeping a journal of my symptoms. He then proceeded to go through the list and dismissed most of them as being caused by anxiety (because I was obviously an anxious, nervous-type person for keeping a journal of my symptoms at all.) He managed to get part-way down the list with that excuse, but there were a lot of things that didn't fit the "caused by anxiety" mold. He kind of turned red when he got to those and also after I told him that I was currently on Wellbuterin and Valium for dizziness and asked how on earth could I possibly be anxious with those two meds? I then proceeded to tell him that any anxiety I had came from my symptoms, not the other way around. I then found another doctor.

Now what I do is just keep a general list of my most common and serious symptoms, and if something odd crops up during a flare, I'll add a little note stating what date it started and ended (if it ever did.)

I find that most doctors' eyes glaze over when you hand them a big list like that, so I don't even give it to them now, but I just read off what's bugging me at the time. My neurologist knows my other symptoms anyway, so I feel this is adequate.

Good luck and I hope you get some answers soon.

Hugs and prayers,

Lisa

[jsoxfan618]

Hi Scared,
I too am in limbo. I too was trying to find better ways to record and organize all my symptoms. I finally decided one day to Google "ways to track my MS symptoms" and I came across this really great software and its in-expensive too. Its called "Symptom Tracker for MS." It was easy to download. I can't remember the exact cost, but it was between 10 and 20$. It has been a god send to me. It allows you to organize all your symptoms, medications, doctors and appointments. The best thing about it is when ever I have an appointment I can just print out the current reports. I no longer have to fumble through a journal. I know I sound like a sales rep or something. Lol Hope I could help.
-jsox

[MrsBones]

I used a day planner first, then a PDA and now my PC synced to my EVO phone.

My time in limbo was quite lengthy, so the journals were sporadic at best. Once I was dx'd, I began keeping it all in one place... meds, notes, appointments and symptoms all go in.

You don't have to be terribly detailed. I put things like, "BBQ today, eyes got worse after a 1/2 hr outside",
" had new symptom today. Felt like ___ " or "3 days with new numb spot. Called Dr. B ."

The important thing is for you to be able to make sense of it and see any clear patterns.

Then for your doctor, prioritize and summarize.
While Dr. B will go through my whole journal if I ask, I know he doesn't really need to. He'll spend as much time with me as I need, but the man has a gazillion patients after me. So before I go to my next appointment, I'll read over my journal and create a list of new symptoms, changes, anything another dr has rx'd or dx'd and things that concern me. That's what he sees.

That way, instead of a whole summer's worth of journaling that describes daily incidents of heat intolerence, he sees one line on a list that says it seems to be worse this year.

If you'd like something you could use online and is free, you could use Google Health. It allows you to keep your symptoms with journaling (includes a start/stop date and a spot to add the text. I just update the symptom instead of re-entering it each day it occurs) along with medical tests, records, allergies, etc. Each section can be printed and taken to the doctor.

I printed my list of allergies to keep on the fridge. My husband can't remember them all, so if there's an emergency, it's all right there. Another nifty feature is a drug interaction tool. As you enter your medications, alerts will pop up if it interacts with another you have entered. I got one when I hadn't removed Baclofen before entering Zanaflex. Of course, the pharmacist and your drs are the best source there, but it's enough to raise flags.

You can also share it online with family members if you wish, so that in case of emergency, they also have the important info. Used with Google Calendar, you can have everything together in your Google account which can be accessed anywhere you have internet and shared securely with anyone of your choice who has a Google account.

[cosake]

MrsBones - great tip on the Google Health; I will be looking into it.

I keep my symptoms in a computer document in a program called TreePad. I list the date and the major issue (Left leg Numbness; Bladder Frequency) in bold text and then the details after that (how long symptom lasts, what it feels like, how many times/day it happens, the date the symptoms ended if applicable). (I keep the list in reverse chrono order so that the most recent is at the top of the list.)

Then if I give the list to my dr. they can view the big picture and then look at the details if they need to. I do also include all of my appts., follow-up phone calls, medications I'm taking, etc. into the same list because that is how I can understand the flow of things when I'm looking at the list.

I also keep a separate list in my TreePad for my medications I'm currently taking so it is easy to print out for appointments; and I keep the medications I've stopped taking in another section in case I need to refer to the list later. I include the doseage, date started and stopped, medication name and why I was taking it.

I also keep in the TreePad software a section listing all of my doctors, their hospital/practice name, addresses, phone numbers, etc.; upcoming appointments; web links to MS info; info I find on MS that I want to refer to at a later date; etc. The TreePad lets me organize everything into its own section. And it is all stored in one little file.

I am not associated with TreePad in any way but I like the simple way I can organize multiple topics into different sections and have a Table of Contents type view. I have it installed onto a flash drive that I keep in my purse and it will run on any computer without being installed on that computer. Makes it very portable.

Other things I use the TreePad for include a separate file for my Recipe collection and we use it for all of our big work projects. Sorry if I sound like an advertisement !

[QuickType]

I've kept a log since my first episode in 2004; I basically started it because no one knew really what was going on. I just have a Word document but otherwise my style is similar to MrsBones' - the date or a range of dates and a brief note. Before my last neuro visit, I made a list with a few points of the most significant issues actually impacting my life, and gave him the year's log to put in the chart.

He didn't seem to think it was a negative thing for me to do, and I told him I tend to want to keep things organized and documented in case of future disability or whatever.

I personally would avoid Google Health, just as I avoid gmail and other Google products other than the search engine. I have had concerns about Google's efforts to collect information and overall privacy. For example, if you have a Google account, Google tracks your search history and it's associated with your username/email by default. Even if you change the settings to not track/keep this information, I find myself a bit uncomfortable with this level of information gathering. One could search Google privacy issues or gmail privacy concerns if interested.

[cosake]

Yes, QuickType , it is also important for your doctor to have records of your symptoms on file in the event of a disability claim.

I planned to look into how the Google Health worked - I agree with you that I feel skeptical about keeping private, personal info stored on the web somewhere.

[MrsBones]

Yes, QuickType , it is also important for your doctor to have records of your symptoms on file in the event of a disability claim.

I planned to look into how the Google Health worked - I agree with you that I feel skeptical about keeping private, personal info stored on the web somewhere.

Here's the FAQs for Google Health. I don't keep any test results,etc there myself, more out of laziness than anything else.

http://www.google.com/intl/en-US/health/faq.html
and their privacy policy: http://www.google.com/intl/en-US/hea...t/privacy.html


What I have there is actually little more, likely less than what I have revealed here. I also have medical records stored online by MedicAlert and my insurance company. I figure that if my more sensitive info is already out there to be had by someone should they really want it, a list of symptoms and meds on Google is fine by me. But that's just me. I'm OK with it.

Always do what's comfy for you.