don' t like the sound of the alternatives either

[pennst8r]

I avoided looking up movement disorders as long as I could since the new neuro brought them up, but tonight I gave in and looked. Holy cow - they're no better than MS; some are down right scary. And the med they tried me on the first time we visited the land of movement disorders that had me drooling like a St Bernard is popular for many of them. See I resisted looking them up back then...what a good girl I was.

Don't worry - I'm not freaking myself out, but I do wish I hadn't looked. They're all yucky:(  I'm really wishing now I had pushed for a repeat MRI.

Penn

[Tahiri_Veila]

Always keep your mind open to the idea that you may have more that one thing wrong.  Yes the simple answer would be to have just one problem like MS, but sometimes that is not the case.  You said there was a movement disorder that had some of your symptoms.  Maybe that is one of the things that you have and the rest of the symptoms are from something else entirely.  Does that make sense?  Sorry I am kind of garbled today so if you can't understand its okay.
Tahiri

[Heather3418]

Instead of thinking like you will sound like a hypochondriac, think of it as wanting to know for sure, so you can get on with the job of living.  Explain to any questioning doctor that you are anxious to get on with you life and spending the majority of it, visiting doctor's is not what you had in mind.  I have found if I explain things like this to doctor's, they actually agree with me.  They no longer saw me as a constant complainer.
(I received my dx of MS over a decade ago)

I keep praying that the day will come where diagnosisng MS will no longer be the struggle is it today.  Maybe a blood test of some kind that will only show an abnormalitiy that is totally consistent with MS.  I am keeping my fingers crossed for all of those still stuck in the land of limbo.  It's the worse place imaginable to those going through it.

Hang in there Penn and we will continue to hang with you...

Big Hugs and Many Blessings,
Heather

[pennst8r]

I was on wemove.org last night. I too think that I fit much better in MS than movement disorders...and I tried hard to find reasons for me NOT to fit in MS. There was only one that described the "rolling" from one muscle to another that my legs are so fond of doing, which was chorea. Still don't think it fits me either. There were others with SOME similarities, but I just don't see me there either. They don't explain all my symptoms, I guess is my issue. The only thing I've seen yet that would explain them ALL is MS. The new neuro doesn't want to redo the MRI though (its over 1 1/2 yrs old), but then again my LP (November) was negative so who can blame him?

RLS could explain some of my muscle "oddities" but not the wet or branding spots on my head, heat intolerance, cog fog, visual issues... I guess I just resigned myself to some extent, because this is the second time we've come around to movement d/o.

I guess if it ireally is MS, it will really show itself eventually, right??? I'm afraid if I go begging for a new MRI I'll sound like a hypochondriac.

[Quixotic1]

There is a website called wemove.org.  It is definitely one of my favorite sites for discussing movement disorders.  Have you looked at it?  There are several more minor movement disorders that occur in MS, like RLS, myoclonic jerks, tremors and such.  In your reading what kind of movement disorder do you seem to have?  It hasn't been clear to me, because I always thought you sounded like you have MS.

Quix