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Old 01-07-2009, 02:31 PM   #1
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Join Date: May 2006
Location: Alberta
Posts: 99
Albertagirl HB User
Unhappy Feeling miserable

Hi all,

I still have no concrete dx of ms but Dr still suspects that is the cause of all my problems.
See him again next Wednesday and he will be referring me to a new neuro then so hopefully get something figured out this time!
Hope 2009 will be the end of my "holiday" on limbo island.
Happy new year to everyone by the way!!

I will cut to the chase and try to keep it short.
I have been feeling miserable for over 2 weeks now and only seem to be getting worse.
Started with headaches that turned into eye aches which I usually only felt behind the left eye but now in both.
Awful stabbing, aching, eyestrain type pains.

A couple days after eye pain started I noticed I couldnt read that well anymore.
My eyes had a hard time focusing, it wasnt due to blurry eyesight BUT was surprised to find that my eyes seem to be jumping somehow lately.
Hard to explain but it really feels like my eyes are jumping around, darting back and forth somehow and trembling.
If I try to read I find the my eyes will jump to a different line seemingly on their own and boy does that give me headaches!!!

Notice this is a lot worse when I am tired or if I am in a dimmer room.
Ok this wasnt the end of it, that strange trembling sensation of the eyes seems to have spread.
At first it spread to my face, my jaw kept trembling as did my lips and cheeks.
A few days later I felt it in my throat and at times was afraid to speak cause am afraid of sounding shaky. lol
You know how your voice shakes when you are really sad or very scared or nervous???
THAT is the same exact feeling that I get in my throat and eyes.

Now it has spread to my chest, stomach and it feels miserable
Why are my insides and everything trembling??
Not so much in the daytime altho I feel it mildly but really bad at night.
Lately I have been swaying and almost fell a few times cause am getting dizzy as well.

Ok this was accompanied the whole time with an increase in muscle spasms and twitching of everything!
Then I sometimes get this terrible feeling in the pit of my stomach that I cant explain as well.
You know the feeling you get when your are unpleasantly startled?
How your insides tighten up in an instant and you get that icky feeling in your stomach like it dropped somehow?? lol

Also for the past week my lower legs have been bothering me in a really strange way.
EVERY NIGHT my lower legs from knees down ALWAYS feel frozen on the inside but skin feels strangely too warm.
What the heck is that???
It is really like an aching numbness that really hurts BUT when I do touch my legs they are warm and actually are not freezing at all.
Alright so last night I had the smart idea to use a water bottle hoping that would help me sleep and relieve the misery somehow.

WRONG!!
I didnt realize until almost an hour later that the water was too hot BUT my legs never felt warmed up, the still felt frozen AND when I touched the bottle to my thigh?
OUCH!!
It was HOT and it actually scared me to realize that what was hot my lower legs only perceived as luke warm.

Now on to the last thing that scares me although these are not all my symptoms but only the most troubling and new.

The last 4 or so nights when I am really relaxed just laying in bed I have been having these "episodes" but have had them a couple times during the day.
Its like my mind drops somehow?
I dunno like all of a sudden it stops and I am lost feel really stupid and I panic trying to think where I am, whats going on and even how to speak!!
SCARES ME TO DEATH!!
I mean its really like losing myself or losing my mind for a few seconds at a time..


Please advise me on what these could be and if they will pass???
I am really worried about this now.
Has anyone gone through this before and will it get better or go away???
Please tell me Im not the only one!!

 
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Old 01-07-2009, 02:46 PM   #2
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Join Date: Sep 2007
Location: Kansas, USA
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Re: Feeling miserable

You are definitely not the only one who feels the way you are feeling. The symptoms do pass or should pass.

I know that it is scary when your cognitive functions begin to suffer. When your legs or hands are numb, the kitchen and bathroom become danger zones. When I needed heat, I used a heating pad set on low. While welding with my son, I remember I burned my foot with a hot piece of metal. I did not realize I was burned until I smelled it. It is just something you need to make yourself aware of each time you do something.

For my eye pain I apply acupressure in the area of the pain. This has helped me considerably.

Many of your fears may disappear when you get a final diagnosis. At this point, keep your journal of symptoms for the doctor.

 
Old 01-08-2009, 10:34 PM   #3
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Join Date: May 2006
Location: Alberta
Posts: 99
Albertagirl HB User
Re: Feeling miserable

Thanx for your reply msjayhawk!

I am not any better and actually feel a little worse as if it wasnt bad enough already.

Still suffering from the same symptoms and have new ones as well.
I have huge patches of numbness on my skin in random places!
Am so itchy but when I scratch its like chasing the itch cause it seems to move and other times simply cannot feel the scratching.

My skin is driving me nuts!
So itchy and no amount of scratching helps but I also have a mild burning sensation with it.
It really feels like you should see some sort of rash but there is nothing!

My right arm and leg feel so heavy and like Ive hit my funny bone. Painful, tired, numb and weak.

Also the last 2 nights have been misery!!
Having awful headaches still and now am nauseated and in pain all through the night.
The worst part is I am more awake than asleep but am aware most of the time of this disgusting dizziness.

Its like the whole world is moving around and I feel like I am stuck on some kind of horrible carnival ride.
I roll around to the right cause I am dizzy but it doesnt go away then I roll to my left side and its even worse!!

How in the world can I be so dizzy while lying down??
The most confusing thing about this dizziness is that I dont get it so much during the day only maybe 5 second episodes but rarely BUT the nights??
CONSTANT merry go round!!

