I am definitely retaining as I need to wee again just 5 minutes after going but even then it still feels as if I’m bursting to go. I have the ‘bursting to go’ feeling constantly at the moment. It took ages to get to sleep last night …
I think part of the problem is that I’ve gone back to work this week and I find it hard to go in the staff toilets whenever there are people in and out. I need to relax and concentrate on the workings of my bladder before it works these days and that’s impossible in a busy environment. Then I start to stress that they think I’m trying to have a number 2 which makes the situation worse . I have tried to use the disabled toilet but last time I tried that there was still someone rattling the door handle (why can’t people accept that if it shows engaged, it’s in use!) so that wasn’t much better! Why does something which used to be so natural now have to be so damned complicated?!
Anyway, my urine doesn’t smell and neither does it burn when I go but my abdomen is uncomfortable low down and it feels swollen and hard to touch. I was feeling well at the start of the week apart from back ache which yoga eased but now I feel quite lethargic and have some other symptoms playing up like poor balance and tingly feet.
Bearing in mind it’s a bank holiday, I have picked up a urine sample bottle from my surgery. They always make me feel as if I’m wasting their time though. I think I’ll get it checked out as it doesn’t take them a second to do a dipstick test and I don’t want to get worse this weekend. If it’s not a UTI then I don’t know what to do …
Isn’t that just the story of our lives? I think you have summed up MS perfectly!
You are definitely doing the right thing, getting checked for UTI as a first step. If that is not the problem, or is only part of it, you will need to talk to your GP - sooner rather than later - about finding out what fault mode your bladder is in, and what to do about it.
Thanks for your reply. Getting a GP app’t in this town is like getting blood out of a stone. My GP wouldn’t even see me when I had a relapse, they checked my urine and he spoke to me over the phone to discuss my symptoms and ask if I had a fever or any other signs of an underlying infection! I really felt like telling him that if he had seen me he could have checked me over himself! If I don’t have a UTI then I’ll ring my nurse for advice as I’m sure she will have some useful tips for me.
As for the complicated bit, it now applies to walking, dressing, bathing, cooking etc. My symptoms are mild compared to some but everything needs a lot more thought than it used to … The only thing that mostly comes naturally (when my bladder isn’t playing up) is sleeping. Now that I could do all day
Hello Tracey I’ve only ever had one UTI…I never want another. I continually had the urge to pass urine but hardly passed anything when I got to the toilet. It was painful as well. I hope things improve for you soon. Is something being done regarding the retention Tracey? These thing always seem to happen at weekends and bank holidays. Noreen x
I had had a couple of UTI’s where I ended up passing a bit of blood and some strong antibiotics sorted it out fairly quickly. I had all sorts of tests and an Endoscopy (I think its called with the camera jobby). The issue for me was directly related to the MS where to manage the problems I had with retention I was prescribed Oxybutilin (not sure if the spelling is right?), which works fine in terms of bladder control, but, because I wasnt emptying the bladder completely then an infection set in, so I suppose that the UTI’s were as an indirect result of my MS (the medication to mitigate one of the many issues that come with MS)
Thanks for the replies. This only started yesterday and isn’t painful, just really uncomfortable and annoying that it feels like I want a wee all the time. It doesn’t hurt to pass urine but I’m conscious of it being a long weekend and I don’t want it to develop into something worse. I’ve dropped my sample at the surgery and have to wait for them to ring. My abdomen is swollen and it was a real pain trying to sleep when you’re convinced you need a wee! I could happily sit on the loo all day at the moment. I’m doing my best to keep drinking as I know that makes thing worse but it’s the last thing I feel like doing.
My nurse has always said that the first thing to do is to get checked for a UTI so that’s what I’ve done. If it proves negative at least I have the long weekend to carry on drinking plenty and see if I can kick my bladder into my’ normal’ pattern again. I’ve given up hoping for normal normal.
Totally understand sympathise - both about having to “think hard” to do normal things like walk and pee, and the crazy situation with the doc’s appointments.
I’ve been suspecting for some time I may have a mild throat infection that’s exacerbating symptoms. I eventually gave in and called the doc about 10 days ago, but I still don’t have an appointment 'til Tuesday. Which is a shame, as I’m hoping to do some nice stuff this weekend - I was thinking that if I did have an infection, it could all be treated by now, and I’d be feeling a lot better. Now have to set my sights on feeling better for next bank hol instead - LoL. But I don’t think I’m doing anything special for that one.
Yeah, I hate having to go to my surgery for anything as they always make me feel like I’m just a nuisance even though I now have a chronic condition. (Apart from the time when I asked for a referral to neuro physio and the doc wanted to give me steroids!) To get a same day appointment you have to ring on the dot of 8am and tell the receptionist what the problem is. IF she feels it warrants an urgent access appointment she will slot you in … Otherwise you have to call back after 10am and you may get an appointment in 2 weeks’ time if you’re lucky. If you leave it until 10.10am they have all gone and you have to ring the next day … if you’re still alive, that is grrrr!
