Hi everyone, hope you are all as OK as you can be. I haven’t been here much recently, have been having a bit of a bad time. I saw my MS nurses on Monday (yes I have 2, not really fair when a lot of people don’t have any at all!). They were quite surprised how much I had deteriorated since the last time they saw me (about 6 months). My leg would not stop juddering all the time I was there. When I was talking about my incontinence, they decided to refer me back to the continence nurse with a suggestion that I might benefit from botox and self cathetirisation. This shocked me. I have heard of botox being useful,but don’t really know much about it. Has anyone any experience of this?
I was in a bit of shock after my appointment, especially when they said they were putting me on the urgent list to see the neurologist, they want to see me again in 2 months, and they also mentioned that I might now have moved to secondary progressive,which made me cry. I think I am still in a bit of shock, just typing this is making me well up!
Please can anyone advise me?
Hate seeing a post unanswered, so will try my best.
You are very lucky to have two MS nurses.
SPMS,Is not that bad,just new things to get your head round.
Not had botox before, but sure some people on this forum have,so hope they could chip in with some advice.
Use self cathetrisation my self,and once you get use to it,its not that bad[mans point not sure about women].
Please dont upset your self,[have a good cry if that is what you need].
Hope you get some replys, from people that have been through it.
I’ve had this procedure and it is fantastic,its made a huge difference to my quality of life. I had it done in November and it lasts on average for 7 months,just starting now to feel its wearing off a little but I’ve compensated that by going back on to one of the bladder meds. It may sound a bit daunting but its a really quick and easy procedure with great results.
Let us know how you get on.
I had botox in my bladder for the first time about 4 years ago and I have it repeated every 9 months. This procedure has been one of the best things I have had done and it has altered my life positively.Self catheterizion is no problem once you get the hang of it and catheters can be very discreet and handbag sized. You will be amazed at the differance it will make to your life - go for it !
Hi, I have had bladder botox for the last 3 ears and am due to go in for it again this month,went for pre assment today.I also have a supra pubic catheter,and I have secondary ms,try not to worry too much about spms it may not be as bad as you think ms is very strange so keep posative.The bladder botox is great you are in control of you bladder till you self cath( which is what I used to do before the supra cath) go for it you’ll not regret it.take care.Helen.x
I’ve had this and totally agree with Sue. Go for it, it is amazing and gives you back your life. Self cath is easy once you get the hang of it and you can get catheters which you don’t need a disable loo to use them in so you can be ‘normal’, whatever that is!
Good luck and go for it.