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

Jul 04, 2009 - 6 comments

Limbo ms




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.

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230948 tn?1235844329
by uk2, Jul 06, 2009

I have been in limbo for 2 and a half years now my sx like yours waxes and wanes i have had bad periods where i was bed ridden for 2 mths i too never have more then a few days or maybe a week rebite from my sx i have had 2 mri's done and they were negative and LP negative and no more test as my neuro said its fibromyalgia yet 3 other drs say it is not fibro, mine come on suddenly like yours and changed my life forever more i have 3 kids it also wrecked my marriage and i am a singal mum now. I am going to the national in london UK for one more attempt at finding what is wrong my dr now feels its an auto imunne disorder or a neuromuscular disorder.

I feel that dr's just say its fibro as they dont want to search anymore for answers. I hope you get some answers soon.


458072 tn?1291415186
by peggy64, Jul 06, 2009
So sorry for all your troubles.

Ask your dr to refer you to a teaching or research university, like Mayo or some of the others. They may be able to pinpoint it down more for you.

  Hope that helps in some way...

535822 tn?1443976780
by margypops, Jul 06, 2009
You know I think it sounds like Lyme you can get multiple and many symptoms of it and the results often come back negative, it is curable with anti biotics, I am trying to sort this out now....Google Lyme and go to the Lyme forum as I say Negative result means nothing with LYme

428506 tn?1296557399
by wonko, Jul 06, 2009
I agree with margypops, your case is suspicious for Lyme disease.  Clear MRIs and LP make MS highly unlikely.  However, with Lyme, the screening test only picks up positive cases about 1/2 of the time.  So a negative Lyme test doesn't mean very much.  You don't need to recall the bite or have the "bull's eye" rash, either.

I went 1.5 years undiagnosed because I tested negative multiple times on the ELISA test.  I had to seek out a so-called Lyme literate physician, or LLMD, to figure out what was going on.  Lyme is a contested disease.  It is a huge uphill battle to get a dx and treatment, but the longer it goes untreated the harder it is to beat.

Please do come visit us on the Lyme forum:

958034 tn?1247072625
by kelbel3078, Jul 07, 2009
Wow thank you guys.  I have only been tested for lyme twice.  Will a western blot I wonder be a more accurate test?  Will Drs just do a course of Doxy just to see if that helps?  I would do anything to make this better.  It is awful.

Thanks again.

Avatar universal
by grammy5for8, Jan 29, 2012
sounds crazy but try  a gluten free diet for  a have nothing to lose

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