I’m after some advice from you lovely people. Long story short - my 14 yr old daughter had a seizure/ fit/fainting episode back in June 14, was admitted to hospital with headache, blurred vision, slurred speech, back/neck pain, numbness in hands and feet, as well difficulty using her arms and legs. After an MRI, they advised periventricular lesion and several small lesions to the back of her brain. Referred to Great Ormond street, they advised not sure, but rfrd us to rheumatology as my daughter has a history of auto immune. Batted back to neurology as prof in rheumatology said not their dept. Pretty much left to our own devices, as have been batted back and forth from local team and GOSH. My daughter has had a period of remission, when we went on holiday ( sunny and spent most of her time in the pool) but after a month had another relapse, symptoms being back/neck pain, short term memory loss, as she describes it brain fog, numbness in sides of hands and feet, right hip and leg not working and would give way, vertigo, nausea and bouts of fatigue. Pls add to this she has a problem with her right eye, the pupil expands and contracts differently to the other eye. GOSH have said, its just one of those things, she’ll have to live with the symptoms, local consultant has said not his problem…we’ve now gone private, where again we have been told that he’s not sure what it is, but he doesn’t feel its ms, however he’s put her amitriptyline…
So my question is lovely people - am I mad? I went through the process of my best friend being diagnosed, calls to ms society and brain & spine foundation, seem to confirm my own thoughts, and my research backs it up… So what do I do to get her the help she needs?
Thanks in advance, any thoughts and advice, gratefully received