Posted by Daphna on April 30, 2010, at 11:37:19
Hi!
I'm new on this forum, but I've spent the past hour reading posts and I'm pretty sure I could get information here that I couldn't find anywhere else on the web.
For the past three years I have had attacks which leave me almost completely unable to walk for about 2 weeks each time (I cannot lift my feet). Two years ago my right arm also became affected. The first attack happened out of the blue and since then I have intractable upper back pain. When I'm examined, whether I'm having an attack or not, doctors find a bilateral Hoffman sign; Babinsky sign in the left foot; hyperreflexia with clonus; and other issues which always make them assume I have an upper motor neuron disease. Yet although I've had countless MRIs and 4 spinal taps, nothing shows up in my brain that explains those signs.
I have been diagnosed with hydromyelia, but the hole in the spine is apparently too small to explain the severity of the attacks. I've been told "something else is going on," but they can't figure out what.
I am not posting this in the hope that someone will diagnose me -- that would be miraculous -- but rather to get information on the effect of the meds I've been prescribed. I have two specific questions. 1. I was put on Klonopin about two weeks after I got ill, have been on it for three years, 1mg/day. Twice I was unable to take my daily dose for 3 days, and in both cases I had an attack. If the illness is unrelated to the medication, why does going without it cause an attack? 2. I am also on a very, very high dose of opiate pain killers. (My doctor said she would die if she took a third of my daily dose.) Percocet has no effect on me whatsoever so what I take is much stronger, yet I barely get any relief from it. As I write I have taken 4 oxycodone pills and the pain in my upper back is still at a 6: I'm making a huge effort to ignore it as I'm writing. I am 5'4 and 135 lbs.
For whatever it's worth, I've never been able to get drunk, no matter how much or what I drink, and anesthesia is always a nightmare (I don't go down). Yesterday my doctor said my brain was resistant to the drugs, but she didn't explain. If someone reading this is familiar with that problem, I would be immensely grateful if you could post whatever you know. Even shreds of information are better than nothing.
Thank you all so much.
poster:Daphna
thread:945727
URL: http://www.dr-bob.org/babble/20100425/msgs/945727.html