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lupus myelitis of the spine
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mommymedic16 posted:
Hi everyone! I'm new here...27 years old, paramedic, mom to 14 month old daughter Madison :) diagnosed with lupus about a month ago after presenting with acute transverse myelitis of my spine (ironically, this flare began after receiving the H1N1 shot for my job). I've heard this presentation of SLE is rare, am wondering if there are others out there like me? I'm struggling to recover, have made excellent progress, but still many residual neurological deficits. I've now finally begun tapering from the prednisone and am taking Imuran and plaquenil. I've never had lupus affect anything else at this point, I believe I was diagnosed based on my serology results showing anti-nuclear antibodies and the myelitis. If anyone knows of anyone or if you have ever experienced myelitis, I am wondering about the course of recovery they've/you've experienced. I still have days when I get up and my legs completely fall asleep, I still have paresthesias of the legs and some back pain. I was put on amytriptiline to help with the neuropathic pain stuff. Looking forward to being part of this support group! Tara. :smile:
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HG1948 responded:
Tara, I sorry to hear that you ill. I hope that all of your symptoms can be brought under control rapidly and remain so. HG
 
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sleteacher1 responded:
Just wanted to say "Hi." I've had sle since 1986. You have found a great support group. If you don't get much a response this weekend you may want to repost it again next week. There is not much activity on weekends and with it being Christmas there is probably even less. I can't help you with your specific problem but hopefully you will find someone with the answer. Take care and Merry Christmas. Teach
 
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squirmy1963 responded:
Hi Tara. I looked up your diagnosis and I think it may be something to research more on your own. Presenting with this condition could be MS related, which is a "cousin to Lupus", my doctor said. Be sure to keep a journal of any new symptoms, it will help your doctors in this first couple years to get your treatments right, for any auto-immune disease, it takes time, and there will be relapses. It sounds like you are more educated regarding medical stuff than me, I just really want to welcome you and wish all the best to you, Tina


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