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day #4 flare

Jul 07, 2009 - 0 comments

Symptoms are still pretty severe, but the most annoying problem is this fatigue.  It is out of control.  My legs, feet, arms and hands just feel so heavy, weak and tired.  

This is really affecting my life and my ability to spend quality time and care for my children.  It is ridiculous.  I am only 31 yrs old and my body feels like it is 80.  

It is breaking my heart. My kids are looking up at me because they want to play but it is physically impossible for me to.  I can't get any house work done today.

Multiple Sclerosis Tracker

Flare day 3

Jul 06, 2009 - 0 comments

Symptoms seem a little bit today, but are still bothersome.  While in the shower today when I bent my head and back forward I felt an electrical shock sensation that started at the base of my spine and went up my back towards my neck.  It made me jump I felt like I was being shocked.

Multiple Sclerosis Tracker

flare day #2

Jul 05, 2009 - 1 comments

Symptoms are still pretty severe today.  I am completely worthless.  I attempt to get things done, but I just can't push through today.

Multiple Sclerosis Tracker

The good, the bad and the ugly of being in MS limbo

Jul 04, 2009 - 6 comments
Tags:

Limbo ms

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limbo

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Multiple Sclerosis



I have been battleing this "weirdness" as I call it for 8 months now.  In one moment my world has completely changed.  I would love to go back 9 months ago.  I would have taken a different look at that last "normal" month of my life.  I would have treasured every single moment.  I would have done so much more.  But I can't go back.

Eight months ago I woke up in the middle of the night to my right arm being completely numb and partially paralyzed from the elbow down.  At first I thought that it fell alseep and I just didn't wake up to shake it off.  From the elbow down to my fingers I could feel absolutely nothing.  It felt like it weighed 500 pounds.  After about 5 minutes I started to get nervous and I woke my husband up.  I thought that maybe I was throwing a clot or something.  About 15 minutes later the numbness turned to shooting pains that radiated from my finger tips to my shoulder.  That's when I really started worrying.  Then it stopped and what it left behind was a hand that doesn't work the same anymore.  

I called the Dr the next day because I was having trouble gripping items like a hair brush, squeezing the shampoo bottle, holding the phone, trying to get my kids dressed, or pull up my pants was almost impossible.  It hurt, and it was like my hand wouldn't close all of the way.

I got in to see the Dr a few days later and he said that it was probably carpal tunnel and send me a referrel to a neurologist.  I had to wait a little over a month to see the neuro.  I had a weird feeling because I didn't think that carpal tunnel would come on so quickly.  I am a stay at home Mom, it's not like I am on a computer all day long.  

About a week after I saw my Dr it started happening on my left hand, forearm and the left side of my neck.  My right hand still hurt, but it was much worse on the left now.  Every week a new symptom would pop up.  Numb areas, tingleing, loss of grip, loss of sensation.  With in a month my left hand, forearm, and foot were affected.  Along with my right hand.  

I have had visual snow going on for years.  I always thought it was aura migraines, but I noticed that on days where my symptoms were really bad the visual snow was worse.  

So now 8 months later.  I have multiple clear MRI's, a clean L.P.  I have tested negative for Lyme, Lupus, and everything under the sun.  Every Dr that I see thinks that I have MS by the pattern of my symptoms, but once they see the neg MRI and LP they say no way.  My neuro says Fibromyalgia during one visit, and then says it can't be Fibro the next visit, and then says maybe it's Fibro again!

Here is a list of my symptoms:  
Loss of sensation in my hands and feet.  (I burn myself and don't feel it).  The left side is worse then the right.  
dizziness and vertigo
visual snow/blurred spots in my vision
weakness in my arms, legs and hands (sometimes I hardly have a grip)
my feet feel stiff and heavy, it's hard to walk sometimes when I first get up
loss of memory, confusion, slurred speech, words don't come out right, mental slowness
extreme pain that radiates up my whole left side
electrical shock that goes down my neck
feeling like there are bugs crawling all over me
feeling like I am wet on various parts of my body, but I'm not
stiff/painful neck
horrible horrible fatigue
heat intolerance

All my Dr will tell me is that I do have neuropathy in my hands and feet.  He feels that I have some sort of auto immune disease of some kind.  Every visit he says something completely different.  He goes back and forth between Fibromyalgia and MS.

My symptoms come hard and then get a little better and are inconsistent.  But they never go away.  My life has been severely affected by this.  There are some days where I can hardly take care of my babies.  Most days I can't get on the floor and play with them because the pain is too great, or my arms are too weak to lift them, or my legs are too weak to run with them.

The longest period of relief I have ever had was a 1 1/2 weeks of hardly any fatigue, and mild symptoms.  Today they came back and hit me hard.  It makes me depressed because I can't be myself.  

I don't know where to go, or what to do next.  I feel like my Neuro is just saying Fibromyalgia because he doesn't know what to do next.  I feel like I am just a chart number.  He has never even tried the pressure points that go along with Fibro.  I tried and I didn't feel anything.

So where do I go from here?  What am I supposed to do to find out what is wrong with me.  Support and advice would be greatly appreciated.  For those who read this all the way through, thank you so much.