Subj: my story Date: 2/27/99 8:19:18 PM EST From: (AT)aol.com (by way of Transverse Myelitis Association) To: tmic-list(AT)myelitis.org my name is nancy and i'm 48 and a mother of 5 sons ages 5-15. my first onset was on feb. 27,1998. i bent over in the shower to pick up a toy and when i stood up i went numb from the waist down. a week later i went numb from the waist up to my neckbone. at first my gp thought i had a pinched nerve and sent me to orthopedic dr. with no results. i then went to a neurologist who examined me and gave me an mri which showed a growth from c1-t6. they then sent me to a neuro surgeon who confirmed it appeared to be a tumor inside the spinal cord. i had surgery and a biopsy done which which came back infamatory tissue. i was hospitalized and given a steriod drip to reduce the inflamation 2 different times. i then went to uab kirklin clinic and was diagnosed with tm. my symptoms are: numbness from my chest down to my feet(feels like a novacaine) pins and needles all over(some days worse than others) severe pain in my upper back(if i didn't take neurontin i'd be hanging from the ceiling) when sleeping my legs go so dead on me they feel like lead my dr. says that eventually the majority of these symptoms will go away about 75-80% within 2 yrs. if i don't develop a setback. so far so good. i'm moving around alot better now and upon his examination he sees a slight improvement. thank God i'm not paralyzed. i have lost no control of my bladder or bowels although i'm numb inside too. this is a crazy disease and a complicated one since it seems these drs. don't have a cause or a cure for this. the underlying cause seems to be viral even though i wasn't sick prior to onset. in fact i rarely ever get sick. i was tested for every other disease imaginable and have had 2 cat scans and 9 mri. i've had blood work done out the wazoo and brain tests done and everything negative. i would like to know if anyone has experienced any improvement or recovery with this weird thing and if so how long did it take and for how long have you been better? i know i'm quite fortunate that it could be worse but i'm sure tired of this as it has slowed me down quite a bit keeping up with the kids and all the volunteer work. look forward to hearing from anyone. good luck and god bless. nancy