Thankyou Sssue for such a detailed reply it really helped much appreciated x x x
I really hope the Betmiga helps Eve, so far (8 days after), I’m still waiting for the botox to make a difference. It hasn’t yet. If it ever does I’ll let you know. Likewise it it utterly fails then I’ll let you know that too.
Bladders. Who’d have a neurogenic bladder? It’s miserable. Never knowing whether you’ll need to loo again 5 minutes after emptying.
I count myself as fortunate in that I’m not cursed with incontinence and the ensuing soggy pads / pants. But I’m still not happy with it.
Hopefully soon.
Sue
Hi Sue. How’s it going? Botox kicked in yet? I’ve been on Betmiga for two weeks now. Today has been quite a bit better, so fingers crossed its going to solve it. Eve xx
Hi Eve
Hmmmm 3 weeks yesterday. ITS NOT BLOODY WORKING yet …
In actual fact the bladder spasms are worse now than before the botox. I want to go all the damn time. Still using a minimum of 6 catheters a day, often more as I want to go so much of the time.
I’d be feeling very very despondent about it (given that I was told ‘it could take up to two weeks to start working!’) Except that a dear friend asked her continence nurse about it on my behalf (thank you Poll!), and was told that it can take longer for the longer lasting botox to work.
That made me feel very relieved, I was imagining feeling like this for two whole years since this type of botox is supposed to last that long. It’s supposedly a good thing to have the 2 year variety rather than the 6 month type. I did ask before I had it if there were any chance of side effects making it worse but was assured that it would either work or not, but that there were no reported adverse effects if it didn’t work. I was all prepared to ask for the 6 month variety if there was a possibility of it making a bad situation worse.
I am currently praying (in an atheistic kind of way) that it’s just taking time. I am both thankful that I’m not actually incontinent since I’d probably be dribbling wee non stop. But then again, I wouldn’t be thinking ‘is this a genuine need for the loo or not?’
I will report any further developments.
Sue
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Hi all (especially Eve)
Well it’s now 4 weeks since the bladder botox treatment and there doesn’t appear to have been any lessening of the spasms. I suspect that in actual fact botox on the bladder is of more use to those people who experience urinary incontinence (possibly with bladder spasms) rather than just bladder spasms with no incontinence. I therefore tried to get some info from the doctor who performed the procedure and also to find out when I would have a clinic appointment. So, no info was available from the doctor concerned because he’s retired!!! And there didn’t seem to be a follow up appointment booked for me.
So on Tuesday this week I went to see my GP, explained the problem and suggested that I try taking some oxybutynin and although it’s metabolised by the liver, take the risk that it might raise my LFTs. She agreed that it’s worth the risk as my LFTs have now been within the normal range for two months (after Betmiga caused them to rise) but she wants my blood testing after two weeks.
Thus, I’ve started the oxybutynin - so far there’s not any noticeable difference, but it’s early days. The major problem, it seems to me, is that I could have tried this before having the botox. I was told the botox would stop the bladder spasms. It now seems that it does not. And many people who’ve had bladder botox subsequently also have to take a drug to calm spasms.
I had of course tried Vesicare and Betmiga but had side effects from both. It’s possible that I’ll have raised LFTs from oxybutynin and the other drug to calm bladder spasms, Tolteradine, is also metabolised through the liver so I might find I can’t take any drugs. But all I can do is try.
It’s flipping annoying, to say the least, that the reason for having the botox is no better, in fact, slightly worse, than before.
Yesterday however, I did at least receive an appointment letter for about 3 weeks time. So I shall be bringing all this up then. And I will have had my blood tested before the appointment so will know whether I’m OK taking the Oxybutynin or not.
Sue
Hi, talking about Botox I had it in my legs and to be honest it hasn’t helped my leg spasms either. So not sure I will be having any more.
