Timeline

1980 (age 26)

* Found to be color blind during physical for job - referred to as red/green deficiency

1981 (age 27)

* Had first break out of shingles.  Happened only once this year.

1990-94 (age 36-40)

* Unusual leg weakness if hot or tired

* Arms weak, can't hold up to fix hair

* RLS... had problems with this for years, since early 20's......worsens and become more frequent

* Stairs become something to avoid. Legs become weak after going up even small flight.  Have to be extra careful when going down or will stumble by misjudging step. Also trip going up stairs.

* Continue to have shingles 1 to 2 times a year,  found that it happens at times of great stress.

1995-96 (age 41-42)

* Pronounced weakness in legs after exercise or exertion.  

* No tolerance for heat whether inside or outside. Makes me weak and very tired.  Seems to cause unusual and hard  muscle spasms in feet and calves

* Unable to step onto escalators without complete concentration, can't judge when to step on

* No tolerance for alcohol.

* Restless leg problems a minimum of 20 days a month.  Sometimes severe and causes loss of sleep.

* Continue to have shingles 1 to 2 times a year.

1997 (age 43)

* More pronounced problems with heat during summer months.  Feelings of weakness during exposure to heat and for hours afterwards

* Severe pain in my right hip, to the extent that sometimes it would give out on me.  This happened on a daily basis for months, sleep sometimes disturbed due to pain.  

* Pain in right knee started at same time as hip pain, with the same frequency and duration.

* Restless leg continues to interrupt sleep and is almost a nightly problem

* Continue to have shingles 1 to 2 times a year.


1998-1999 (age 44-45)

* Noticeable, unexplained fatigue starting in early afternoon, not like just being tired, but overwhelming.  Worse if I have been active, but still noticeable even with light activity.

* Pain subsides in right hip and starts in left hip and knee, pain and frequency almost identical to problems with right hip & knee

* Arms get tired and weak easier, tremble if I have used them a lot.  

* Random sharp pains from head to toe. Pains last only min or two then gone.  Happens everyday on and off all day

* Ticks and jumping muscles in my legs, arms, and eyes.  Occurs at least once a month and last all day off and on.  

* Some slight problems with coordination, playing softball with church group for the first time and fell on my face while trying to run to first base.  By the end of 1999 I was unable to run at all, at times if not tired I could walk at a fast pace but just could not coordinate my legs enough to run. This was hard to accept due to always being a runner.

* Always took hot baths in the whirlpool after work, had to stop due to being too weak to get out of tub.

* Restless leg same

* Continue to have shingles 1 to 2 times a year.


2000 (age 46)

* Severe cramps in my hands, feet and toes, even occurs sometimes in the muscles of my arms. One instance of cramps in my feet and calves felt like my foot was turning back almost to the front of my calf. This was extremely painful and walking didn't help, lasted for about 2 hours.  Cramps usually occur when I lay down. Frequency of attacks are usually one week out of a month and I will have attacks every day.  Happens no less than about every 3 months.  Always more frequent during the summer months.

* Can't work an 8 hour day anymore, become fatigued and legs weaken to point of collapse after about 6 hours. Worsens in the summer heat, can't last very long at all.

* Muscles seem to stiffen in arms, fingers, legs, feet. Does not feel like cramps just stiff, rigid and non flexing. Comes and goes then just goes away.  This usually happens during the same time frame as the severe cramps. It is just different, not cramps.

* Cold spots in places on torso and arms and legs.  Lasts few minutes at a time and different places different days.

* Restless leg continues and is pretty much a nightly occurrence

* Ticks and jumping muscles happen randomly.  Happens two or three times a week.

* Coordination problems remain, don't seem to be any worse about the same as last year.

* Continue to have shingles 1 to 2 times a year.

2001-02 (age 47-48)

* Legs give out more quickly and become weak if I walk or stand for very long periods of time. This problem only worsens with every year, leg weakness is present everyday and progresses during the day.

* Problems with inside of ears itching, nothing helps.  Keeps me awake.  Happened almost everyday for a week and  then went away. Came back every couple of months with the same intensity and duration.

