First in a while

This is the first time in quite some time that I've felt the symptoms of MS. I mean, other than the fatigue.
Today, for some unexplainable reason, my extremities have been tingly off and on. Not anything to worry about, just an update and so I can remember the occurrence.

Body Ache

My body must have known to wait till after today. I've been fighting off Lhermittes for a while now, rubbing my neck and readjusting. My legs have been getting tingly more often. But today, once I came home from the last of "Harvey"... I could feel it.
It was a quick set in. My eyes are having problems even focusing, and my hands are taking their time typing (or I should say retyping), my mental focus is also problematic, and my body is tingling all over... not in the good way.
My muscles feel tight, and I know my neck is. But anything that isn't numb, tingles. At least my body was kind enough to wait till I was done with things.

Spasicity

It's been a while since I've written, but I had an episode of Spasticity. This is the second time in 10 days or so. July 4th was the last time. It's only happened one other time; I was still on Avonex and it was sometime last year (it's documented in my blogger under that Electrical feeling, because that's what I could describle it as, but the last time I had it Chris helped me figure out exactly what it was... Spasticity, because the muscle hypertonisity. We've treated it briefly with b-12, and waiting on what the doctor could recomend, but that's about all we can do for now. Below is what spasticity is:
Spasticity or muscular hypertonicity is a disorder of the body motor system, and especially the central nervous system (CNS), in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech. Depending on severity, the person with the spastic muscles may or may not feel it. However, it can often be severely disabling . The human motor system is not always linked with the sensory systems, nor the voluntary-muscle systems.
Symptoms may include hypertonia (increased muscle tone), clonus (a series of rapid muscle contractions), exaggerated deep tendon reflexes, muscle spasms, scissoring (involuntary crossing of the legs), and fixed joints (contractures). The degree of spasticity varies from mild muscle stiffness to severe, painful, and uncontrollable muscle spasms.
The condition can interfere with rehabilitation in patients with certain disorders, and often interferes with daily activities. Over the years, it may increase in its effect, so more severe treatments may be needed later. Cold weather and fatigue can trigger spasms more severely than other times. The constant spasms can lead to muscle fatigue so periodic rest is required but often difficult to achieve. Multi-tasking (such as walking, talking, eating and other activities) can also trigger more severe spasticity.
I guess I really do need a break; but from what? from what? London, here I come. I feel bad because Chris is the one with a job, I'm still trying to get one. The house is now in beautiful shape, but that's only because Patti came over and did so after my attack today.
I've never had an attack durring the daytime, I was in my car luckily. But it felt so public. I couldn't stop shaking, and crying. It hurt so bad.
Luckily Chris was working close. I could barely get words out, it came on so fast. I just need to rest.

update, not to worry! for myself

Legs from knees down, and right side from ribs down, are needle-point numb. This means that they are no longer tingley numb, which is a good thing, because that gets annoying. But I do have to watch out because I can break a toe without knowing it because I won't feel it. Because it's all in my legs it really throws off my balance; it's like the world is one of those giant bouncey castles... and I'm trying to get through it. So, of course I look very drunk doing my daily tasks. My right leg is just very warm all the time, like an internal heating pad. Anything cold just feels wet, it's very odd. Sometimes I feel pain if the muscle is flexed.

What Living with MS feels like

If you're like me, sometimes it's hard to explain to people what different MS symptoms feel like. Below is a great list that I had e-mailed to me that makes it a bit easier to explain it to people.

When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket - preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat> yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
one...Bzzzzzzzzzzzz zzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person
without MS would feel bad, now add all of the above symptoms - welcome to our world.

Then Finally...

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

Sometimes Late at Night

Sometimes, late at night, my legs suddenly feel like they're on fire. Almost immediately I start to twitch. The pain is so bad, My legs are under the crushing pressure of each other. The burning is so immense that it's actually cold instead of hot, and I start shivering. My torso feels like it's got a lasso around it, tightening and tightening, constricting my lungs and causing a pain in the middle of my back (like lying on a baseball with rusty nails). But it only happens when I'm trying to sleep late at night, not during the day, so we're still trying to figure things out.

