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Old 06-10-2016, 10:29 AM
vickypanda vickypanda is offline
Junior Member
 
Join Date: Jun 2016
Location: East Yorkshire
Posts: 23
5 yr Member
vickypanda vickypanda is offline
Junior Member
 
Join Date: Jun 2016
Location: East Yorkshire
Posts: 23
5 yr Member
Default Any advice on MG

I was diagnosed with mg 18 months ago and are currently on mestinon. However this is about my daughter. She has always been a really ill child getting every cough and cold going turning into chest infections has always been very fatigued and unable to walk far, she has been treated for asthma for the last 10 years taking steroid inhalers and is 15 years old now. I noticed about a year ago that her right eye droops early evening. Took her to Drs and asked her to have some blood tests done for myasthenia. She got referred to a paediatric consultant who did lots of blood tests. The achr blood test came back positive for myasthenia the consultant said she definitely has it and she was referred to a paediatric neurologist. 5 months later she was seen the neurologist didn't have her notes didn't listen to her problems or symptoms wanted photo of her droopy eye etc and said she was only borderline and didn't want to give her any medication. The next sentence she said that a blood test of 5 or above is a positive blood test and hers was 7 and mine was 5 I definitely have it. I came out very confused and feeling very let down really. Basically the neurologist wasn't interested in her symptoms of severe fatigue, always been ill, finding school exhausting, achy joints, muscle twitching, double vision, finding it hard to hold arms up at school to answer questions, arms ache when brushing hair etc. She has been unable to have a normal childhood like my other children due to her severe fatigue when she isn't at school all she wants to do is rest!! Any advice as what to do next please! Basically because she could walk and talk normally the neurologist was not interested and didn't listen to anything. Any advice as to what to do next would be appreciated
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