* Arms feel extremely stiff after lifting even not so heavy things. Tremble after lifting.  

* Worsening episodes of cramps and that rigid stiff feeling in arms, legs, fingers and toes. Happens every evening one or two weeks during the month.  

* Pain and weakness in both hips and knees, pain not quite as severe as when it first started.  

* Cold spots in places on torso and arms and legs. Lasts few minutes at a time and different places different days.

* Afternoon fatigue seems to be worsening especially if I have been overly warm during the day.

* Heat tolerance lessening, can't stand to be outside in the sun like I used to.
* Restless leg almost every night

* Started having boughts with tremors in hands, arms and having a bouncy head, started in 2002. Symptoms last about a week then go away.  This happens 6-8 times a year.

* Ticks and jumping muscles still present with same frequency.

* Coordination about the same.  Had couple of short episodes with loss of balance and falls in 2002.

* Continue to have shingles 1 to 2 times a year.

2003-05 (age 49-51)

* Leg weakness, pronounced with heat or exertion

* Getting harder to hold my arms up to roll my hair, takes me forever cause I have to rest my arms so many times during the process . Always weak and shaky after using them, even if lifting light weight items.  Long recovery time after weakness occurs.  Everyday happening

* Worsening episodes of cramps and that rigid stiff feeling in arms, legs, fingers and toes. Frequency of problems about the same, just more painful

* Early 05, started having sever pains in right elbow.  Lasted for months, effected movement of arm

* Cold spots appear about the same as when they started

* Still having boughts with tremors in hands, arms and having a bouncy head.  Symptoms still last about a week then go away. This still happening 6-8 times a year.

* Tolerance of heat is lessening.  Feelings of weakness seem to happen if I get too warm.  Still unable to take hot baths or showers, if shower is too hot I don't have enough energy to dry off, have to sit down.

* Fatigue getting worse, seems like I am always tired.  Some days feel like I could go to bed at 2 p.m.

* Restless leg the same

* Eye twitch started in 2003, no pain just twitching.  Feels sometimes like a muscle spasm in my right eye

* Cutting grass on riding lawn mower in summer 2004, temp outside in the high 90's.  Suddenly had a problem with my right eye, kinda like looking thru water.  Couldn't see out of this eye at all, took most of the rest of the day to clear up.  Continued to happen anytime I got overly warm.

* Itching in ears continues, duration longer and happening more often

* Ticks and jumping muscles still present with same frequency

* Continue to have shingles 1 to 2 times a year.
* Feel sometimes if I am walking crooked. Trip a lot. Not very coordinated, always running into doorways or bumping into things.  Keep bruises all the time from bumping into stuff.

All symptoms listed from 1990-2005, as close as I can remember, came and went.  I did have months with no problems and carried on as usual.  The only constant problems were the RLS, fatigue and problems with arms, they became an everyday occurrence.

2006 (age 52)

* Start having extreme fatigue around lunch time, doesn't matter what level of activity I have been performing.

* Still having problems with my right eye.  Slower to clear up after each episode.  Seems to have a film covering. Clears up eventually, but stays blurred longer each time this happens.  Usually happens when I get hot.

* Itching in ears continues, but happens everyday now, never goes away.  Some days are worse than others, but always there.  

* Started to have ringing in my ears, doesn't happen everyday but noticeable often.

* Don't even like to go anywhere where I have to walk much, legs wear out quickly.

* Heat tolerance non existent.  Get so weak have to sit down or fall down. Always have horrible muscle spasms after I have gotten too warm.  

* Arms go numb while typing or writing.  

* Weakness and stiffness in arms worsening. They feel just really tight and heavy a lot.

* Still having boughts with tremors in hands, arms and having a bouncy head.  Symptoms still last about a week then go away.  

* Cold spots still come and go

* In July, started with a stinging feeling in my feet, lower legs, hands and arms.  No amount of scratching relieves the itch, no creams or lotions relieve, even used a cortisone cream with no relief. Happens sometimes every day for a week, then subsides, only to come back.  Itches so bad you want to scream, keeps me awake at night, it's an awful feeling.

* Have new electrical shock feeling on random areas of limbs and body.  Happens at least once or twice a week, usually comes and goes all day.

