CBD - Swelling

[JoannaW1978]

My Mum was diagnosed with CBD almost 2 years ago although her symptoms started 6/7 years ago, she was first diagnosed with MND but the diagnosis was changed to CBD in 2021. My Mum is non verbal, fed through a food tube/peg and is wheelchair bound. In the last 4/5 months she has gained quite a bit of weight and has swelling to her hands & face. She’s had blood tests but they did not show anything, The dietician had recently adjusted the feed but I don’t think this will deal with the swelling. Has anyone else come across this? The swelling in her hands was so bad in January that she had to have her wedding ring cut off at the local hospital. The swelling in her hands has gone down a little bit not in her face & this worries me.

[messier]

Has she had her heart checked? Is she on diuretics? My mum had this which was due to low level heart failure. She is on diuretics but the GP wouldn’t increase the dose due to risk on kidneys with her age (she’s nearly 89). However we have recently moved her to reclining rather than sitting in an armchair all day (she has no mobility) with her legs high and her body nearly horizontal and the swelling has really gone down.

[JoannaW1978 in reply to messier]

Thank you so much for your comment. Does your Mum have CBD?

My Mum is sat in a recliner chair during the day with her legs raised, this helps a little with the swelling on her feet but not on her face.

[messier in reply to JoannaW1978]

Yes she has CBD. I’d say her face is a bit puffy as is her body generally. Is it causing her discomfort or stretching her skin at all? The heart function test is probably the best place for you to start.

[JoannaW1978 in reply to messier]

Thank you. I have been in contact with my Mum’s GP and mentioned your comments and they are going to run further blood tests specifically for her heart function.

[Martina_MP in reply to JoannaW1978]

Blood tests are very limited, so if they are negative, don’t let them stop there.

[Martina_MP]

Has your mother been examined by a doctor? If her feet are also swollen, or her entire body, that is a very different scenario than just upper body and facial swelling. Highly unlikely to be CBD related. She needs more evaluation. In person.