Permalink Reply by Jenn on April 20, 2009 at 10:27pm
not yet.. Next step is supposed to be botox for my hip. (doesnt address the other muscles) My mom bought the tix.. so she didnt mess around. Travel insurance was a must. Yes, I have definitely stopped the artance. But I occasionaly take the klonopin. I try to think about me.. its so hard to be a sick mom. The kids dont comprehend that. I dont comprehend it. :P I try my best to keep it together.
Oh your hips ache too? I have been waking up on my back, which I sleep on my side, and hands numb. My right foot is almost always cold even the tip of my nose is cold. I sweat barely doing anything.
Permalink Reply by Jenn on April 20, 2009 at 11:02pm
yeah.. my neuro has confirmed dystonia in the right foot, thumb, and right glutes..
I also suspect abdomen, throat, neck and shoulder.. but those spasm could be due to other causes that we havent ruled out yet. Most of the time its my glutes that give me problems.. and it causes me to limp
Mine started about 3 years ago, feeling like cut in half. My right side started feeling odd. Went to Mayo who said just stress and later another doctor said neuropathy. I finally left Mayo and went to Shands. I had began a career, finally but it was a matter of time before I would fall and people see. I'd be limping by end of part time shift. Makes me want to cry just letting it go.
Permalink Reply by Jenn on April 20, 2009 at 11:17pm
with me Ive had the limp at least since 14.. but Ive been able to hide it.. This year it got to the point that no matter what I did I couldnt hide it. I have lived with my hand 'hip' and foot for over 10 years.. but never knew what it was and learned to ignore it.. It finally decided that it would not be ignored.. I guess thats why I shy away from the medications.. because I honestly dont really remember not feeling at least 'tight' in those areas. My last full time job had to provide a special desk and chair for me.. But I still was constantly at the doc's or in physical therapy. I ended up quitting. That was 2 years ago. Ive worked part time free-lance model since then.