Hello...remember me?

[biowham]

Hi, all--

I've not been on the forum for a long time. I've got no real update in terms of a diagnosis. For catchup, I started with symptoms in October 2007. I have several T2 hyperintensities based on MRIs, including periventricular and juxtacortical. I also have a cord lesion, upper T spine. Lhermittes comes and goes. Motor symptoms continue--for me, walking a couple of miles and then feeling spastic, fatigue, and pain is the "new normal." Last summer, I went on hikes that once upon a time might have left me sore for the evening but that now leave me literally unable to walk for two days. On one, I barely made it back to my car, I was so disabled by it.

I've moved to a colder climate, and it seems to keep things tamped down in general. I have head paresthesias (tingling from nape up to halfway mark at ear, one side of head), which are entertaining, in addition to leg and feet paresthesias. My most interesting symptom since I was last here was a buzzing tinnitus in my right ear with any noise, especially running water, music, or a crowd of people talking. That's happened twice.

My last diagnosis, from 2009, was "myelopathy of the spine, probably at C3, possibly due to MS." I stopped there because I had an erratic neurologist where I used to live who just couldn't make up his mind. He had me on Baclofen but then took me off, and now I wake at night with my issues. The C3 whatever-it-is leaves me most nights with very numb hands and fingers (both hands, all fingers). I don't have carpal tunnel--have the many, many EMG/NC studies to demonstrate that.

At any rate, having some kind of exacerbation of whatever I have today, which made me think of this board and how helpful everyone always was, so thought I'd stop by to say hello and give an update.

Bio

[sllowe]

Holy Stinking Moley!!!!!!!!!!!!!!!!!!!!!

Is this really you!!!!!!!!! ??????? Prove it, lol!

I had to look twice, to be certain I wasn't imaging things. I'm sorry to see your in the same boat, and glad to see the time was good for you if even just a little bit. You'll see our forum is loaded with newly diagnosed that I hope come along and say hello, as well as those still undiagnosed.

Can you get something else for the spasticity? I started using xanaflex on and off and it's serving me well.

(((((Super big hugs))))) to you stranger. Nice to see you :)
-shell (or, SL, however you may remember me, lol)

[Lulu54]

BIO!!!!!! Yes, I just screamed your name from across the crowded room to get your attention.  LOL

  I did a shout out for you a few months ago, wondering how the heck you are getting on.  I was so hoping your absence meant you were better or at least diagnosed and getting on with life.

I would LOVE LOVE LOVE to see you back here again, sharing your limbo experiences.  (Sorry, I thought for sure you would have been dx'd by now!)

Even if you don't, let me say again I am thrilled to see you pop up.  

hugs to you,
L

[JaneK1975]

Hello! I'm a newbie, so we haven't met yet. My name is Jane and I just wanted to say that I'm sorry your symptoms are acting up. I'll be wishing you well.