Not sure if anyone can help or provide any useful insight , but thought it was worth a shot so here I am .
My mum has PPMS , diagnosed about 20 years ago . She gets up and dressed everyday with help of carers but is hoisted in and out of bed and chair etc , has a catheter etc . The last year has seen lots of hospital visits , cellulitis , low salt levels , uti’s , uti’s leading to sepsis etc. We’ve been doing our best to cheap a check on uti’s with d-mannose and Reg urine checks ( I bought the urine sticks online which are useful )
Aside from this mum has occasions where she falls asleep in the middle of the day and we can’t wake her up. Her sleep looks a bit disturbed , quite a lot of head bobbing . When i try and wake her she can hear me and does respond with words but can’t have a conversation and won’t open her eyes . If I try and touch her face she will move my hands away and cross her arms tight . She has done this sometimes when there has been an underlying issue like infection but also when nothing appears to be wrong and the next day is fine . Obviously it’s worrying when we can’t wake her to give her a drink or just generally knowing if there is anything wrong . Typically I’ll take her temp / bp and heart rate and often all ok . Sometimes it’s taken 2 hours of blaring elvis Presley into her ear and she might then come round . It’s the strangest thing , almost like a deep sleep or dream she can’t come out of and can’t last a whole 12 hours often longer.
just wondered if anyone has seen anything similar / any advice ?
Thanks everyone , mum actually ended up in hospital after this , onset of uti and low salt levels which seems to be a new and emerging theme . The problem I find with the doctors is that they don’t know . Almost like we need a specialist . It’s just difficult for others when they don’t know what the norm is . Anyway thanks for your responses , if helpful some of her medication they think is drawing salt out of her body . Reduced the tegretol but unfortunately the neuralgia came back . Thanks , Susie
Hello, my own darling Mother, who is sadly no longer with us, and who did not have MS, also kept falling asleep during the day, in the oddest of places and when people were all around her. She was difficult to wake. Unfortunately, we did not take enough notice or get it looked into as thoroughly as we should have. Eventually, she had a massive stroke, which left her pretty much in a vegetable condition. She never came home and died following a bout of pneumonia 8 months later. From scans there was evidence of her having had mini strokes beforehand (TIAs), which may have been what was happening when we thought she was just sleepy. She was in her late 80s. I wonder if they have considered this for your Mum? I don’t want to alarm you but I kick myself that we did not act proactively enough. best wishes Gill
I’d seek the advice of a good general GP and run some tests. If you can, an endocrinologist or a neurologist may be able to reach a diagnosis faster. There are actually doctors out there specialised in sleep disorders.
Just thought I would let you know that it appears it was actually and of life MS . Mum was back in hospital at end of September for nine weeks and sadly passed away . I think her body had just been through so much with sepsis / cellulitis . She passed away at home peacefully and I was lucky enough to be there .