This Is MS Multiple Sclerosis Community: Knowledge & Support

Gary is thinking about having the botox injections to the spchinter of the bladder. Currently he is self cathing to go all the time, but has feeling of how much, when he has to go, etc. He just can't GO. We have tried ALL of the bladder drugs with no response. I have read many good abstracts on this treatment and the option has been brought up by his neuro and uro. I would love to know more if anyone has had it done here.

I know you said ALL, but 4-AP?

He is on 4AP. Been on it for some time. This bladder issue wasn't found out until about 2 years ago, but we realize it had been going on for years before. Heads up for anybody with voiding problems. GO TO YOUR UROLOGIST!! When we discovered the problem, never went to a DR b4, Gary was RETAINING after voiding 1600cc of urine. That is almost 2 urinal fulls! Because of attacks and stretching over time, his bladder became less sensitive to what was going on. Since he has shrunk his bladder back down to normal, his feeling is back in tack.

Amelia

Here's a very technical paper that may help you decide. https://www.icsoffice.org/publications/2004/pdf/0150.pdf The researchers are led by Prof Fowler of London's National Hospital - one of the UK's centres of excellence for treatment of MS.

I've not tried botox but it certainly is on my radar.

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John
I am what I am

I am thinking about that one as well. I had thought it was just for Over active bladder. My problem is that I go a little bit, a lot of the time and always have urine in my bladder. Does anyone know if botox would be indicated for that? I would give anything to only go every few hours instead of 3 or 4 times per hour. My urologist keeps a close eye on my goings on with ultrasound and frequent appointments. I wanted to start IC'ing before bed to try and sleep all night, but he said I don't want to start cathing yet, so if this would work I'd be all over it.

Lew

Forgive me if I'm wrong but I think that the Botox option does involve cathertrisation.
Muu

Isnt it only for the initial treatment? That is, the botox injection is applied using a cath.

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John
I am what I am

Yes, it is only for the actual injection, from what I have read. When you self cath all the time, you get MANY more UTIs than usual. Believe me that is true. From what I have read, it solved or nearly solved the problems of leaking, not being able to go, and when you leave some in the bladder. 2 of the 3 people in one abstract I read where 6.5 on the EDSS. That is about where we have Gary. 1 was 8.0. That one did have some improvement, but the others had much improvement in voiding. Which tells me they were PEEING ON THEIR OWN. Forgive me for being graphic, but if it is not something you have lost before, you can't imagine how good it is to do that. The way Gary was before was much more embarassing and time consuming. He was "over spilling", meaning when he thought he was going, his bladder was letting the pressure off when it couldn't hold anymore. We did not know anything about this. The advantages of self cathing: knowing that you will go when you say go and no more looking for a quick side road to go to when you are on a trip. I can't tell you how awful that was. Yes we went the diaper route and that helped, but.... A diaper will only hold so much. Also, with a man, if the "position ain't right" it will go out the side of the diaper. Then you have wet on yourself ANYWAY. Gary is going to talk to URO about this. URO had mentioned it before. Will let everyone know about it...cost, procedure, effectiveness....etc