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9745005 tn?1410044366

Update

Still waiting for an appt to "get my head checked", but I'm definitely losing my marbles the longer this limbo land to whatever I have continues!  

    I met with a PT who has worked with gait disorders, not as a primary diagnosis though...but as a complication from another diagnosis (MS, Stroke, spinal injury)...she seemed skeptical that this is my primary problem and referenced one of her patients who finally got a diagnosis after 3 years!
    
The pt  asked if I noticed any muscle wasting or atrophy.. And i said I had and had brought it up to my doctor...and she said she noticed it in my left leg (with my jeans on & w/o me telling her that that was my symptomatic leg) !   So very disturbing that things are happening to my body and I can't function "normal" and yet no one can tell me what is going on!  

I'm going to circle back to my Internal Med doctor  on Tuesday,   Unfortunately, I don't know what else he will have to add, since he said "if anyone can figure it out, it will be the Mayo"!   I'm basically going to beg him to help figure me out and see if he thinks it makes sense to do a muscle biopsy...SOMETHING is going on!!  

Really wish I could just forget about this being MS....small part of me isn't too confident that I'm in the clear.   I guess time will tell...   So, blah....still the same here!

Karen
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Avatar universal
I have been in limbo since 2008, yup that long!

I actually got diagnosed in 2006 and got put on meds.  My diagnosis was taken back in 2008.  My doctor simply said that I probably had a virus or have "static encephaly" which means my condition wont change.  I changed neuros.  My new neuro said I probably never had MS and referred my to an infectious disease specialist, who told me that my first neuro likes to diagnose "everyone" with MS.

I went to a PT for neck issues and he was alarmed at how weak my left side of the body was and how bad my balance was.

I went back to my neuro and he was super annoyed with me, but ordered an MRI and VER test.  Still waiting for results.

I really want an answer...6 months ago I was playing ice hockey, now I can barely climb down a flight of stairs or write my name.  What ever I have has certainly progessed!

Best of luck to you, you are not alone in this limbo mess!
Helpful - 0
9745005 tn?1410044366
I'm so sorry we are all hanging out in "limbo land", although I played the game ad nauseam with my kids, I'd much prefer to be hanging out in "Candy Land" these days!  ;-)  

Wow, 2013...I took a peak at your blog, what a great idea and healthy way to express your frustrations aspentoo!  

So sorry to hear you are no further along in getting a diagnosis Linda!  

And yes Joiedecour , whatever hair I haven't already pulled out...is starting to prematurely gray from all of this stress...ugh!  

I pray we all get answers of some sort soon!  

Karen

Helpful - 0
5265383 tn?1669040108
Also in limbo here ... I so identify with the crazy.  I blog for therapy.  Just laying low after my lumbar puncture yesterday -- neurologist said that finally, "it is time".  I've been in limbo since January 2013 -- how long have you all been treading water?
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5509293 tn?1428531475
Hugs for both of you from another one tearing her hair out from the crazy circular reasoning of neurology!! We'll get there. Although where is may be anyone's guess!
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11119474 tn?1428702170
I sure hope you can get some answers, Karen.  I am in limboland still, too, and it's so frustrating.  Hang in there.

~Linda
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