Polly x
Hi
As you say, annoying at the very least. Oxybutynin gave me a very dry mouth. I’ve been on Bermiga almost three weeks now. I thought last weekend it might have started to work, but I spoke to soon, Saturday must just have been one of the occasional better days I get from time to time. I’ve to persevere for another three to six weeks before I can be referred to urology, then I’ll no doubt end up on a waiting list. I’m still hoping though.
Good luck Sue.
Eve xx
And it all sounds so wonderful: “got spasms? Here, inject a bit of botulism into it, that’ll sort you out!!” If it came out of a ‘medical’ textbook written in the 15th Century, we’d all laugh our heads off at the silly idea!
Sue
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Maybe we should try leeches next?
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You know what? If I thought leeches would work I’m getting desperate enough to be willing to try!
Eve xx
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Back again, three months since I first posted in the belief I was about to be referred to Urology, hopefully for Botox. I’ve been taking Bermiga for five weeks now and the urge incontinence is as bad as it’s ever been. Despite self catheterising six times a day and trying different meds/doses/changing the time of day I take it I’m still dealing with soggy pads at least six times a day, sometimes more 
It’s manageable at home, and even okish in public toilets/hotels etc where there are accessible toilets and disposal facilities, but problematic at other times, especially in the morning for some reason.
Anyway, on Wednesday I saw my neurologist - nice man, doesn’t look old enough to be a consultant, and very easy on the eye! He’s going to write to my GP asking him to refer me to Urology. Wonder how long a waiting list there is to be seen, never mind the waiting list for the procedure if they decide I can have it.
My next problem is attending a funeral next week, many miles from home. We’re staying in a hotel, but it’s likely that my OH is going to want to spend time with the bereaved family at their home, not something I relish. I’m told “we have a downstairs loo, so there’s no problem” If only it were that simple. It’s going to be a low level loo, they always are, there won’t be anything I can use to lever myself up once sat on it, and there won’t be facilities for disposing of soggy pads sand catheters. I suspect I’m going to suffer the indignity of everyone knowing chapter and verse of my bladder issues, and the humiliation of someone having to come in to help me up off the loo
The deceased is a long time friend of my OH, and he cannot be reasoned with on this one. He says I’m finding problems where there there might not be any, and that “we’ll manage” He won’t be the one to be embarrassed and humiliated though will he?
However, I digress (sorry for the long post to any of you who’ve got this far)
Sue, how are you getting on with the oxybutynin?
Eve xx
Oh Eve
I do feel for you. Basically I very rarely agree to go to anyone’s house for that very reason. As it is, my bowels and bladder have become far too prominent in conversations with my various friends. I have no solution for you re the upcoming funeral. Far too often, I send my OH on his own to such things. And I don’t suppose taking your own folding loo frame is a solution that fills you with joy either!
The Oxybutinin has become known as the poxybutynin. Dry mouth, nose, eyes, throat. If I’m awake for long in the night, I find I can’t breathe through my nose, so I’m breathing through my ever drier mouth. It doesn’t seem to make much difference to the spasms. But maybe some. I’m actually now waiting for blood test results to find out if it’s affected my liver enzymes. To be honest though, as I have a urology appointment next week, so long as my LFTs haven’t gone up, then I’m going to ask to swap to a different drug for bladder spasms. One of the things that’s bothered me about it is that someone drew attention to a Barts Blog posting from last year in which they’ve said the old style anticholinergics like oxybutynin can cross the blood brain barrier so can affect cognitive function. Obviously if my LFTs are up, then I’ll have to wait till they come down again before changing drug!!
So that’s crossed oxybutynin, Betmiga and Vesicare off my list of potential bladder spasm drugs. Maybe next I’ll try Tolterodine. Have to see what the urologist says.
And I didn’t find Betmiga was any good at all for spasm management, and that was before I had to stop because of LFTs. What the urologist said about Betmiga was that it suits some people and appears to be a miraculous drug, but for others (you & me) it’s useless.
