My niece Millie has been suffering with myoclonus in her hip since she was 14 years old. Millie will be 19 in November this year.
It all started while she was doing cross country, she got a very bad headache and not long after her hip felt like it was twitching when she looked down, it was twitching. The teacher made her carry on and we are not sure if this contributed. Millie has been treated at Tameside hospital and Manchester children's hospital and is now under Salford Royal hospital. All of which are in the UK. While she was in Manchester children's hospital she had a lumber puncture and various scans. Over the last 4 1/2 years she has suffered with this condition and as time goes by Millie is getting worse. At the moment Millie can not be left on her own if she has an episode (as we call them) once the muscle stops and when it relaxes she falls down and has been falling over and down stairs on a daily basis. We have to be with her to prevent her from falling.Millie suffers from a constant shaking and bad headaches quite frequent. Millie also has constant pain in her leg. We have been advise that a course of botox injections may help but Millie's appointment is not until September. They have told us they don't know the cause of the Myoclonas and whether it is structural or functional.
Could any one provide me with any help, or information that may assist us. Millie and all the family are terribly upset and distraught we don't seem to be getting forward.
Very best regards and thanking you in advance.
Clare x *edit*