my daughter is in chronic pain and has been diagnosed with fibromyalgia and now scoliosis

2brespected Community Member September 20, 2011
  • I have a 14 yr old daughter that 2 years ago all of a sudden developed a myoclonic jerking in her right leg. I took her to the emergency room where they admitted her for 3 days to observe her. They did an MRI and an x-ray on her. nothing was found however they did say that she has some muscle weakening in her right side, glutes max and min, leg etc..they started her on physical therapy. the jerking went away and she got stronger.They discontinued the therapy and she went on with her daily routines and life..that was in july of 2009. In Nov. of 2010 the myoclonus came back out of a blue again, this time it was jerking every 15 seconds. Took her back to the Emergency room and they admitted her again. Once again they did another MRI and another x-ray. They told me that they were looking for a brain tumor. Again nothing showed up on either tests. Labs were fine as well. They did put her on zanaflex and clonodine. the jerking continued and the neurologist that came in said that there was a small lesion on her L1 but it was nothing to worry about as it was the same as in 2009 (which they failed to mention to me) They started physical therapy on her once a gain and decided to send her to the movement disorder clinic at washington university. We went to WASHU and the neurologist there could clearly see that my daughter still had this continuous myoclonic jerking in her right leg, pain in her lower back, her right foot was turning in however he said that all her tests were negative. He suggested that she see a neuropsychologist that this appears to be conversion disorder. He sat her up with one and she has been seeing him since June of 2011. took forever to get her into one because of her age and where we live. we went back to the neurologist for a check up the jerking was still there in june of 2011 so she has gone 7 months with a constant jerking in her leg that she cannot control. the only time it doesnt jerk is once she is asleep but the moment she wakes up the jerking is there and now has been effecting her knees, her back constantly, she has been loosing her balance and the therapist has now ordered orthodics, took impressions of her feet to have them specially made for her. the therapists has been working with my daughter for several months with pool therapy and land therapy. The neurologist had their physical therapists come in and assess my daughter and the therapist recommended  more therapy, higher arched orthodics. With all this pain and no answers, still seeing a psychologist I was to my wits end and contacted a rheumatologist. I took my daughter to the rheumatologist who then diagnosed my daughter with having hypermobility and fibromyalgia. she was placed on neurontin 100 mg 3 times a day, and to continue physical therapy and wanted her to get into pain management. We are now in pain management, and doing physical therapy twice a week. as of last week she has now been diagnosed with scoliosis as well and they have added cymbalta 20 mg twice a day and uped her neurontin to 200 mg three times a day. she constantly hurts, is missing alot of school still seeing the psychologists. 2 nights ago I had to take her into the emergency room again. this time her left cheek was tingling down her shoulder , her arm and fingers. the pain was intense and the fingers started going numb. the Emergency dr did a neurological test on her and because things didnt seem to be right he ordered another MRI...which by the way came out normal the MRI was of her neck and brain. He made the comment that the symptoms that she is having is sounding like MS..however the MRI is not showing anything. Im to my whits ends...my daughter is in all this pain and nothing is working...any suggestions?

1 Comments
  • Enoughisenough
    Nov. 29, 2011

    How is your daughter doing?? My daughter is 12 and although her medical stuff has been almost lifelong--much of what she's going through now is VERY similar to your daughter!!

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