What a long winded way for the *}%}<~ NHS to finally get you in front of a urologist, never mind actually having the Botox. One thing I will say in its favour, is that I’m pretty sure it will help you with the incontinence. Earlier today I was so desperate for a wee, I was convinced I was about to wet myself, I still had to use a catheter when I got to the loo.
Although, managing expectations is essential it seems with regard to Botox. A nurse told me the other day that every batch has different levels of success; because it starts out as a living organism, they can’t definitively measure the strength of each batch. So that’ll fill you with confidence I’m sure!!
Sorry for not being able to muster up a huge amount of positivity with regard to bladder management right now. My bladder is still in charge and I’m her bi*ch.
Sue
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l feel for you all as bladder and bowel incontinence is one of the most distressing and life-changing problems with MS.
lt was one of the first symptoms l had when l started with MS -34yrs ago. For years l struggled with soggy pads - and not being able to go out anywhere. And the awful meds the urologist prescribed. ln fact l told my urologist that he should try taking oxybutinin himself before prescribing it to his patients. Detrusitol XL - was a bit better - but still that awful dry mouth. Now l see on the Barts Blog that they now have found that oxybutinin is very bad for us.
20yrs ago - l had a SPC fitted - which changed my life. Not a perfect solution - but still a game changer. Since then l started taking LDN - which has the benefit of helping with bladder control - but as l have a SPC l cannot tell.
Fifteen months ago l joined the ‘Biotin for Progressive MS’ facebook group. l have done well on Biotin and will continue with it. But so many folk in the group - several thousand now - have found to their delight that they have back their bladder control - which must be amazing for them, to be able to go through the night without getting out of bed .Originally, the trial for biotin was for help with Optic Neuritis - but it was found to help stop progression and de-myelination. Although the trial was for Progressive MS - l see that many with RRMS also have joined - and why not.
Botox would not be of any use to me - as you do need to self-cath - which brings the risk of UTI’s and l could not manage to do it and my lack of mobility would make it difficult. Having a SPC means l can keep some of my independence and self-esteem for longer.
The pure pharma grade biotin powder can be bought from US - Bulk Supplements or Pure Bulk US. lt cost me for a years supply £120 . l have some little micro scales that l weigh it on as 100mg is the size of a tiny pea. lt has given me lots more energy and l feel stronger when l stand - and a thicker head of curly hair and nails that grow very quickly. But l am hoping it is the invisible improvements that are happening. lt is not a drug - it is a B7 supplement.
l also follow the Dr.Coimbra high dose vitamin d3 regime. As l have never been offered any meds that have not caused me terrible side-effects - l now do my own thing - taking charge of my own illness - because l can.
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Hello again. I’ve had vesicare, Tolterdine and oxybutynin. The dry mouth from the latter was intolerable, although I’d have coped if it had actually worked.
I’ll have to cross my fingers, and maybe my legs next week for the funeral next week!
I wonder if doubling up on pads is feasible? Maybe I should try.
Eve xx
Maybe full continence pants lined with pads? And accept that you’ll just have to take your partner into the loo with you once at least. And accept that you’ll look like the Michelin Man. With a big handbag.
Oh it’s a misery, maybe get your OH to agree on a time limit? Is this feasible?
I hate my damn bladder. And my damn bowels. As well as all the other indignities this bloody disease inflicts on us.
Once upon a time, I had freedom of movement. I had independence and privacy. I could choose what to share with people and was free to keep my private business just that. Private.
Sue x
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Hi Eve, cant remember, sorry, but do you use a wheelchair?
If you do, maybe there is a silver lining in this particular cloud…whenever I bypass my catheter and wet myself, at least it isnt obvious to everyone, as being seated, it doesnt show.
Even if you use a wheelchair part time, you could use it for the funeral. And you could have a large bag on the back to conceal the spare pads, eh?
Any good?
pollx
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Yes, I do use a wheelchair. The crematorium isn’t going to be a problem. The wake afterwards isn’t going to be a problem. Both venues are accessible with accessible toilets.
