Scared and unsure

My left leg is increasingly messed up and it scares me a lot.

It twitches and spasms and isn't working right, and is incredibly painful. Like the other leg, the long muscles or tendons or whatever go off like crazy. And the sort of ants-in-pants ripply twitchy feelings as well. The ankle/foot drop part isn't as bad as the right side. The thing wrong with my knee on that side is wrong again, which seems to be spasticity and probably was, all along. It's like ropes or rubber bands attached to things, inside my leg, pulling all the wrong ways. Or like wearing torture boots made of squeezing snakes.

Am I getting worse so fast? Or is the baclofen doing something negative as well as positive? Could it be relaxing/unspazzing some things and setting off other cascades of neuromuscular activity and pain?

It does let up, I think, when I take it extremely easy and don't walk around too much, but that has its own frustrations and I also stiffen up if I don't move around enough. Everything seems like it's changing too fast for me to make any sense of what's going on in my body.

I wonder whether to increase the baclofen faster, or go off it completely to see if it's really making a difference - making things better or worse? I don't feel like I can tell any more.

Arms not feeling great - either - there are some things I just don't like to talk about at all -

That foot brace on the right side would be a relief. The clinic isn't scheduling new patients till next Wednesday when someone comes back from vacation.

I'm still thinking over my long talk with the neurologist and trying to process it. Very difficult.

Every time I think of my in-laws' attitude I cry some more in anger and frustration. I want to fight it out with them. It's hard to know they think of me as they do. On the other hand, I felt it -- and I'm glad I know it up front -- I'd rather know.

Other than dealing with pain, and being afraid now and then, life has been very sweet since Christmas. I'm really happy.

Comments

[Jo]

I think about you often and wish you the very best. Maybe soon I'll come over to your hot tub and we can burble and talk in the steam.

[elswhere]

You've been so upbeat on this blog, so full of piss and vinegar (in the very finest sense) that I hadn't realized things were so bad. Or are they? It sounds from this post like you're not sure, either.

Anyway now I'm kind of worried.

[badgerbag]

That's funny to hear you say because I feel like I've been relentlessly whiny about it all on this blog. I guess some of the more scared-hurting-help stuff ends up in locked entries on LJ.

I don't really know what to say - people ask me how I'm doing, and I don't know how to answer. Okay - except, not.

I am scared of the EMG which is likely coming this month, of the experience of it and of what it will say. The appt. with the neuro last week was very hard.