* Random pain over entire body.  Sometimes sharp and lasting a minute or two.  Happens every day, off and on all day.

* Restless leg continues

* Continue to have shingles 1 to 2 times a year.

* Starting to have problems with urinary urgency, must find restroom at first indication or sometimes don’t get there in time.

* Worsening episodes of cramps and that rigid stiff feeling in arms, legs, fingers and toes. Happens at least 4 or 5 times a week.

* Coordination not what it should be.  Feel like I’m walking crooked at least half the time. Can't walk on uneven ground cause I will trip and fall. Stairs and escalators are to be avoided.

* Stumble often, trip easily and have had many falls.  Sometimes it is like I have stubbed my toe which causes me to lose my balance and I fall.

* Have dizzy spells that just come on unexpectedly and quickly.  Sometimes even when sitting not doing anything.  Happening more frequently every month.  On days when this is happening it goes on all day on and off.

* Eyes twitch.  Have some pain in eyes when looking to left and right. Seems to be happening more frequently than when first started.  Sometimes right eye feels like I am having a muscle spasm in my eye, especially when I move my eye around

* Ticks and jumping muscles still present coming with more frequency, happens almost everyday

* Starting to notice my attention span is not good.  Always been a muti tasker, but unable to focus lately. Always been one to get the job done, but find myself putting off even menial tasks that previously would not even given a second thought, would have just done it.


2007 (age 52/53 in Nov.)

These problems are an everyday thing.  Some days more severe than others, but always present.

* Fatigue has worsened.  Wears me out to go to the grocery, am no good for the remainder of the day.  Even if I get a good nights sleep, I will wake up with an overbearing tiredness.  Sometimes the fatigue is so acute I can't even explain how I am feeling, except, I feel like I don't have the energy to even breath.

* Legs some days will not work.  It is a conscious effort to walk from one place to the next. Feels more weak and just nonresponsive

* Stiff, rigid episodes continue in arms, legs, fingers and toes. Have started to have the RLS feelings in my arms, very annoying.  

Sometimes my fingers get so rigid that I can't bend them for minutes at a time.  Fingers will go stiff when I am trying to peel potatoes or cut up veggies.  Dexterity in hands really bad.  Always dropping things, can't open jars. Have trouble writing.  

* Memory and concentration have gotten markedly worse since first of year.  Can't carry on a decent conversation because I can't think of the words to use to complete a sentence. I sometimes just loose a complete train of  thought.  Doing this timeline has been extremely difficult, I will remember something but I will forget it again before I can get it typed.  Have to take many breaks while typing, as my arms are weak and wear out easily.

*Have trouble with transposing letters, never had this problem until this year.  Happens every time I am typing.  Always been very accurate typist.

* No tolerance for heat.  If I get too warm I have to sit down.  Saturday, July 21, went to Lowe's with husband and started getting a little warm, didn't want to disappoint him, yet again, so I tried to stick it out while he shopped.  Lasted about five minutes more and had to leave him shopping and go to the truck, almost didn't make it before my legs gave out

* Eye twitch and pain becoming more frequent. Muscle spasms in right eye almost every day

* Right eye blurred, never completely clear, left eye gets blurry quite frequently, but always clears up.  Having more frequent occasions of the "looking through water",  in right eye and has also started in left eye.  When this happens I just have to lay down and close my eyes because I cannot see to cross the room.

* Can't remember a day this year that my arms have felt normal. Some days they feel as though they weigh 200 lbs each.  I have had to stop with this paper many times to rest them before I can continue.  

*  Ringing in ears constant, itching constant

*  Cold spots still come and go

*  In July started having pains in my rib cage, mostly on the right side, but has a tendency to encompass entire midriff.  Sometimes pain is awful and feels like a tight squeezing, which makes it hard to breath.

* Sensations from lower neck, down spine, sometimes travels to waistline. This has been constant for the entire month of July and still present.

* Electrical shocks still present and occur more often

* Burning, itching in feet, legs, hands and arms happening more frequently with no relief.  Nothing helps when the sensations start, it is totally miserable.