The problem is Wednesday the day before the funeral when my husband has accepted an invitation to spend all afternoon and evening at the family home. It’s going to take at least six hours to drive there from where we live. He refuses to acknowledge I might find this difficult or consider my needs or feelings. I really feel like his friends family are more important to him than I’ll ever be.
He’s been told there is a downstairs loo. We’ve not been to see them since they moved to this house. He ought to know by now, not only does it need to be downstairs there needs to be something I can use to lever myself up again once I get sat down. It’s not likely to have a raised seat either compounding the problem. So I can see me having to shout for help and suffer the indignity of being helped up from the toilet.
I doubt very much that I’m going to be able to take Tena pads and catheters in discreetly, so everyone will know, nor do I expect to be able to dispose of soggy pads and used catheters discreetly either. Stuff them in my large handbag I suppose. As if it isn’t distressing enough having continence issues the whole flamin’ lot of them are going to know.
Then there’s the meal we’ve been invited to share that same evening. I can’t use a knife and fork any more, so I’ll also have to suffer the humiliation of having my food cut up for me. I know exactly what’ll happen, my husband will watch me struggle before asking, “can you manage.” He knows damned well I can’t! But hey, why not just draw even more attention to me.
Then, Friday we have the long drive home. The traffic is always much worse on Fridays, so it would make sense to leave straight after breakfast, but no, we have to spend the morning at the family home - same problems apply.
Thanks for reading and offering advice Poll. I just want to cry, I’ve tried broaching the subject with my husband. It just made him shout at me because he thinks I don’t want to go and that I want to stop him going. I just want him to meet me half way, but it’s got to be his way or no way! I can’t manage at home alone for more than a few hours so I have to go.
He takes really good care of me, but some things are just not negotiable. This is one.
Eve xx
ok…if nowt really helps then the only alternative I can see is not to go. There has to be someone who will stay with you just this once…where are you? come stop with me!
pollx
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Aw Eve, I get it. I don’t have any solutions for you, I just feel for you. It’s flipping miserable having bladder problems coupled with general disability. I would have very similar problems in the same situation. And sometimes our OHs just don’t get it. And see our getting stressed over our physical limitations as complaining and not wanting to go. Of course you don’t want to go! If only he could empathise and understand the difficulties you’re facing and the ways in which he isn’t necessarily helping or even being in the right frame of mind to help.
In your situation, I’m pretty sure I’d be having those feelings.
And I’m also pretty sure I’d not be able to express my worries to my OH in such a way that he’d understand. There are some things that are very difficult to live with and end up making you feel embarrassed and uncomfortable. You are coming face to face with several all at once, incontinence, eating problems and the impossibility of using a standard loo because of disability.
I really hope you can find some way of explaining how he can help to make these things easier for you.
Sue x
Sue, thank you so much. Someone who understands! I’m not unwilling to go, I’m pretty determined and though I say so myself will rise to a challenge.
I’ve tried to explain to my OH as reasonably and gently as I could but all it did was make him shout at me - I don’t know if it’s frustration or whether he thinks I’m being deliberately and particularly awkward or difficult. It brought a martyred “We won’t go then”. We will, as I’ve already said his plans are non negotiable.
Poll, actually there isn’t anyone who I could ask to stay for three days. We don’t have a proper spare bedroom, just a sofa bed in the loft room. There are people who could pop in from time to time to help though. My oldest friend lives thirty miles away and would willingly have me, but that would involve getting me upstairs, or bringing a bed downstairs, no shower for three days being unable to get up and down stairs, and to be honest I’d have the same problem with their downstairs loo that I’m going to face at OH’s friends home, but I’m comfortable enough with her about the bladder and eating issues.
If I simply refuse to go and arrange for people to pop in my OH will make a martyr of himself and stay at home, and doubtless never let me forget it!
No, I have no choice. I’ll share my experiences next weekend when we’re home.
Thanks my lovely forum friends
Eve xx xx