Hi Guys, looking for a bit of advice / support. I just mentioned to my MS nurse that I go to the loo a lot and that sometimes there was a delay before I could pee. I also have constipation. I was quite satisfied that it was because I drink a lot of liquid and was propably a side effect of pregabalin cos it interupts messages to the brain (I think). The next thing I knew I was referred to a continence nurse. I wasn’t worried because I “knew” there was nothing wrong. She made me keep a diary for a few days and then scanned by bladder. I failed her test completely. She said that I had about 250ml in my bladder when I had just emptied it - or so I thought! I was dumbfounded. I could not believe what she was saying when she said i would have to self catheterise 2 - 4 times a day or I would get infelctions and then kidney damage. She said that she will do the test again just to make sure. What is going on??? I was told I have sensory MS. My symptoms and blance, neuropathic pain, nausea and fatgue. Are bladder symptoms sensory, motor or automatic symptoms. I was always felt guitly for letting my symtoms get to me because many others suffer much more than me. At the same time I have anxiety about my symptoms getting worse and how I will be in the future. I am worried that this mean that my symptoms cannot be classed as purely sensory and that I was right to worry. I’m a realist and I think I will find it easier to deal with if I know what I’m dealing with. I am just stunned and am trying to think of a way out of this. Again I feel guilty for freaking out about this when I know so many of you deal with catherorising every day but I don’t want to be one of you. I would be grateful for any comments / info / feedback
Can’t help but wanted to bump you back to top
I am suffering the same symptoms as you and did self catheterise for several months until suddenly my bladder decided to start working again. I still have 120-130ml retention but that is ok. Sensory damage is pants and anyone who says otherwise is an idiot. The Continence Nurse is right that you have to pay attention to this problem. My bowels are also causing me trouble and it has taken a couple of years for me to be able to talk to the CS about it but I am better than I was and it is nice having someone at the end of the phone to talk to about what is a sensitive subject.
Having had a few accidents this year my bowels are a cause for concern and this might get worse but hey I won’t hurry to decide that this is so. Peaks and troughs are inevitable with MS and I decided that I would not worry about things over which I have little or no control.
Send me a message if you want a further chat about sensory symptoms. It is 12 years of disability now but before that I 22 of normalish life once MS struck.
i was told to self cathetirise by my continence nurse, like you she said it could lead to kidney trouble.
the first thoughts i had were horror and disbelief.
however i started to self cath about a year ago now.
its not so bad. i do it in the morning after using the loo and having a shower.
i had a lot of trouble finding the hole and used to get all in a sweat.
now i use the bags with the catheter and i can see how much i’ve retained.
this morning it was 300 mls.
honestly alba, give it a try - you don’t need kidney trouble on top of ms.
also it gives you about 4 hours without fear of wetting yourself.
Sending you a hug
i too have been having a problem with time delay when going to the toilet and then later will find that i could stand up and leak its so embarresing am going to see the ms nurse next week so think i will tell her, anything like this scares the hell out of me this has happened before but has been going on for months now xx
Hi, I just started ISC today and was very hesitant and nervous beforehand. It will take some practice but is no worse than learning to use tampons in your teens. I chose to start catheterising because if the difference I knew it would make to my life. However, if your bladder problems are not causing YOU concern. And you’re not getting infections then I think you should just refuse self catheterisation until you feel you need it. It’s available to make YOUR life easier, not to allay the worries of medical professionals. They are there to work for you; not he other way round : )
I’m afraid I cannot help with the practicalities of ISC, as that is not a hurdle I’ve had to cross, as yet. But I’d just like to say that, whatever you may have been told, there’s no such thing as “sensory MS”. ALL MS can affect both sensory and motor function. There’s not a special subtype that can tell the difference, and knows only to affect sensation. It’s possible for symptoms to be purely sensory at any given time, and describing it as “sensory” may be factually correct at that moment, but it doesn’t mean it’s a different form of MS, that won’t/cant ever affect motor function too. There seems to be a trend at the moment (though I sometimes wonder if it’s all coming from the same one or two consultants) for patients to be told at diagnosis that their MS is either benign, or sensory. Sensory MS, as I’ve said, does not exist as a diagnosis. Benign MS, although it is a valid diagnosis, can only be diagnosed retrospectively, after ten years or more of a benign course - it can’t be predicted at onset. So although I’m sure consultants mean these labels to be reassuring, the other side of the coin is people may be falsely led to believe they don’t have “real” MS, and therefore to feel anxious, or guilty they’re “making a fuss”, if symptoms don’t seem quite as minor as the picture that’s been painted. MS is just MS. Yes, it does vary hugely in how it affects people, but nobody should be left thinking they shouldn’t have any symptoms, because their MS has been dubbed “mild”, or “sensory” or whatever. It’s individual to everyone. Your symptoms ARE your symptoms, regardless how someone’s chosen to describe your disease. Airily dismissing it as “sensory” doesn’t mean you’re not a fully paid-up member of the club. Tina
Have no experience of your symptoms but hugs are on their way. Hope you get sorted soon. xx
Hi Alba Don’t blame you not wanting to self catheterise (ISC). Don’t if you don’t want to and can manage without and you have no problems. For me I was constantly on the toilet every day. Up 4 times at night. ISC changed my life. unpleasant at first but now is so easy. It means I am not constantly searching for a loo. I ISC and my bladder is empty and I am free from the loo search. Hugs Min xx
Thanks to everyone who replied for your advice and support.
I am feeling much more positive and know what I intend to do. My bladder doen’t cause a problem for me so until it does I won’t be doing anything. I have enought other problems without that too.
I will tell her she can keep her “straws” …
Thanks again everyone
Reading back - your original post - you say you are constipated. Well a blocked bowel does cause pressure on your bladder and can stop a full flow. So perhaps this is what you need to improve first. l found a few ready-to-eat prune/figs/apricots cut up - with a banana/greek yoghurt and a handful of linseeds and some honey works a treat - without purging. l know many folk say eat lots of bran for fibre - but l think bran can work the other way and set like concrete. Just put some in a bowl and add some water and leave it. Once set - you could use it for building a wall!!!
Glad you are feeling more positive - and please don’t think that what others with MS suffer will necessarily happen to you - because that is not the way it works. Everyone with MS is quite different. And there is usually an answer to all problems.