Tingley Hibi-Jibies

Okay, let me try to describe to you what the last few weeks have been like for me. Have you ever had an ant crawling on you (not bite you, just crawl on you... or maybe even a spider)? Okay, imagine that all over your body... not just one ant, though... millions... billions... gad-zillions! And not just over your body, but inside your body. I know not just ew, but creepy. But that's how my body feels right now, and has felt, progressively, for the past few weeks. At first it was just at night keeping me awake until something would kick in, and now it's anytime my body is still (sitting, standing, laying down, etc). Also, at first it was just in the legs, so I thought it was a case of RLS. But this week it has progressed rapidly up my trunk. I've quickly sleep medicated myself out, so now the pills don't work on me anymore. :( . I kind of equate what I feel to visually what the TV does when it has the black and white static. Anyway, just an update on the MonSter inside.

You Know You Have MS When

These quips actually originated from a posting in the MS community at Daily Strength.

You Know You Have MS When:

Your four-year-old is better than you in memory games.
You face-plant into the floor and only afterwards you think, "I'm falling!"
You tell your daughter to go to bed (in the garage) at 9 PM.
You're on the phone with a dear friend and can't remember who the heck she is.
You pay the phone bill twice because you can't remember that you paid it in the first time.
You forget to pay the electric bill and your power gets turned off.
You realize you sent the electric bill payment to the phone company.
You call someone and by the time they answer the phone, you forgotwho you called.
You try to grease a skillit with 409 instead of Pam.
The bottoms of your feet are numb and you realize you've been walking around without shoes on because you can't tell the difference.
Your dog cleans up after you.
You attempt to bake cookies, but you use wax paper instead of parchment paper. Even worse, you can't determine what's wrong until your cookies start to look like candles in the oven. Worst of all you have to call your mom to ask if you are able to cook in the oven with wax paper. She thinks you've lost your mind because you've been baking cookies on parchment for years!
You dice your fingers while washing knives in the sink. The water turns red and you haven't a clue why.
It's easier to use Charades because you just can't remember the words.
You hold a nail with one hand and a hammer with another, but by the time you're ready to finally swing the hammer you've dropped the darn nail... again.
You call your daughter to ask for directions and realize you've already arrived at the location in question.
You attempt to move your index finger and your pinky finger moves instead.
You wash your hair with conditioner and THEN was it with shampoo.
You try to get your key into the door to your apartment. You jam and slam and swear! Your neighbor opens the door from the inside to help you and you realize you're breaking into the wrong place.
You go to the store, turn around and realize you're lost. You have to call your 16-year-old to come and find you (or you call your husband's cell phone just to hear it ringing like a homing device).
You have a college education, but when your doctor asks you to spell a simple, four-lettered word, you're speechless. Of course, you can easily shout out a four-letter word in reply (not necessarily the same one the doctor wanted to hear).
You invite your guests to sit on the cake while you serve the couch.
Your mom seeks out advice about Social Security from YOU.
Buttons are useless, zippers are worse, so your whole wardrobe turns into elastic waists or Velcro.
You have become jealous of how few times pregnant women go to the bathroom.
You use body soap instead of body lotion and can't figure out why it won't rub in.
You map out everywhere you go based on how many public restrooms are along the way.
You have to ask the dog where his leash is.
You fail a test for intoxication and you haven't had a drink (YOU try to walk a straight line with MS!)
Your nine-year-old tucks you in bed and kisses you on the nose.
Your 80-year-old mom jumps up from her seat and offers it to you.
You point your keyless car entry button at the front door of your home and wonder why the door isn't beeping.
Your Neuro asks you to look to the right and instead you look to the left. Or worse, you move your whole head instead of just your eyes.
You start to take your meds and can't remember if you already took them. So you hunt to find the pamphlet that comes with the prescription so you know what to expect if you accidentally overdose.
You do exactly what the instructions on teh shampoo bottle read: Wash, rinse, repeat. But, you only do it because you can't remember what parts you have already done.
You go to work with one shaved leg because you forgot to shave the other. The next morning you decide to shave the other leg to play catch-up, only to find out that you re-shaved the same one again.
You sleep in your work clothes because you're just too darn tired to change into PJ's and then back into work clothes the next morning.
Your 70-year-old father offers to let you borrow the cane he used after knee surgery, because it looks like you need it more than him.
One of your students (worried about your eyesight) tapes paper over the overhead lights and you think you've forgotten how to operate them.
You refer to swallowing a pill as swallowing a pillow.
Your child's teacher corrects YOUR spelling in a note to her.
You get excited when the weatherman says to expect "unseasonably cool" weather.
You show up to your job from four years ago, walk in the front door, and only then realize that you've shown up at the wrong employer.
And ond of the best ways to know you have MS is when your teenager thanks YOU for doing some of the cooking and cleaning!

