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ms cervical spine lesions???

by pixiestixxs3, Jul 24, 2009 10:11AM
I was diagnosised w/transverse myelitis and MS in October 2008 and I've had 2 treatments of steroids that did not work, 2 treatments of plasmapheresis, which helped a bit, but wore off after a few weeks, and 2 IVIG treatments that wear off in about 4-6 weeks.My remissions do not last more than about 4 weeks and I was initially diagnosised w/primary-progressive ms that was not responsive to treatment, but now I've been told it is relapsing-remitting ms which I do not agree with. My mri's look fairly normal, but it has also been suggested that I have Ms of the spine.  I've been having severe Lhermitts sign nerve pain for about a week and it is effecting my left side from the shoulder to the foot. My arm is in constant pain, my left leg below the knee tingles, I have excruciating pain in my bladder w/incontinence, so I have to wear diapers again, and my left foot is completely numb and dragging when I walk. I have to wear a soft cervical neck brace all day to help decrease the pain, but I am still in constant pain, especially when I try to sleep. I take Neurontin and Tramadil for the nerve pain, but it wears off in about 2 hours and doesn't really help. I'm afraid that I might have a lesion on my cervical spine, and I'm wondering what type of complications I may have f/this.B/c my left foot is numb and dragging when I walk, and a few hours ago I started having more balancing problems when I try to walk and I just keep falling down, leading me to drag myself across the floor to get around. I'm afraid that I will become paralyzed again, but this time f/ above the waist. I've alerted my neurologist, and I am waiting for a response f/him and hoping that he will bump up my routine mri f/September, to some time soon. I can't take the pain any more, nor the incontinence which has plagued me f/day one. Right now I am going through at least 10 diapers, and trying to self catheterize has become harder b/c I do not have any feeling in my vagina, so it makes it hard to find my urethra. I don't know what type of treatments, other than medications, that will help alleviate these problems. I am at that point where I want to be catheterized, and I am wondering if it can become permanent b/c I am having some trouble putting on diapers b/c of the pain and weakness in my left arm.  I wake up soaked in the morning, and I'm getting diaper rashes b/c I pee in my sleep every night, but I do not notice it till morning. I've had accidents in public, so I have to carry a backpack w/diapers, a change of clothes and wipes to change myself  in public restrooms. It has gotten to the point where I do not want to go out in public b/c of this. I also get bowel incontinence about a week after the urinary incontinence starts, which makes me more home and bed bound b/c of this. I am divorced and live alone and I do not have anyone to help change me b/c it has become difficult due to  the pain, and my practically useless left arm. I need help getting around and doing household chores, and I am having to start to use my wheelchair, especially in public b/c I am also having balancing problems when I walk and  due to the paralysis of my left foot. Am I going to become more disabled f/this if I do have a lesion on my cervical spine no matter how big it is. Will I have to live in a nursing home for the rest of my life b/c I am truly alone and I won't be able to care for myself.Will this be as good as I get, and be left w/permanent disability f/this. I don't know what is wrong w/me and I need answers so I, and my quality of life can get better.
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