* RLS continues

* Problems with urinary urgency continue, sometimes just can’t control. Up and down many times during the night.

* Started having a problem with bowel control, just like urinary problems, I have to find a restroom quickly at first indication.  Doesn’t happen all the time, but more than I am comfortable with.  It happens mostly in the mornings.

* Coordination is worse than last year.  Can’t even walk at a fast pace without falling. Think it is a combination of the weak legs, fatigue and my coordination.  Feeling of walking crooked happens almost everyday.

* Severe muscle spasms.  Almost everyday occurrence, severity the only difference.  Legs, feet, hands, arms, back, midriff, basically everywhere!  At times the pain caused by these spasms is so bad I want to scream out loud.  I would rate the pain a 10 on a scale of 1-10, and sometimes even higher than that.

* Still having dizzy spells that just come on unexpectedly and quickly.  Happens everyday.

* Still having boughts with tremors in hands, arms and having a bouncy head.  Symptoms still last about a week then go away.  Has happened about every couple of months this year.

* Pain in places like shoulders, elbows, knees, hips, ribs, ankles became severe in July/August. Different places different days.  When pains start in certain area they last a couple of days without relief.

* The feeling of bugs crawling all over me.  This happens most everyday, but I sometimes get a week or so break between.  Worse place is my face/head, but some days it is everywhere. Doesn't itch, just feels like something is crawling on me, very annoying.

* Over reaction to noises or loud voices.  Someone can close a door a little hard and I jump out of my skin.  Can’t tolerate any kind of loudness, whether it is a voice or closing of doors, etc.


2008 (age 53)

As of the date of October 3, 2008 my symptoms continue much the same as 2007.  The worsening symptoms being my fatigue, eyes, cognitive ability, urinary & bowels, legs/feet and arms/hands.

Fatigue:  No relief from the overbearing fatigue.  I do have some days that I can accomplish things first thing in the mornings, but by 10 am I am unable to move.  Even if I just do normal everyday things such as wash cloths or vacuum I am wiped out completely.  

The months of July, August, September, and thus far in October,  have been some of the worse fatigue I have ever experienced.  I wake up with 0 energy and have to fight to do anything.

Crawlies:   Episodes of something crawling on me have become more frequent.  Feeling it everywhere, but still face and head is the worse.

Eyes:  Eyesight is worsening and feelings of muscle spasms/jerking in my eyes is more frequent, especially since the spring and summer and the arrival of warmer weather.  Still having trouble with the "looking through water" effect in both eyes, right one is the worse, happens when I have gotten too warm.

For about 2 weeks in September eyes were so blurry and painful I couldn’t function.  Film over eyes would not clear and even looking at computer monitor or TV was an exercise in futility, couldn't focus.

Have started seeing small shadows.  Example is like walking across a room and see a small shadow on the floor, think it is a spill, but when checking there is nothing there.  Seeing things out of the corner of my eyes, like something darting across the room, but nothing is there.  

Legs/Feet:  Worsening of legs to the point of days unable to walk without struggling.  Hard to walk even inside on carpet, but almost totally impossible to walk outside on uneven ground.  Find that I cannot walk through the house if it is dark, lose all coordination.  Never a day without walking difficulty.  

In the month of July started noticing cold spots on the bottoms of my feet.  Example:  walking across a room and feeling like you have stepped in a small spot of something wet, but nothing is there.

Entire month of Sept., tops of thighs hard as rocks, never lessens.  Feel stiff and inflexible.

Severe pain in my feet, worse first thing in the morning, making it almost impossible to walk.  Worsen the month of Sept. to the point of not being able to walk for the first hour or so in the mornings, just too painful.
Heels of both feet are like this and when sitting or laying down, they become numb.

Muscle spasms in feet that pull my toes in all directions, very painful.  If I move my big toe it causes all the toes to go crazy.

Numbness in legs from knees to ankles.  Will start with pain and then turn to numbness.  This is an everyday thing and has been for the last 6 months. Left leg is worse, stays numb all the time from knee to ankle, mostly on outside of leg.


