Story about Transverse myelitis .

On my way to work

Feb 13, 2016

By: Peggy


It was a normal day, I was running late to work. I work nights as an RN in the ICU. I ran to the kitchen to shove some speghetti in my mouth before running out the door. All of a sudden my left thigh felt cold and numb. My hubby says oh that happens to me all the time. He has had back surgery. So I thought well maybe I pulled something in my back. I took two Motrin and headed to work. Once driving I realized I could not move my left leg! I called my friend crying, not sure if I was having a panic attack but to meet me in the parking lot. I got to work and could not stand up! She went and got the er and they rushed me strait to cat scan. By the time I came out of cat scan it was moving up my right leg. I told the er doc I was steroids. He asked me why and I told him it's either autoimmune or a spinal cord injury, either way I want steroids and I was toradol (cause ins an anti inflammatory pain med) cuz now my legs were on fire and I had this pain in my left lower back all of a sudden! The toradol did nothing so I asked for morphine. I was trying to think of a pain med that would take the edge off without making me high. The morphine worked. It took the edge off but the steroid did not allow movement to my legs. They flew me out for higher level of care. At that hospital I spoke with the admitting doc and told her I felt like this could be autoimmune or viral and I wanted steroids around the clock and an anti viral like iv acyclovir. Two weeks prior to this I had what I felt to be a huge herpes outbreak trying to happen. Normally before an outbreak I can feel it in the lymph node in the area where the outbreak will happen. I felt it in the back of my leg only instead of the pain localizing to a small area under my buttocks at the top of my leg it went half way down my leg. I was out of acyclovir and could not get a refill unless I went in for my yearly papsmear. So instead I used my essential oils and it actually went away and I never got an outbreak! She agreed and started me on decadron 20mg iv every 6 hours and acyclovir 500mg iv every 8. I was finally able to move my toes but the pain in my legs got even worse and she continued iv morphine. I had another dose of each before I actually got my mri's of my head neck thoracic and lumbar back and my lumbar puncture. They didn't see leisons anywhere and no infections in my lumbar puncture. They did not know what was wrong with me but continued the meds for 3 weeks and during that time I started physical therapy everyday and was able to walk with a walker even though I was not able to feel the ground with my left foot. My waist was now numb down to the bottom of my buttocks and vagina. I was retaining urine since the er and had a catheter. Eventually the steroids were titrated off. I was incontintent of bladder and severely constipated but with an armour of meds I was able to pass stool, incontintent also. I refused in patient therapy. I needed to get home to be with my kids. I worked hard at home and now I am able to walk again. I went from nothing to wheelchair to walker to cane to nothing. This all happened October 2, 2015. Today is February 13 2016. I was referred to a neuromuscular specialist who diagnosed me with transverse myelitis 3 months after my attack. I don't know why they couldn't see a leison. But I know I am pretty much textbook of how it happened. I have neuropathy from my thighs down. The numbness around my waist is easing up but still tender. I am no longer incontintent but if I have to pee I better go right then or I'm having an accident! I'm afraid of reoccurrence but I pray I never have to go through that again. I feel lucky for it to have attacked my lower spine. There's probably something I'm forgetting but God bless us all!

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