I’m still waiting for a call to see what my urine sample shows …
On the positive side my bladder isn’t so shy about peeing near other people at work any more. It doesn’t have a choice at the moment, I’m having to go 5 minutes after every glass of water or cup of tea no matter how busy the other cubicles are! Every cloud and all that
I hope you still manage to enjoy your weekend, Tina, and that your throat isn’t anything too drastic. Would it be worth your while buying some of those throat numbing lozenges you can get from a pharmacy? I know it doesn’t help with the other symptoms but it would perhaps sort the throat out and be one less thing to cause discomfort. At least the weather forecast is good.
At least we can say that life with MS is never dull eh?
Grrrrr! My surgery is useless. I had to ring them back just now and they said nothing obvious had shown up on the dipstick test so the sample has been sent to pathology at a hospital 50 miles away so they won’t know anything more until after the weekend. I have now phoned my nurse to see if she has any advice. I normally go out on a Friday night but I think that’s impossible.
I guess I’ll just have to keep drinking all weekend and see if that calms my bladder down. I guess something must have irritated it although I can’t think what. All I know is it’s still driving me nuts!!
I can’t understand why the doc couldn’t prescribe a suitable antibiotic, just in case it is a UTI. Just to be on the safe side and the weekend coming up.
they dont prescribe them for a UTIs unless it generally been confirmed since some antibiotics work better then others for a UTI amd if it isnt a UTI, they don’t want the body building up a tolerence for meds
if nothing showed up on the dipsticks, its possibly something else that is the problem that needs to be looked into. just do what you are doing, drink a lot of fluids (water mostly) but if your tummy area becomes more painful/distended you might need to go to A&E to get a catherter to help get rid of fluid
Almost hate to suggest it, buy why not but some tena lady extra, just to use at nightime, then perhaps you will get a better sleep until the problem is diagnosed.
Well, in a complete U turn, the surgery phoned at 4.30 and woke me from my afternoon nap to say there is a prescription for me and they would leave it at the pharmacy next door! I had phoned and left a message for my MS nurse at Addenbrooke’s for advice straight after speaking to the surgery at 3.00 and had left my mobile switched on next to me in bed in case she called back. I wonder whether she suggested this course of action to my surgery …
So I now have some antibiotics, I can’t remember the last time I took any … let’s hope they do the trick as the frequency is getting worse.
I just wondered how you had gotten on with the antibiotics? I had very similar symptoms (frequency, urgency and incomplete voiding). None of it was painful or uncomfortable - just annoying.
My GP tested me for a UTI which was negative so referred me back to neuro and he basically said it had been a relapse as spinal nerve inflammation or demyelination can cause these sorts of bladder problems.
Well, it’s all still a mystery as to why the surgery came up with a prescription! My MS nurse called back from Addenbrooke’s yesterday to say she had only just got my message after the weekend as their answer phone plays up sometimes and it didn’t show up there was a message until they had all left on Friday! So it wasn’t her intervention that played a part. I told her the receptionist was very cagey on Friday and rang off before I had woken up fully so I didn’t even get a chance to ask any questions. When I arrived at the pharmacy the lady on the front counter had my tablets in her hand as I walked in which is not the usual service I get so it did seem very suspect! My nurse (whilst not wanting to cast aspersions) thought that maybe someone had made an error and that is why they had called me back and were being a bit cagey. She suggested I ring them back after a day or two to see if I do have an infection as it would be useful to know for my own peace of mind and for my hospital records.
I phoned the surgery today as the path results should be back now. The receptionist who is on today is a different one and is oblivious to Friday’s shenanigans. She said my dipstick result was borderline for UTI and also showed a trace of blood. She felt the GP may have gone on this coupled with my symptoms and decided to issue antibiotics and felt that the trace of blood was more suggestive of cystitis. She said I could go back to see a GP if I wanted but most people just finished the course of antibiotics and that was the end of it. I explained that I just needed to know so my MS nurse could log it as well. She had to conclude that she wasn’t really sure so I left it at that.
I’m very relieved that there was something in my urine sample as my biggest fear was that if it wasn’t a UTI then it was a relapse as my legs have been really dragging as well and my hands and arms are more numb and tingly. If it’s a UTI/cystitis then it explains all the other symptoms so I can rule out a relapse. This means Gilenya is working but the low lymphocytes are possibly leading to infection. I guess I’ll have to be more careful with my bladder management. I’ve been looking up tips for that.
I am feeling much better now. I managed 3 hours at work before I needed the loo. That is a massive difference to how I have been over the weekend. On Saturday I may as well have taken my laptop and book into the bathroom . I was drinking plenty of water to flush things through and just stayed indoors and was very grateful for the downstairs loo. I don’t want this in a hurry again.
