Forum

Misbehaving

My bladder that is. These last few weeks it’s taken on a mind of it’s own. It’s to do with gravity I think. When I get out of bed,up from my recliner chair or out of the car seat and stand,if I need to wee there’s no stopping me. I race to the loo with the rollator (well, as fast as my stupid legs will let me) but more often than not lately, it’s too late! Either I just don’t make it in time or can’t get clothing sorted in time and as I can no longer hold on,as soon as the trickle begins, there’s no stopping. It’s embarrassing to have to ask Mr Poppy to fetch me clean underwear and trousers and it also worries me that things are getting worse. I’m seeing the neurologist tomorrow and will mention this. Any ideas what might be suggested to help? CAN anything help?

Keep losing my post. Bugger it. Try again.

Hello Poppy

Is bladder Botox available in Ireland? If so, and assuming bladder spasms are the cause, that can often be the answer. Subsequently you do need to use ISC to empty your bladder as it’s impossible otherwise. But that’s easier than it sounds.

Otherwise, there are drugs to control bladder spasms. Avoid Oxybutinin if possible. It’s an anti-cholinergic that crosses the blood-brain barrier. And once across that barrier, they can add to brain shrinkage later in life. Which is something none of us can risk! Apart from that Betmiga gets good reviews. It gave me elevated liver enzymes, so I couldn’t take it. Otherwise, there’s Tolterodine, and other drugs that can help.

Or of course (in my experience a horrible option) there’s Supra Pubic Catheters. But I had more infections with an SPC than with self catheterisation. So, while it helps loads of people, I don’t think it’s #1 in options.

Hope you’re well otherwise. And not bashing your brains out on the floor!

Sue

Thanks Sue. I knew I could rely on you for an informed response. :slight_smile: This was always the thing I dreaded, bladder and/or bowel problems. My neuro assured me it is not inevitable. I’ll see what she has to say tomorrow. Yes, I’m good thanks. I’ve remained upright all week and finally allowed my visiting hairdresser to cut and colour my hair. Gently! X

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I get this never did before. I just start going before i know it. I have been doing pelvic floor as well. I wont take anything i did try but i found they didnt work. My next step according to urologist is one of this bag things but at the moment i am just wearing pads and i try to empty more often and when i do go i rock back and forward.

I get water infections all the time so i do a check to make sure i havent got one usually i dont.

sue has answered you pretty fully but I know where your coming from its bizarre as one minute you dont even have a signal to go then whoosh.

Thanks CC. Unfortunately my pelvic floor muscles stopped working within the first year of diagnosis. I used to be proud of how strong they were. I worked hard to keep them good after having my kids and always exercised anyway. No,this is definitely a recent bladder thing. Even this morning, got out of bed, grab rollator at end of bed. By the time I got to the bedroom door bladder getting excited! Only just made it to the loo. If Mr Poppy had been in there, there’d have been trouble. I always wear light pads, just enough for a dribble, while I wrestle with trousers. Tg for elasticated waistband.

Don’t know why that is Anonymous. It’s me! Met with my neuro this morning. The “subtle changes” showing on my recent mri brain don’t amount to much she assures me and there will be no significant affects on my functioning.

Mr Poppy mentioned my severe head banging incident last weekend, when I took a closer inspection of our stone kitchen floor. She advised refraining from a repeat performance. I spoke of my misbehaving bladder and the issues it seems to have with gravity. She found this amusing. Not my problems but rather my phrasing of them. She listed the options. As expected, medication, isc (my eyeball rolling didn’t go unnoticed), botox and sp catheter. Last resorts. I’ve been prescribed Toviaz 4mg for now. Never heard of this one. Fingers crossed now. (Crossing legs doesn’t work).

Glad your neuro has a sense of humour. I can’t see that ISC necessarily would help with overactive or spasming bladder. You’d still end up wetting yourself albeit with maybe a bit less wee. Not that ISC is difficult or likely to cause more UTIs. I hope Tovias works for you.

