Hi,
I’m 30 and care for my Mum who has had MS for 26 years, so it is advanced and as i’m sure a lot of you know comes with a lot of issues!
Since October last year she has been experiencing ‘periods of unresponsiveness’. When it first started happening it was obviously quite a scare and she has been in A&E 6 times between then and now, however there is no medical explanation the Doctors can find. Her blood pressure/heart rate/oxygen are all fine when it happens, she has had multiple head scans, checks on her heart and blood tests and nothing is showing up that would explain it! It’s the weirdest thing, it’s like she nods off and you just cannot wake her up at all until she wakes up naturally (sometimes up to 6 hours later!)
We did wonder if it was to do with an ongoing UTI issue but she is on new medication that seems to be sorting that. We have also tried adjusting medication after speaking to our GP but this hasn’t changed anything either.
Feel like we’re not really getting anywhere and just wondering if anyone out there has experienced anything similar? So frustrating when even the professionals have no idea!
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Hi Steph’
Sorry to hear about your mum.
Fatigue is an issue for most people with MS and, your mum has had it for a long time. A short while before I was formally diagnosed, I had been medically discharged from my career so, I took a job stacking shelves over night in a big Asda. After a week or 2 I was completely wiped out and slept for almost 2 days solid. If I read a lot mow or push myself too far, I need a kip indoors and, I sleep all night and wake up later than is normal for me the next morning.
If I had to guess, I’d wonder if your mum is getting very fatigued and taking the chance to sleep as her body is demanding. It’s good that she has been checked over and nothing else has been flagged up.
For now, keep an eye on her and make notes of anything that seems new or worries you, with dates and times.
Make sure that she keeps eating ok and, keep the kettle warm so that you’re ready to make her a nice cuppa when she wakes up.
Plenty of good rest will be one of thebest things for her.
Try to keep her comfortable and happy as best you can.
Best wishes you and you and your mum x
Jon.
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Hi Jon!
Thanks so much for replying, it’s reassuring that you’ve experienced something similar.
I was thinking that it could just be very extreme fatigue - i’d just love for someone medical to confirm that that’s what it is as the place she goes to for respite (11 nights 4 times a year) tend to panic if it happens (which i do understand - they have protocol they follow if someone is ‘unresponsive’) and they phone an ambulance which means we get a call from them and end up sitting in A&E for hours only to be told the same thing again and again.
Our new GP is great and is trying her best to get to the bottom of it for us so finger’s crossed we get some answers, even if it’s just a new symptom we need to adapt to!
Take care,
Steph x
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