Timelines - All About

[Quixotic1]

Of all the advice we give on the forum, the advice to know all your medical information is the most important.  You cannot advocate for yourself, know if your doctor is working from the right information, or reocognize what role a medical test plays if you don't have access to all the information.  We always recommend that anyone with any complex illness make and maintain a timeline.  This is especially useful for someone who is still searching for a diagnosis, but actually those who are diagnosed still benefit from being in control of their own information, too.


A timeline is just that.  It is a listing ofyour symptoms that occur, when they occurred, how they developed, how long they lasted and if and when they ever improved or disappeared.  It includes the doctors that you saw and what their thoughts were, plus what abnormalities were seen on your examination.  It also shows what testing has been done and what the results were of those tests.

There are two types of timeline.  I believe that both are useful, but for different purposes.  These are the journal type of timeline and the abbreviated, Doctor's Timeline.

The journal timeline is the one most people will instinctively write.  It is the story of what a person has gone through.  It is how we describe our suffering, our confusion, our hope or anger at our doctors.  It is often very long and uses a lot  of descriptive words.  It is what we would write in a diary.  I believe this is important because it allows us to express ourselves.  It is our best way to tell how our lives are changing and how the ilness is affecting us.  But, this is not the timeline that we want to give to our doctors (usually.)  These journals can take a long time to read and often do not show clearly the relationships between our symptoms and any treatments.  A busy neurologist will rarely be willing to take the time to read and sort througth all of the words to filter out the information that they really want.  In fact a busy doctor may feel his heart seek as he sees pages and pages of description.

The Doctor's Timeline is what we usually want to give to our doctors.  It is an abbreviation which contains the important information, but not all the words.  It should be easy to skim and gleen the important facts.  Many people question whether such a document will lead a doctor to decide that a person is too obsessed with their health and is more of a hypochondriac.  In fact, we do find that this sometimes happens.   But, in the years of this forum, we have also seen that the doctors who are inclined to believe this are going to be dismissive anyway.  The doctors, particularly neurologists, that we are looking for are the ones who welcome our timelines.  If a doctor dismisses your work in organizing your data, then they will likely dismiss you too.  We need to walk, hobble, lurch, limp and roll away from them - quickly!  



A Doctor's Timeline Example


2004

First problems appeared 2 months after birth of 2nd child.  Weakness of R leg causing a limp.  Numbness and tingling in R hand.
CT scan - Negative for stroke
Lasted for approximately 3 weeks, then began to improve.  Completely disappeared in 2 months.


2005

Spring - Severe dizziness, several falls.  Couldn't drive for 6 weeks.  Tingling in both hands, but worse on the R
Severe fatigue lasted for 3 months
Diagnosed as inner ear infection.  Meds didn't help.

2006

January - Fatigue returned.  Two weeks of dizziness.  Hands numb and tingly, worse on R.  Legs fatigued with just a little walking.
R side of face numb along jaw.  This continued for several weeks.
Saw neurologist - noted that reflexes in legs were hyperactive.  Sensation was decreased in legs and face.  

MRI (02/16) - normal, with 2 "UBOs" .  Neurologist stated I absolutely didn't have MS, and that I was too old at 43.

2007

April - Everything returned with severe fatigue and dizziness again.  Legs were weak.  I couldn't climb stairs without stumbling.  Severely intolerant to heat.  During hot weekend, got too warm during picnic and legs just buckled.  Had to be helped to car.
Began to have strong urinary urges with accidents.  

MRI - 05/21 - 3 UBOs - neurologist stated that it was "normal for age."
Blood tests : CBC, Chem panel, ANA, Sed Rate, - all normal
VNG - suggestive of a "central" cause for dizziness.

After this episode most of the symptoms improved after a few months, but the fatigue, urinary accidents, and heat intolerance have never gone away.

The leg weakness still appears if I get too tired.

December - Suddenly developed severe, stabbing pain on the R side of jaw caused by chewing.  Pain was most severe I have ever had.  Fatigue worsened.  Weakness in legs became worse, now with terrible spasms on the R.  Spasms happen all day, but are worse at night.

Neurologist prescribed Ativan for spasms and Lyrica for face pain, but it didn't work.

2008

All symptoms remain.  Still terribly fatigued.  Legs seem to be getting weaker.  Spasms only at night.  Still having urinary incontinence.  Face pain episodes less often.

October - 15th - Awakened with severe pain behind R hip

********

This is an example of the most pared down kind of timeline.  If the doc is interested he/she will ask more questions.

I also believe that a good timeline will begin with a descriptive paragraph about the person you were before the problems started and what you've lost.  If need be deal with any depression or anxiety here stating that since you began losing so much function you have become depressed and worried about your future.  Or, if appropriate, that you have a history of depression/anxiety and these symptoms are very different from that.  Address stress if need be.  You know how you react to severe stress and this "Isn't it."

Thiis an unfinished Health Page

Quix

[Guitar_grrrl]

Thanks!  

I remember seeing this post in February.  Of course when I saw my Neuro last week, I forgot it!  I did give him the most important details, though (increasing leg weakness, urinary surprises).  He already knows I get all the usual suspects in the paresthesia department, and that hasn't changed.  My LP is this Thursday, and I think I'll hand him a short and sweet printed version then.

Happy Spring, Happy Easter, Gud Pesach!

Namaste,
Guitar_grrrl

[SickMomma_PDX]

This is hugely helpful since I, too, am preparing for my neuro appointment. Plus, I think it's just good to have in general, for my own records.

Thanks so much to LGK54 for bumping this so I saw it!!

And many, many thanks to Quix for putting this together and especially for including an example of what a good timeline for a doc would look like!!

--SM

[Lulu54]

*bump* for military wife and all others working on a timeline

[doni54]

Hi Terry,

I guess great minds work together.  I didn't see this post and I posted the same thing on your question about timelines post.  

Sorry Quix, didn't mean to duplicate your post.

doni

[saveone]

Quix thank you so much.  I believe you may have posted this or some of this before.  However, I do remember I am going to see a memory specialist....lol.  

I am going to print this our and lay it beside me as I work.  I have a week left to get it together.  I am hoping this week will be better than the last two.

My son wrecked because of ice on the road.  The car rolled down an embankment and landed on its top.  He was okay...minor cuts etc.  He had his seatbelt on.  Maybe I taught him something after all.  Still dealing with the insurance co.  finding a new car...canceling rescheduling appointments etc has taken its toll.  

This week I plan to think positive thoughts and work diligently.

To all others you have been great

terry