Officially still in limbo ...

[aspen2]

I hope it's okay that I post my journey this way ... as a journal entry.

Would love some input for anyone willing to wade through this.  Short story, six week "flares" of trigeminal neuralgia, right sided weakness, pyramidal signs, fasciculations, disuse atrophy in one leg.  Start up in Jan. 2013.

Several mris, one which said  met McDonald criteria; the most recent actually inferred that previous radiologist was wrong (which could be, although first report was detailed, measured and careful and recent report was short and dismissive (basically just "not ms").

http://www.medhelp.org/user_journals/show/893449/Over-nine-months-later--and-still-no-answers-

Would love some input ... or even empathy from others in limbo ... :).  The whole concept of "wait and see" is frustrating just because there could be other possibilities out there ... I'm not sure why neuro appears to have stopped ruling out other things.

Thank you so much for any insight :).

[aspen2]

Results of sleep study in .. I commented under my blog post.

[aspen2]

To your last sentence ... ooooh, yes :).  Many conversations, as a matter of fact.

My closest family and friends can see things .. despite my best efforts to keep a lid on it.  The right-side weakness and TN have been pretty obvious.  The other symptoms, less so.  Thank goodness.

Keep us posted, PastorDan, about the results of your appointment today.  I know exactly how you feel going in to it ...

[PastorDan]

Wondering if I will be diagnosed today, and wondering if I will ever be diagnosed.  I first reported symptoms in July 2008, and first began considering MS around six months later.  It's difficult, no doubt, when you know that not even your closest friends and family can see what you're feeling, and all the doctors shrug, saying they see very little or nothing to confirm what you KNOW you feel.  I will pray that your journey is much shorter than mine.  Meanwhile, talk to your Maker about it.  He' listening.

[aspen2]

I know.  I feel like ... never mind a dx.  Just throw me a little bone.  SOMETHING.

This neuro is my second opinion.  First neuro agreed that lesions were too small.  I'm pretty sure that a third opinion wouldn't change that.

[Lulu54]

Darn! I hate it when someone walks away without having any better clue let alone lacking an answer as to what is going on with their body.  Unfortunately you already know that limboland is not for the weak or faint of heart.  It takes a lot to stick it out and continue to believe in your heart that you are experiencing something very real.

The reality is MS can start in such ways that it leaves few 'visible' signs and there are many people here who spent years waiting for confirmation tht they indeed do have MS.

I am so sorry you continue in limbo - the conflicting radiology reports and the lack of evidence by your neurologist is discouraging.  It's hard to put in persepctive when you don't feel good, but May is not far off - if you have significant changes before then I trust you can call this doctor or maybe consider seeing someone else for a second opinion?  

Unfortunately there's not much I can add but I'm sure others will speak up and add their support. hang in there - hugs, L