[bobcatsrule]

Howdy and Good mornin'

i think this makes week 3 or 4 or maybe 5 of RULE-OUT-ITIS! That is what my doctors have caught (sure took them long enough). but slowly we are putting the puzzle of my life back together (you know it always amazes me how we can take a perfectly good picture and chop it up in to a million bits and then package it as a "child's toy" to be played with and reassembled!)


Well my life is and has never been a child's play and that is ever true for the doctors. However, in the past 5 weeks we have made some progress. Here is my top 5 things of what it is NOT!


5) NOT diabetes
4) all major organs check out OK!
3) NOT vestibular system problems (not the cause of my balance issues)
2)NOT conversion disorder
1) NOT NOT NOT NEVER HAS BEEN Myasthenia Gravis!!!! (GERRR that is what i was misdiagnosed with for over a year and treated for with icky hard on the body meds that i didn't need!)

Now that we know somethings that it is NOT lets take a look at what it is...

1) Visual problems
- pain behind left eye when moved
- blurry vision that looks like doubble vision but on a smaller scale in left eye when it is the only eye open
- eye moving to the beat of it's own drummer (left eye moves uncontrollably during an "flare up")
- macro double vision (where i see two images side by side in addtion to the micro doubbling from my left eye!)
- all of the above during the last flare up.

2) Balance problems (me sea legs are at it again! I walk like a drunkard and sound like one too half the time).

my cane and i are great friends b/c of this sea legs problem.

3) The medicine for the Myasthenia Gravis was masking the sx to the point that the doctors became as confused as i was!


I have my MRI of BOTH the BRAIN AND SPINAL CORD (cervical - neck - portion) next week (thurs April 17th 08) and I go back to the neuro today to try and see what i can do about this last flare up that i had.)

so the back and forth up and down goes on and on till we arrive at the correct dx. At least they are listening to me now!

I'll keep ya'll posted!
and bobcat (Rachael)

[Victor H]

Bobcatsrule,

I bet that the MRI will be a great evalution tool for you.

-Vic

[SallyC]

Love your post, Rachael..You made me laugh..not at you but with you.. No, it certainly is not a game, but I know what you mean. They can make you feel like a darn ping pong ball, at times.

Good luck with your MRIs. I hope they turn out to be deffinitive of something!!

[tkrik]

Originally Posted by SallyC

Love your post, Rachael..You made me laugh..not at you but with you.. No, it certainly is not a game, but I know what you mean. They can make you feel like a darn ping pong ball, at times.

Good luck with your MRIs. I hope they turn out to be deffinitive of something!!

I enjoyed your post too.

The good news is you are finally ruling things out. You now know what it is not and you can scratch those off your list.

I hope all goes well with your MRI and that you can get an answer soon.

[FinLady]

Hope the MRI goes ok and that your docs keep helping you search for answers. Hang in there during the "what-its-not" process.

[weegot5kiz]

hang in there and good luck on getting answer and your post was good the eye moving to beat of its own drummer, made me laugh out loud, cause I can totally relate to that

[the Bird]

Rachael,

I think you are on the right track and sounds like you have great medical people now!

A puzzle. We are a puzzle. And I have learned over the years that is exactly what medicine is. We are the puzzle box, the sx are the puzzle pieces, and the doc is the one to put it all together. And we all know from childhood that some people are better at putting puzzles together than others!

You go girl!

[bobcatsrule]

Thank You to everyone who has offered encouragment and support during this rough time. Fortunately i have gotten my eyes to march to the beat of MY DRUMMER!

MEANING I had a little attitude talk with that roving and ever creative left eye of mine and I think we came to an understanding. ...

the understanding being that if it wants to ROVE and dance to its OWN DRUMMER then it must provide ample warning first so that the rest of me can get in sync with it's drummer! But I doubt that It will "listen"! I mean really, it acts like it don't have any ears or something dumb "deaf eye"!!!!


Anywho, i went to the neuro today and i think we are all on the same page now and it helped that i had the last "flare up" documented. They are doing both MRI's (brain and C-spine) and they are sending me to virtually every specialist that walks the planet it seems like. but that is a good thing and hopefully some where in all of this i will get my answers that i long for so much!

i tis kinda an overwhelming feeling to be THIS CLOSE TO AN ANSWER i mean i have lived eight long years being told I'm just crazy or just not saying anything about it at all b/c i was afraid to. Now I am within as little as a month of a difiniative answer and I kinda don't really know what to think or do or say. It is the weridest feeling. I mean i thought when i got to this point i'd be estatic but instead i feel more like (bawling) b/c the feeling of having legitimacy is overwhelming.

Anyone out there have any suggestions for dealing with this, gotta admit this is new for me. I'm so used to being told I'm crazy when I know I'm not that it is going to be weird to have people actually take me seriously for once in my life.

I mean i know i'm supposed to be GLAD and all and I am in some ways but it is terrifying to think of the possiblity of a real cause for all of this and that denial of others won't exist to the extent that it did before. I thought at one point that I was over the denial phase of dealing with this nameless thing. but i realize now that I am almost face to face with it, that I'm far from being out of deinal. In fact denial is a much more conformable place to be!

I could use some cyber s right now b/c this is hard for me. And really scary too!

[FinLady]

We've been in that scary spot before. When I was first dx'd, it was relief at being listened to and that I had a name for what was going on.

Then the overwhelming cycle of emotions that I've had for the past year of coming to terms with what I had. I'm not quite sure when and not quite sure how, but I'm getting better.

I still scream and cry sometimes, and on my really good days I'm sure they still made a mistake. But I know my board buddies will listen to my rough days and understand even when no one else does.