Wow - Thanks ever so much - you are all great !!!!!
Its amazing to hear from other people who are experiencing the same problems as Alison as you can't all be imagining this !!!
My daughters Pain Team get really upset when I mention my mums MS - they think I am scaring the hell out of my daughter and giving her something else to worry about
Alison and I have talked about this and although Alison was only 6 when her grandma died she can remember many of the problems she had and the way in which we handled it and she is also fully aware that she does not have MS, so has no worries on that score !!!
I have to agree that although I am fully aware that RSD and MS are two very different illness, the way in which they present has remarkable similarities and many of the treatments and medications my mum had have also been offered to Alison
Sometimes I feel like screaming - I have spent 32 years of my life helping my mum, dealing with spasms and walking difficulties and watching the spread of the illness until she died aged 57. I have read the book and got the T-Shirt when it comes to MS.
Some of the physios we have to deal with were not even born when my mum developed MS, yet they seem to believe that I have no idea of the way in which a neurological condition can present and the hard work needed to see even the slightest improvement at times - sometimes it feels as though myself and Alison have more experience in dealing with this type of condition than them !!!
We have to deal with this illness on a daily (and hourly basis). Although we try not to let it affect our lives, invariably it does to a certain degree even on the best of days.
Surely that "hands on" experience means that we, the patients and carers, have a valid input to make and we should be listened to if we feel that there are problems with balance, coordination etc.
I am keeping a log of all the issues raised and your responses and experiences and will discuss them with my daughters Pain Team when we next see her Consultant

Many thanks again
Andrea and Alsion