The mornings are horrible, the afternoons am usually sooo tired and wiped out but the evenings are a nightmare!
After supper it usually hits all over again.

The twitches, muscle spasms, cramps, itching, hot and cold flashes, and weakness and shakiness!!
BLECH!!!

I am so close to tears.
I am sad, I am tired and I am afraid.....

 
Old 01-09-2009, 06:49 AM   #4
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Re: Feeling miserable

Some of your itching might be dehydration and dry indoor air. Have you tried running a humidifier and increasing your water intake?

Your fear, if not controlled will bring the pity party invites to your door. Please do not answer and tell the pity party invites that you will be refusing them entry into your life.

Though you do not yet have a definitive diagnosis, if you attack your current problem using the hypothesis of MS, maybe you can obtain a degree of control and sanity.

On those occasions when you are tired, you need to just nap. It is no use fighting and resisting what your body needs. Climb in bed with your book, keyboard, remote control, knitting, or whatever and just hibernate for a week or so. Afterward you can read through your journal and try to determine what might have triggered your problems.

Leave plenty of time to just 'veg-out' in front of the TV. Your brain can use the rest.

My worst vertigo happened while I was lying down. I thought I was going to spin right out of bed. When I felt like I was turning clockwise, I rolled my eyes counter-clockwise. Once my dizziness switched to counter-clockwise, I rolled my eyes clockwise. This worked for me. It did wear me out and I was soon fast asleep and no longer fripping the sides of my mattress.

I have found that for me, lying while propped up at a 30-45 degree angle has allowed me to get the best rest (and helped eliminate my choking sensation).

Try different things until you discover what works for you. Eventually, when you discover what works for you- BAM- you have your DUH moment. Remember you are uniquely created and as such, what works for you may be unique too.

Have no fear!!


 
Old 01-11-2009, 01:20 PM   #5
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Join Date: Dec 2008
Location: Hudson, NC
Posts: 35
Toni110364 HB User
Re: Feeling miserable

Hi Albertagirl,
I know how you feel. I have not been diagnosed with ms and the docs all seem to keep going back to my thyroid but after years of working to trying to correct my thyroid ( radiation, meds, doc appointments ) I am still having symptoms. I have been reading alot about MS lately and I am almost sure this is what I have. I have another doc appointment in Feb. so we'll see what they say then. I posted a message here a few weeks ago and read some of these message boards and what you are describing is exactly what I am feeling among other things. I haven't heard anyone mention the episodes you are having at night though and I thought I was crazy when this happened to me. I tried to explain it to my family and what I told them was just as I am laying there in bed relaxed and about to fall asleep I am suddenly startled and feel like everything in my body has come to a complete stop. I can't think clearly and it feels like I have lost control of my entire body and mind. It scares me to death. And about the feet --OMG sometimes my feet feel soooooooooo cold at night it just aches to the bone. I try to put them in hot water but it never works. I too have the eye pain and when I try to read my eyes jump all over the page. I thought something was wrong with my mind, like I wasn't able to control in my mind where to look with my eyes. Sometimes when I wake up in the morning my eyeballs feel like they are going to jump out of my eye sockets. Like they are just bouncing around. It only happens really bad when I first wake up. Another thing I have going on is my second and third toes on both feet are going numb. It happens quite often but I notice it mostly everytime I take a hot bath or shower. They will stay numb for about 30 minutes after then they are fine for a while. I have a multitude of other symptoms but I wont' get in to all of them. I just couldn't believe I found someone else who was having those "episodes" when trying to go to sleep. I hope you find some answers soon. Take care. Toni

 
Old 01-11-2009, 02:18 PM   #6
Junior Member
(female)
 
Join Date: Dec 2008
Location: Hudson, NC
Posts: 35
Toni110364 HB User
Re: Feeling miserable

Hi Albertagirl,
I know how you feel. I have not been diagnosed with ms and the docs all seem to keep going back to my thyroid but after years of working to trying to correct my thyroid ( radiation, meds, doc appointments ) I am still having symptoms. I have been reading alot about MS lately and I am almost sure this is what I have. I have another doc appointment in Feb. so we'll see what they say then. I posted a message here a few weeks ago and read some of these message boards and what you are describing is exactly what I am feeling among other things. I haven't heard anyone mention the episodes you are having at night though and I thought I was crazy when this happened to me. I tried to explain it to my family and what I told them was just as I am laying there in bed relaxed and about to fall asleep I am suddenly startled and feel like everything in my body has come to a complete stop. I can't think clearly and it feels like I have lost control of my entire body and mind. It scares me to death. And about the feet --OMG sometimes my feet feel soooooooooo cold at night it just aches to the bone. I try to put them in hot water but it never works. I too have the eye pain and when I try to read my eyes jump all over the page. I thought something was wrong with my mind, like I wasn't able to control in my mind where to look with my eyes. Sometimes when I wake up in the morning my eyeballs feel like they are going to jump out of my eye sockets. Like they are just bouncing around. It only happens really bad when I first wake up. Another thing I have going on is my second and third toes on both feet are going numb. It happens quite often but I notice it mostly everytime I take a hot bath or shower. They will stay numb for about 30 minutes after then they are fine for a while. I have a multitude of other symptoms but I wont' get in to all of them. I just couldn't believe I found someone else who was having those "episodes" when trying to go to sleep. I hope you find some answers soon. Take care. Toni

 
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