Today I went with my Mum to a genetics appointment at the Norfolk and Norwich University Hospital to meet with a genetics consultant from Addenbrooke's Hospital
He was very interested in the various different conditions in our wider family. Having found out all about our family tree he does think that my condition may start with me (a 10-30% chance) and not necessarily be inherited. Mum and Dad have been offered the genetic blood test so that we will know for sure and then know who else in the family may be affected.
Like the other doctors I've seen, he was keen to reassure me that the quite rapid weakening of my muscles over the past 18 months will not necessarily continue and should plateau out, at least for a while.
I am currently still waiting to see a physio since being referred to the Colman Hospaital in Norwich. This was supposed to happen following my appointment with the consultant there at the start of January but I am now chasing this up having heard nothing and would like to know the best exercises I can do to maintain the muscle strength I do still have!
He was very interested in the various different conditions in our wider family. Having found out all about our family tree he does think that my condition may start with me (a 10-30% chance) and not necessarily be inherited. Mum and Dad have been offered the genetic blood test so that we will know for sure and then know who else in the family may be affected.
Like the other doctors I've seen, he was keen to reassure me that the quite rapid weakening of my muscles over the past 18 months will not necessarily continue and should plateau out, at least for a while.
I am currently still waiting to see a physio since being referred to the Colman Hospaital in Norwich. This was supposed to happen following my appointment with the consultant there at the start of January but I am now chasing this up having heard nothing and would like to know the best exercises I can do to maintain the muscle strength I do still have!
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