Month of Sept. had extremely painful muscle spasms, caused loss of sleep.  Most days, even when sitting, I could barely move and it would cause a spasm/cramp feeling that was very painful.  Not only happened in legs and feet, but also up and down my back.  

Arms/hands:  Worsening of the feeling of RLS in my arms, weakness more pronounced.  Seems that the muscles in my forearms stay tight and tensed 24/7, they feel hard to the touch and so weak I can hardly hold a drinking glass.  Constant muscle spasms, they seem to never stop.  

Hands have become almost unusable, can't write, can hardly type, can't turn pages of books, drop everything I touch.  No strength whatsoever in my hands, they just don't work.  Fingers will lock straight at times.

Have noticed in the last six months that my ring and little fingers on both hands are always curled toward the palm of my hand and are sometimes numb on waking in the mornings.

Have random pains in arms, also cold spots.

Urinary/Bowel:  Have become almost house bound at times as the control of my urinary and bowel functions have become almost nonexistent.  It is an everyday thing with the urinary problem.  The bowel problem usually comes about every couple of months and lasts a week or so.  I have no control of my bowels during this time.

Dizziness:  I have had sudden dizziness over the last couple of years, even while sitting.  September and to present, having the dizziness more frequently.  Seems worse upon awakening.  Don't know if it is caused by the worsening of my eyes or has some other explanation.

Cognitive Abilities:  Have weeks where I cannot have conversations because I can't find words.  Names are completely beyond me. In conversation just this week with best friend of 28 years, going to ask about her son and couldn't remember his name.

Have had a couple of incidents of the following;  in the grocery, look up, temporarily stunned to find I do not know where I am.  I know I am in the grocery, but at that moment I didn't know how to go to get out.  Lasted a couple minutes.  

Same has happened while driving; I'm in familiar surroundings I travel daily, but for a minute or two I just don't recognize anything, and wonder where I am and where I am suppose to be going.

Comprehension of conversation, reading materials, etc., very bad.  I can't seem to comprehend even the simplest explanations of the most simple procedures.  Even having a hard time reading and using cooking recipes.  Find myself even forgetting how to cook things I've cooked hundreds of times, can't remember what ingredients go into recipe.  

Can't get anything accomplished because I have no attention span anymore.  Always been very organized, now just forget everything.  Short term memory, comes and goes.

Don't trust myself with the check book as I have made mistakes in the past few months.  Spent 12 years as bookkeeper for our business, handled millions of dollars a year with no problems, until the last 3 years.  

When sending emails or doing this journal I will find that I have substituted words that make no sense to what I am writing, and also will use a word like hear, when it should have been, here.  These are things I have never done in the past.  

I keep a dictionary by my computer because sometimes I can't even spell the most simple words.  Some days it is so bad that I can't even look up the word in the dictionary because I don't know where to start to look, other than maybe the first letter of the word.  This is not me, I am/or was, an exceptional speller.

Example:  Needed to type the word "least" the other day and could not for the life of me remember how to spell it, didn't even know how to look it up in the dictionary.

Have days where I just feel like I am living under a fog.  Can’t think, just feel dazed.  This happens mostly if I have been active or stressed in previous days.  Being active, for me these days, only means maybe a trip to the grocery.

Find that I cannot walk through the house if it is dark, lose all coordination.  Cannot walk outside at night even with flash light, l lose my balance and coordination.

It has taken me over a year to complete this timeline and I am sure I have forgotten some things.

Pain.  Not a day goes by that I am not in pain, some days it is unbearable.  I think some of the pain is from spasms and that rigidity of my muscles, but mostly it is just constant, unrelenting pain in different parts of my body on different days.

Electric type pain from base of neck down to waistline.  Sometimes radiates across shoulders.  

Pain from spasms in back, everyday, some days worse than others, but always there.

Just recently, month of September, started having sharp pains under my fingernails and toenails. Doesn't happen everyday, but at least a couple of days every week.

  

I don't know what has happened to me, but I know that my symptoms continue to worsen and without a diagnosis and treatment, my future does not look good.

To go from a very active, hard working, strong, highly intelligent and very organized person, to who I am today, has been devastating.  I want to be a productive person again.  I want me back, the sooner the better.