Back Pain Community

First off I want to thank everyone for reading this because I have been searching online for any info about Chronic Radiculopathy since I seen those words in my medical reports I recently got. So let me tell you a little about what I have been dealing with.

I am a 23 Year old woman. I was born with Spina Bifida and Club feet along with other medical problems that go along with those birth defects. I was one of the lucky children with the right doctors at the right time because after years of surgeries and hard work... I am able to walk without braces or a wheelchair. With Spina Bifida you can have this thing called Tethercord, I have had that more than once and had surgery to fix the problem.

About 3 years ago I had a tethercord surgery about a month later I started to have the same pain and numb feeling in my legs we did a mri to see if it came back but everything looked great after surgery. So why the pain? My back doctor sent me to a NERVE doctor.... I had a Nerve study done I believe its called a EMG where they also put needles into my muscles and shocked them to see if the nerves were working.

It showed I had Chronic Right L5-S1 Radiculopathies and a mild acute left S1 and Chronic left L5 Radiculopathy. My doctor never once told me that I had that I actually asked for my records recently so I could take them to another doctor and looking over them myself it says in big letters DIAGNOSED WITH CHRONIC RADICULOPATHY.

I am on a few different nerve meds to help leg spams and when I'm in really bad pain my doctor sometimes will give me a pain med. I have actually video taped the leg spams now to prove to the doctors that this is really going on. Because sometimes I feel like they think it is all in my head... I just want answers. They just want to keep looking at well you were born with Spina Bifida and have had back surgery but its in my hands, feet and legs and it only seems to be getting worse like I said its now been 3 years. When it started it was just in my legs and feet... now it is also in my hands and fingers its like a tingling/needles poking at my skin. At times my feet and legs feel like it is burning because the leg spams and nerve pain is so bad... by that point it hurts so bad to move that I am just in bed crying.

I know my body this is something totally different. They have done blood work and everything looks good. I just dont know where else to turn. I have a wonderful husband who at times even needs to help me get out of bed or get me stuff because I cant move without crying because the pain is so bad. I will wake up in the middle of the night in so much pain. I cant lay still... it feels like needles, numbness, tingling, burning, the littlest touch is so much pain. Sometimes you can see the leg spams, sometimes you cant... but I feel my muscles spaming ALL DAY 24/7. I never get a break. I have looked into Radiculopathy & Neuropathy. It sounds like I have the systems. I just feel so alone because the doctors dont understand how much pain I'm truely in. I use to live in Chicago but now I live in a small town in NC where no one knows anything about my birth defects nor Radiculopathy it seems. So please if anyone has any advice or can relate to me I would love to hear from you because like I said I know this is not in my head the tests show it, you can see the leg spams but these doctors make you feel like its in your head because i'm not the normal case or because they dont know what is the cause of the nerve problems. Thank you for your time and for reading. -Jamie