Fingers crossed.

Sue

She’s great Sue. She’s quite a formidable woman but I’ve thrashed her into submission from our second meeting. We actually have a great relationship and she gives me and Mr Poppy so much time. Mutual respect goes a long way. :wink:

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I’m just getting ready to sack my latest neurologist for being crap. I suspect I know more about DMDs than he does. And I know how to read letters and also generally do what I say I will. He doesn’t. You are very lucky with yours. Mind you I also see a wonderful rehab specialist neurologist. So I’m just getting ready to go back to just seeing him. And bugger the DMDs for which I won’t be eligible.

Sue

Off with his head!

ah bless i have nearly done that myself, itchy fingers clicking where they shouldnt, no probs Poppy.

I was told i have a neurogenic bladdar and it could get worse, which i think it has. I try to deal with it as well as i can. My issue is once i am on my recliner I am so tired when i need to go i hold on and that is my issue, suddenly without warning i am wetting myself. I can be just brushing my hair whoosh, it just comes. I find it hard to go out really now as it happened on a small journey to garden centre.

Now see i couldnt take Toviaz as it has soya and lactose in it. i am sensitive to both.

I hope it works for you hun. I have a great relationship with my neuro when i ever see him, but he is pretty rare beast at the moment lol.

Neurogenic bladder…all these fancy words. I’ll settle for an ordinary one please. One that behaves itself. There is no “holding on” for me. If I get the feeling of needing to go, then I must head to the loo immediately. Ignore the warning at my peril! I’m fortunate to see my neuro every 4 months up until now. It’s to be every 6 months now.

You know Poppy (and CC)

I was thinking, what you need is a referral to a urologist. They would be able to for eg do Botox for the bladder, and it maybe that you get more direct experienced advice.

Sue

Thanks Sue. Neuro and I did talk about this but as my problem has only just started I’d rather begin with the medication and see how it goes.

I recently had urodynamics done to see what was causing my leaks. I already have botox and do ISC. I had explained that it was a gravity thing that happens when I have a full bladder. Unfortunately they weren’t set up to test my bladder like this so it was done by coughing with a full bladder when laid down. Afterwards he did offer me urethral bulking injections or urethral sling surgery. I’ve opted for neither as it isn’t too much of a problem at the moment and it seemed too invasive for the issues I’m having. I might have to consider them in the future. I definitely suggest a referral to a urologist would be the way to go if medication doesn’t help.

Sarah

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Thanks Sarah. I imagine it will come to that in time. Meanwhile, what pads do you people find are the best to use? Panty liners certainly won’t do the job anymore.

I just use the Lights bt Tena. I can usually avoid bigger problems by not having a really full bladder and doing ISC before it happens. I think if it was more of a problem then I would definitely opt for one of the urologist’s suggestions as I wouldn’t want to have to rely on bigger pads.

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weirdly enough i did see the rare beast the urologist years back when this all started as one of the symptoms was constant urinary tract infections. They tested the speed of my passing urine and the guy said it was really ridiculously slow. I told him yes i spend many minutes in the loo lol. He put me on long term evening antibiotics and said it was a wait and see thing.

well i have had scans with full bladder and then seeing how much was left and at the time it was borderline for catheter. I haven’t bothered since, i don’t fancy it.

I am just trying to cope with it all at the moment and do try to empty as soon as I need too or suffer the consequences.

the trouble is the appointments for urologists and neurologists are pretty long here at the moment because so many people sick.

Its taken 9 weeks so far to renew my blue badge, and i get enhanced PIP. they have only just got to my application form. Seems living in my area is an unhealthy choice sadly.

Interesting blog from Professor Giovannoni in response to the question - What can I do about my bladder?

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Had similar problems. Eventually, having seen incontinence nurse, signposted to consultant. Diagnosed with prolapse x 3. Had operation last July and bladder much improved. Take heart and get checked out.