MS Up

So I took an IV to the hand... ouch. Chris took it out on Monday. I'm trying to recoupe from it all. Doing well. I'm trying to recoupe about everything, but it's hard to back track right now. KP is going through the same thing with steroids right now, so it feels good not to be alone on that sort of stuff. It was really hard dealing with stuff with that in my system so hard. I was not a happy person, I just felt tired all the time. I'll update you guys in a while. I'm still recouping.

Rubber Gloves

My hands are doing that no-feeling glove thing it does. On my left it's from the pinkie out, on my right it's from the thumb out. My shoulders feel like they've been sunburnt. My legs are not cooperating, I can't stand up for long periods of time. I'm so tired that I don't like holding myself up for long periods of time. I wish I was at home in bed. I really just want to sleep.
You know how it feels when you lay on your arm and it falls asleep? That's how my arms feel most of the time all over, except the inside ridge. I feel so weak. I just want to sleep. I'm very close to letting everyone out early today, but I know it'd be wrong. 2.5 hours to go... urggghh.
Chris thinks that the symptoms flared up because I started taking Alli. I think it's because all the stress we've had lately. We both thought it was the ring, because right after we got a sizer for it was when I started noticing it. But I've had to go without my ring for a few days (which make me very nervous and unhappy) to double check that theory. I figure we'll cut everything out and start introducing everything one by one slowly. The problem is that it takes a few days to a week for symptoms to show up.

MS symptoms, come and feel em

This site is a great site that everyone should go to and see a basic playout of MS makes you go through.


http://www.ms-gateway.ie/understanding-ms/ms-simulator-35.htm

MS Update

This last weekend hasn't been bad, but it's been an odd one. Katie and I went bowling on Friday, but I got so weak I couldn't bowl my normal 10 and 11 pound balls. I had to wearily bowl a 9 pound, which is the smallest ball they allow adults to bowl with. It wasn't a problem except I was so off balance with everything my score was cut in half. I kept trying my luck with the heavier balls, but I stopped after one point where I just sat down and pushed the ball down the lane.
It was a weird fatigue, nothing major. Just felt odd because of the weakness.
And since then I've had balance problems that eventually led to the last few days of drop foot. It's made me recieve a number of looks and comments from fellow workers. Basically if I'm not over-compensating for it by marching everywhere, I look like I'm drunk.... or drunk marching. It's been interesting, but it's keepin my balance and feet from dragging that's more on my mind than any comment.
It was worse on Tuesday when my legs felt like they were asleep... it's more so in my right leg.
I'm in debate about a chiropractor or not for this job.

Oh Yeah

This weekend... Hmm, it's actually fine. I've been really tired, but manageable. Chris and I went and say Live Free or Die Hard today, that was fun.
My shot burned when he gave it to me. It must have hit a nerve, or something. And I had a weird reaction to the adheisive on the bandaide... really weird. Chris says it's like hives. It's kind of like when you get too much sun and you get the blisters... or pimple like stuff. Blisters, I guess... it itches ever so often. Very odd. Other than that, hmmm... left hand loosing sensation. Dizzy, and loss of balance, but fine otherwise. Just the shot stuff is odd.
My babies are fine and loving that I'm laying down with them.

Oh, I knew I forgot something! Besides the obvious memory loss (more to blame on the loss of sleep), is this bubbling feeling I have in my right thigh, about midway up. It'd a really odd sensation. Other than that, I've had a lot more muscle spasms/twitching and my balance & gait have been off... all of which can be due to the sleep thing, I just don't know about the bubbling feeling. A bit of incontinence, yuckage.

Fatigue

Excrutiatingly fatigued... both today, yesterday and the day before... especially today. I am sooo tired, but my body's awake, it's mainly my eyes. MS sucks. I mean, I can keep working and whatnot, I'm just really tired. Urgh.
Also, my feet had kind of lost feeling the other day, not tingly, just not anything. My hands were similar when I was taking my nails off on Thursday. Now they're just tight in my fingers (the usual suspects: outter ones more so than inner.
Now, though, my feet are really sensitive, so all those days without shoes, now I need them, but I still want to walk around without them.

For a Walk

I took Pixi for a walk today... it was fine, except for the fact that my legs felt like lead weights had been strapped to them. That was my biggest note to take it easy. It took a while me to get where I could feel comfortable walking, so I got to the point that if I just kept walking I was fine... otherwise everything was well.
It was cute because all the neighborhood kids know the dogs so they just came right up and were calling her name and all. It was funny, but it made me really tired in the end.

