I have a 13 yr old daughter that back in Nov. of 2010 was admitted in the hospital for her right leg jerking. They told me that it is myoclonus and that they were looking for a tumor. They said that her EEG and MRI was fine however there was a small benign lesion on her L1. They said they wanted her to go to the movement disorder center in St. louis. We went to the center and they didnt do anything but evaluate her. He said it could be psychological being as all her tests including her lab work was fine. We seen a neuro-psychologist and he said it was clearly not psychological. She is doing physical therapy twice a week because they did discover that she has an IT Band. Everytime she goes to therapy the therapist is saying that there is muscle weakening in her lower back and in her hips and legs. We are now going to have a EMG in st louis in two weeks. Clearly they have no answers for us and I am very concerned. She is a happy go lucky kid, does great in school, has several friends and here lately she is becoming depressed in pain all the time and doesnt want to do anything. Could this be MS even with her tests being normal?
I know you are concerned. It is hard to say what it is. Especially since I am no Doctor and we are on the internet. If you are truly concerned it may be MS there are a few Pediatric MS Centers in the Country. MS is a very hard diagnosis since it is a diagnosis of excluding all possibilities and it will be harder since she is so young. Because of her age I think most Neurologists would want to watch and wait.
Even if she were an adult they may watch and wait. MS sometimes takes a long time for a diagnosis. If you are concerned about MS you need to see an MS Specialist. With a child I would go with a Pediatric MS Specialist. It was thought children did not get MS so many Specialists just do not know what to do with children.
It is good they ruled out psychological and make sure you have documentation of that. Keep records and CDs of the MRIs yourself. I had MS as a child but was not diagnosed until I was 46 and the records from childhood were long lost so it took longer. Back in the 1960's it was impossible for a child to have MS. My symptoms were different than your daughters.
My parents did not keep looking for answers. you sound like a great mother.
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