My granddaughter has this its genetic, she is 12 was diagnosed at 9 all her life diagnosed with seizures ,tried so many medicines,tests in hospitals, finally a specialist said do genetic test, so we have answer but shes worse always duzzy ,it gets really bad 3 times a week where she just lays down vomiting for 2 days straight ,anti nausea med doednt stop it tried diamond for 6 months made it worse ,she crawls or walks leaning on someone or a Walker outside uses transport chair, dr said it which tried for a few months but too dizzy to go ,I feel she needs medicine for dizziness but am told there is none just take any nausea pill which she cant keep down ir it doesn't work and pt ,she also has blurry double vision which she has glasses which helps, does anyone know of any medicine for the extreme dizziness
Very informative thsnkyou . I wish I had backup like this. Feel like I have to just go away and get on with it after a late onset degenerative cerrabellum ataxia. Mri and nerve testing done but I feel I am I. A too hard basket so just go away
Great talk. I admire Dr Susan Perlman's patient-centred approach.
it is really good to listen to this. I’m now researching 'safe airway' it's what i need to know now
I have hereditary ataxia sca 7, is there a clinical trail for me, if so where can I get help.
My granddaughter has this its genetic, she is 12 was diagnosed at 9 all her life diagnosed with seizures ,tried so many medicines,tests in hospitals, finally a specialist said do genetic test, so we have answer but shes worse always duzzy ,it gets really bad 3 times a week where she just lays down vomiting for 2 days straight ,anti nausea med doednt stop it tried diamond for 6 months made it worse ,she crawls or walks leaning on someone or a Walker outside uses transport chair, dr said it which tried for a few months but too dizzy to go ,I feel she needs medicine for dizziness but am told there is none just take any nausea pill which she cant keep down ir it doesn't work and pt ,she also has blurry double vision which she has glasses which helps, does anyone know of any medicine for the extreme dizziness
Very informative thsnkyou . I wish I had backup like this. Feel like I have to just go away and get on with it after a late onset degenerative cerrabellum ataxia. Mri and nerve testing done but I feel I am I. A too hard basket so just go away