Multiple Sclerosis Community

The Timeline

Of all the advice we give on the forum, the advice to be familiar with all your medical information is the most important. You cannot advocate for yourself, know if your doctor is working from the right information, or recocognize 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 of the 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.   It is best if a timeline is maintained as it happens, but we usually don't know that we are going to need one, so parts will often have to be made up using our memories (try not to snort!), our medical records, and the help of someone who has gone through the process with you.

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 through all of the words to filter out the information that they really want. In fact, a busy doctor may feel his heart sink as he sees pages and pages of descriptive text.   Many of us do have neurologists that would be interested in this Journal later.  That is good, because it would give the doctor a keen insight into you and your "story."

Here are a few paragraphs from my own personal journal timeline written in late 2006 before I knew much about MS.

1)  In August ‘07 ago I had a disturbing episode in which my right arm suddenly became weak. I had just showered and dried off without noting anything unusual. Then I suddenly couldn’t lift my right hand even to my neck to apply some lotion. I could barely grip the cotton ball. There was no pain or numbness. For about 24 hours the arm and my grasp remained weak, and I couldn’t even knit (which requires minimal motions of my R arm) Then for about a week I could use the arm and hand to some extent, but it still felt heavy and fatigued. It was a couple months before the sensation of fatigue completely resolved.

2)  Any major exertion causes seemingly disproportionate fatigue. If I try to climb the stairs several times, not only do my legs feel tired, but my arms and hands also. Exertion makes the tinnitus worse. If, on a good day, I over-exert, I pay dearly with 3 to 4 days of severe fatigue, weakness and increased need for sleep. Traveling by air causes this reaction also. I make a lousy houseguest when I visit for the holidays.

3)  In December, 2006, I had about 3 days of marked, painful photophobia, with pain on eye movement. I am always light sensitive, but this was quite different. The globes were tender to pressure. There was no injection, but some tearing and no problems with my vision. When I blinked there was a very brief flash of light. The only problem I have is double vision some mornings. This is usually associated with other symptoms of the vertigo and resolves with more sleep.

4)  For several years I have had esophageal spasm presumed due to GERD. It comes and goes, but presents with dull, aching chest and jaw pain (cardiac stress test "stone, cold normal") and difficulty swallowing. UGI in spring 2003 showed "tertiary esophageal spasm" and normal gastric emptying. Sometimes food won’t go down and attempts to wash it down will initially result in the liquid being ejected like projectile vomiting. Further small sips are painful, but I can feel the bolus dislodging and disappearing. I prevent this by washing all food down with liberal liquids. Sometimes I will go several days with difficulty initiating swallowing. Intentional 50# weight loss two years ago did not improve these sx. In the last three weeks I have had repeated episodes of rapid-fire hiccups and frequent, unladylike belching hours after eating as if my stomach wasn’t emptying. I don’t usually have heartburn or indigestion. I just began Prevacid in case the gastric problem is merely hyperacidity.

5)  There are a couple things I have noticed which seem more neurotic or psychiatric, but I’ll mention them anyway. The first is periods where several times a day it felt like warm water running down my inner thigh. These were so startling that each time I immediately thought I had been incontinent and checked for wetness, but there was none. I have had two periods of these sensations occurring several times daily, each lasting for 2 or more weeks. These occurred about 2 years ago. The second odd thing occurred during the time last summer (2006) when my right arm and hand felt so heavy and weak. When I would attempt to write, it felt foreign as if I was trying to write with someone else’s hand.

6)  Finally, my attitude toward all of this varies considerably. Most of the time I am convinced that all the problems are referable to the vertigo and to being deconditioned. I tell myself that the spasticity "just happened." When the more severe things happen, like my arm not functioning, and I should seek attention, I find myself in a fear/denial mode deciding beforehand that the Dr. will chide me or discount what I am saying. (In all fairness, I have not told my current neurologist about the episode of arm weakness nor of the eye pain) When I try to look at my condition clinically, I cannot help but consider problems like MS, though I realize how unlikely it is with my age and clear MRI’s. And then there are the common periods of depression when I feel completely apathetic about my decreasing function. My sister has left her family and moved in with me permanently to help manage the house and my day to day activities. I spent my entire life until 1999 working 60 hour weeks and was known for high energy and bouncing good humor. This is a major turnaround in my personality.

I actually gave this to my new neuro instead of the streamlined one. He accepted it, read it like lightening, placed it in my chart and took his own history which took more than an hour. As I said, if they are the right doc they will care that you took the time to organize your history.

Remember that I use medical terminology in my timeline, because that is the way I write.  You will use your own words and descriptions.  EVERYTHING is best described in your own words and not using official terminology.  This is true in Both kinds of timelines.

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The Doctor's Timeline

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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 - fiction

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.

**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.

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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 which was helpful. 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

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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."

This an unfinished Health Page

 

Quix