I’ve had hesitation since my first relapse for 3 weeks I had urgency. Are they supposed to improve during relapses or do they stay. ? X
Hi again For me it seems to fluctuate between the two. Came on with the relapse that led to dx and has never completely gone away. Sometimes seems to improve but it’s never gone back to how it was pre relapse. However I’m sure there are many people whose issues have improved once the relapse has passed. The one thing I’m learning about ms is that there is no rhyme nor reason to how it manifests itself which I think is one of the hardest things to handle. Ann Marie xx
hi emfraserburgh
i had bladder issues from the start of my ms.
i managed reasonably well for 3 years but then had cystitis that just wouldnt go away.
my bladder nurse has been a godsend.
she showed me how to self catheterise, i was very reluctant to do this but she told me firmly that i could end up with kidney problems.
it really isnt so bad and it means you are confident that it is empty.
i started taking a maintenance dose of trimethoprim to keep the UTI’s away. i havent taken any for a week but i’m glad that they are there if it all starts again.
don’t be squeamish and ask to be referred to a bladder nurse.
carole x
I’m maybe being stupid what does selfcatheterising entail. Do you have to do it every time. When I’m on steroids it goes back to normal but as soon as I stop it’s back to this. I have the ms nurse next week and she’s doing a bladder scan. Last time I had it done I’d had steroids so was good, then before I left hospital I could feel things going back again and I asked the nurse 3 times and she was just a ‘b*tch’ she wasn’t an ms one but I was in the neurology ward. She really wasn’t nice. Thanks for your advice x
Hi Em, Self catheterising or intermittent self catheterising ISC is a way of emptying your bladder of wee. I will try my very best to explain and try not to scare you as it was scary to me at first but now a godsend. With ISC you push a sterile plasticky type tube up your urethra which is your internal tube that links your bladder to,the outside world. Then all your wee drains out so that you have an empty bladder. This is great as you can ISC before you go out and hopefully not have your previous endless search for loos which I did. Shopping trip in town for a couple of hours = 4 loo breaks - now none. ISC is difficult at first as your other hole down there is larger and easier to push the catheter into. Helpful folk on this site have suggesting inserting a lady product up,there to effectively block the wrong hole up. So,easier to,access the right one. No it’s not painful. A mirror might be useful at first to guide you where you’re going. I find it very easy to do now - probably took a couple of months to get used to it. A continence nurse should be able to help you. - embarrassing yes but they’ve seen it all before. It really does make my life so much easier doing ISC and I wouldn’t stop. Hope this helps and good luck Min xx
Hi again Em OMG female catheterisation is on U tube!!! That should show you exactly - they just use a dummy. Min xx
So OK em final reply as I’ve just realised I haven’t answered your how often question. I know when I need to wee or ISC. I would say 5-6 times a day. Also just before going out and including just before bed. Final goodbye I feel like a forum site stalker - 3 replies I ask you - really!!! Min xx
Lol thanks min. The site stalker comment really made me chuckle that’s maybe because I just sent three answer to Barneyowl so it must be catching this evening. I would say I don’t need to go much now. I can go 4/5 hours and think I’ve not been to the toilet. And I do drink more tea than anything but drink loads. I would say I more don’t think I need to go. When I get up in the morning takes a couple of attempts to go but if I didn’t go back I wouldn’t ‘think’ I need to . Is it possible that baclofen or pregabilin kick in one I take my pills and help? Oh this ms rubbish is so confusing. I used to worry if my nails needed painted or legs shaved. Now that’s an afterthought lol x
Thanks Min for the explanation, I found this interesting to understand I am not requiring this currently but who knows in future. The part about shaving your legs made me chuckle I am being really bad at moment just can’t be bothered, to much else to take up my time. Just having a shower these days is a major task in itself. How your thoughts change
Hi Em, went through exactly what your saying and suffered/managed for a couple of years before I addressed what was happening. There is nothing you can tell a Continence Nurse that they haven’t heard already! I started ISC a month ago, it doesn’t hurt, isn’t messy and is a godsend. Believe me this was one route I seriously didn’t want to go down. I can’t imagine doing it without a mirror yet but I’m sure that will come in time. I’m supposed to do it last thing before I go to bed and first thing when I get up. At the moment I’m only doing last thing at night and OMG I had forgotten what a complete night’s sleep was (used to get up five to seven times a night) sheer bliss! Find out from your GP or MS nurse for a referral, it’ll be the best thing for you. Good luck. Linda x
Pigpen could I just ask you something. I’ve MS and didn’t have any bladder issues but since starting on Gilenya I’ve had frequent UTIs/cystitis.
It’s really starting to get to me at this stage because I seem to have one a week. I’ve antibiotics on standby and once I take two in one day it goes away but a week later it’s back again. I wasn’t sure if it was MS related or possibly due to supressed immune system due to being on gilenya.
Could you let me know what you mean by bladder issues if you don’t mind? As in, would I notice if the MS was doing something to cause all these UTIs?
Thanks
hi meme
my bladder issues at first were sudden desperation! i became obsessed with finding all the public toilets!
then it became retention, not emptying which is why i self catheterise.
my bladder seems to be over active and so the lovely bladder nurse offered me tablets for this, i told her that i have become rubbish at remembering to take tablets so she gave me patches. these are called kentera patches.
carole x
Thanks a million Carole. I don’t think it’s MS so as I’m fine until the cystitis kicks in. I’d say it’s more likely the Gilenya and reduced white blood cells.
Hopefully Tecfidera will be available soon here in Ireland and I can switch as on top on the recurring UTIs since started Gilenya, I’ve also had recurring flareups on eczema which I never had before.
Days like this you really wonder which is worse, the disease or the DMDs!