Multiple Sclerosis Community
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Avatar universal


I have always been a very physically active and hard working person, sometimes doing what was considered men's work.  Was taught by my father to do what needs to be done no matter how difficult.  I was an avid horse person and took up running in my late teens.  Have always stayed active even when pregnant.  Have never been one to sit around and watch TV or be a couch potato, always needed to be doing something active and physical.  Always considered myself smart and quick witted, always sharp about decision making.

Have been a residential home builder with my husband since 1996.  My duties are anything and everything that needs doing, from on the jobsite to paperwork in the office.

1970-72 (age 16-18)
* Restless leg first noticeable.
* Had problems with my jaw locking. This would last a couple of months then go away.  Probably happened 2 or 3 times a year from my sopomore year til graduation.

1980 (age 26)
* Found to be colorblind during physical for job - referred to as red/green deficency

1990-94 (age 36-40)
* Unusual leg weakness if hot or tired
* Arms weak, can't hold up to fix hair
* Boughts of RLS worsen 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.

1995-96 (age 41-42)
* Pronounced weakness in legs after excercise 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 - July 4th, 1996, drank one drink and felt really bad like it drained all my energy
* Only pain meds I can take are Excedrin or Tylenol, if I take anything else including cold meds I have a severe attack of restless leg, sometimes if I take Tylenol for more than a day or two it will cause this too.
* Restless leg problems a minimum of 20 days a month.  Sometimes severe and causes loss of sleep.

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 interupt sleep and is almost a nightly problem

1998-1999 (age 44-45)
* Noticeable fatique starting in late afternoon.  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.  Husband would have to help me out of tub, so I just started to take showers.
* Restless leg same

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.
* 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. Doesn't happen everyday.
* Restless leg continues and is pretty much a nightly occurrence
* Ticks and jumping muscles happen randomly.  Happens two or three times a week, lasts about a month.
* Coordination problems remain, don't seem to be any worse about the same as last 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.  Frequency is 6-8 times a year
* 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. Doesn't happen everyday.
* Afternoon fatique 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.
* Went to GP to try to find out reasons for symptoms.  Told I was just old (I am only 47) and that from my pap smear he could tell that I was going through menopause.
* 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.
7 Responses
Avatar universal
2003-05 (age 49-51)
* Leg weakness, pronounced with heat or exersion
* 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.
* Fatique 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 lights flashing and a prism like problem with my right eye, kinda like looking thru water with bright lights streaking thru it.  Continued to happen anytime I got out in the hot that summer.
* Itching in ears continues, duration longer and happening more often
* Ticks and jumping muscles still present with same frequency
* Feel sometimes if I am walking crooked. Trip a lot. Not very coordinated, always running into door ways or bumping into things.  Keep bruises all the time from bumping into stuff.

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.  No good for the rest of the day after getting hot, fatique and weakness extreme.
* Arms go numb while typing or writing.  Happens everytime and feel extremely weak after the feeling comes back
* Weakness and stiffness in arms worsening. They feel just really tight and heavy alot.
* 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.
* 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 everyday, off and on all day.
* Restless leg continues
* 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
Avatar universal
2007 (age 52/53 in Nov.)
Most of 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 tireness.  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. 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 as my arms and hands go numb when I am typing.
* Have trouble with transposing letters, never had this problem until this year.  Happens everytime I am typing.  Always been very acurate 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.  Wiped me out for the remainder of the day.
* Eyes twitch and pain becoming more frequent. Muscle spasms in right eye almost every day
* Right eye blurred, never clear, left eye gets blurry quite frequently, but always clears up.  Having more frequent occasions of the prism lights 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 it is hard to breath.
* Sensations like buzzing or electricity from lower neck, down spine, sometimes travels to abdomen. 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.
* Restless leg 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.
* 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 days without relief.

I have gone to GP’s on many occasions over the years, only to be told there is nothing wrong with me.  I have had blood tests, etc to no avail.  Last visit was July 18.  Blood tests results were low B12 & folic acid. Started on B12 injections and oral folic acid.  Only changes noticeable since starting medication is more pronounced and more frequent tremors.

I have always accepted the diagnosis and went on about my life.  I have never been one to dwell on health matters, I have always just taken every thing in stride and chalked things up to overexertion or some other common thing.  My health is so deteriorated at this point that I have to find out what is wrong with me and do what ever it takes to feel better.  

My life has deteriorated so much in the past 2 years that I hardly recognize who I am.  I have always had a great mind and now I can't focus on anything. I have gone from someone who could stand side by side with my husband and build a house, to someone who doesn't even want to go outside if it's hot because I know I will get hit with extreme fatigue to the point of not having the energy to take a breath.  I have gone from someone who loves her gardening and flowers to someone who doesn't have the energy or the strength in her arms to even pull weeds and wants to cry when she sees how her once beautiful landscape looks awful.  I have gone from someone who loved to go places with her family to someone who doesn't have the energy on most days to go through the process of dressing up to go anywhere.  I have gone from someone who took at least 2 baths/showers a day to someone who doesn't even have the energy to take a quick shower even once a day.

This is my body and I have lived in it for almost 53 years, no one knows me better than me and I know that something is terribly wrong.  I just want to find out what is wrong with me so that I can move forward with my life and at least have a diagnosis so that I know what I have to do to move forward.
Avatar universal
Have you been DX with MS. I have all the same symptoms you experience. I will be going next week for a MRI.  Rockettman
Avatar universal
No I do not have a dx. I do not have health insurance at the present time and I just keep putting off having an MRI cause I am afraid this is MS.  Don't know how I would pay for the meds or all the tests everyone talks about having.

Been thinking strongly this week about just trying to get my GP to set up the MRI, I know I have got to get started trying to find out what is wrong.

Good luck with your MRI and I hope everything goes good for you.

Avatar universal
Avatar universal
I have many of the same symptoms, my weirdness in my head has now turned into some sort of syncope, or passing out. My eye doesn't twitch - it waters constantly and itches - just one eye. I was dx with fibromyalgia but have major problems with muscle weakness, and i have twitched for years. Constantly twitching  - 24/7. I have had all kinds of tests and no dx - except syncope & fibro and arthritis.  My itching watering eye drives me loopy. It's not red, it's not infected. My ears itch terribly. I haven't had a cold or flu in years, but I deal with this ****. I have a lot of nausea and bowel problems. I feel like I'm falling over all the time.  My eyelid is drooping (no Myasthania Gravis or whatever it is). I was told I have a spot on my left petrous apex but that it is a benign situation. How the hell do they know?  Anyway, just wanted to let you know you're not alone - p.s. I'm a 46 year old woman - have had one child - an artist/musician and with a history of depression.  This has often been diagnosed as anxiety, but I know better. Would anxiety make my eye droop?
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