Irritable

Thank you everyone for your concerns, I'm doing well, just really busy.
This weekend was reasonable. On Friday I had the day off and loaded up boxes and boxes in Chris' vehicle and ran back and fourth between houses. Saturday, I worked for a few hours and then went home. I was really irritable the whole day, but Chris still had me move stuff. I got my shot that night. He also had me moving stuff on Sunday, my day of rest. We only moved a couple of loads because I was really irritable, mainly due to bowels and having been moving for the past three days. Monday, I took care of some bank issued and (ba-ba-da!) moved boxes. I didn't get much moved that day, but Chris and I are close to empty in the other house, so... eh. Sorry, Chris that I was so irritable. I know I shouldn't stop until we've gotten everything in, but I get tired when I get hot and sweaty. Ugh.
Other than that, I've just been hormonally bitchy. Sorry folks. Hope everyone had a great Mother's Day!

Oh, yeah, I was supposed to, not for you guys to worry but for my memory, write about my numbness. Remaining in the hands, feels like a glove. A little bit in my back, in a weird stripe along the lengthwise of it. Off and on my legs have been understandably numb. I've been really shakey in the hands this weekend, mainly due to overexertion. That's the one part that really bothered me this weekend (besides being extremely irratable). The irritability is probably due to irritability throughout my body. I'm not sure which types of cramps hurt worse, constipation or menstration. Sorry, folks, I've said it once, and I'll say it again. This is for my use to remember stuff...
Like not having bowel movements and forgetting that this is not the week to be off the patch. Poop is usually a funny subject, but when you haven't done it in a few days it sucks. I am not full of shit about this subject, but I am on a physical level. I've done everything I can think of to personally have a bowel movement. I've had one every few days with little releif, mainly a lot of cramping ensues to do the stress I'm putting on my digestive track: everything from my low-lactos levels skyrocketing because of loads of ice-cream and cereal to choco-lax and extra fiber in my diet. Yuckieness ensuess... hopefully I'll stop getting this "shitty" cramping soon. It's not all the time, just when I try to go to the restroom.
Anyway...

Hands Out

It's weird about my fingers, they're no longer the rubber-glove numb. They're stuff, loss of sensational. But they still have a bit of tingle. I'm assuming it's a delayed feeling. They can't stop shaking and they bumble over the keys on the keyboard, despite knowing them very well. I really have to pound on the keys to make sure I'm really pressing them, and pressing backspace a lot because I keep messing up. The hands have been like this for a while now... so I'm hoping they get better soon. It's mainly kept to the finger tips and the pinkie and ring fingers down through the palm, mainly stronger loss of feeling in the right hand. Which is kind of cool, considering most of the stuff happens to me on the left side.
Speaking of which my left eye is not completely better. I think it is, and then it'll be like wearing a contact sometimes and the lens will shift... but it's my own eye! Sometimes it itches so much I feel like I'm scratching it right out of it's socket. Other times it gets only a little blurry, and ever so often when I check and things are a bit off (I know my right eye is doing major compensation for it right now), my vision is off... in both going grayscale and burriness of sight.
Also, my speech slurs easily if I don't watch it. I think my brain is dragging ass.

The past 4 days

Friday: Shot day... ouch! It burned so badly when Chris put the needle in! He immediately took it out, the site burned through the night. I ended up getting the medicine at another site because of the pain. It was raw/burning at that site for most of the weekend.
Saturday: An okay day. I slept through most of it. packed a little and did paperwork.
Sunday: had work at the box office, nothing big.
Monday: Had to call in sick because I was having major cramping. It woke me up at around 5:30/6 in the morning, so I was not happy. I had had a lot of milk products the night before, so either that or the fact that I hadn't had a major bowel movement in the last few days could have been the cause. I stayed home and rested most of the day. If I was't in bed, I was close to a toilet just in case... and nothing happened. :(
Today: I'm doing better, stomach's still uckie, but I did have a bowel movement today! (honestly, folks, if you don't want to know, don't read it) My hands still have a loss of sensations in the fingers. My legs feel weak and my balance is way off. I didn't feel like working today, but I'm glad I'm here. the backs of my thighs feel like they're next to the heater sometimes, but only sometimes.

This Saturday

.. Was painful. It hurt all over, I was very tired and achie all over. I'm so glad that it's only one day. My fingers, today, are still numb from the second nuckle down to the tips. Along the pinkie, it goes down to the palms.