We now have the confirmation and unfortunately we're continuing our membership.

[Boyyo]

Hi everyone again,

I posted at the end of my previous post but that's probably not right, so I thought I'd start another one.

Yesterday we had a meeting with the MSA consultant and another member of his team in Southampton (UK), and it's confirmed that J probably has MSA...'probably' because as we all know diagnosis is an assessment of a multitude of symptoms, all divided by time...et voila !!

So, here we are, and now we have to fully digest what that means.

In the first instance deciding whether or not to have a a Suprapubic catheter fitted...anybody got the T shirt on this one...or knows more than we do?

All info gratefully received.

Cheers

Rod

[FredaE]

Bladder problems with MSA come in two forms. Retention and incontinence. With retention you are more likely to get uti s (urinary tract infections) with urine hanging about and festering breeding infections which cause no end of problems.. For this a supra public catheter keeps things on the move... and you get fewer infections. On the other hand there is a risk of uti from the catheter itself. I think I would talk to your nearest MSA nurse on the MSA Trust for advice on this one

FredaE

[Hidden]

Hello I'm sorry it is quite a blow when you get it pretty much confirmed. My dad has been lucky in that he has hardly had any urine infections. So used a sheath catheter (conveen) successfully for years. They stick on and a warm wash cloth helps to remove them (change once every 24-hours). at one point he started to get a little bleeding due to pressure/inflammation of the lower urinary tract area so we had to switch to pads. It was a clever GP that realised this, rather than just assuming it was a UTI. But this was after years of conveen use. You need to get the sizing exact and they occasionally fall off or leak. But overall they've been pretty successful.I guess it's quite an individual decision as to what will suit the person best. Kx

[Boyyo in reply to Hidden]

Thanks Kay....we'll be posting what we do and how it goes in the future.

[Yanno]

Hello Boyyo and Jane,

The conveen route is obviously not the one for you as J is Jane not John. Whilst I/we know little of Suprapubic catheters we know from first hand knowledge the need to properly empty the bladder to avoid the inevitable UTI's. In Worcestershire we are lucky enough to have a really good continence nurse who has been a significant help on this front - maybe you will have one local to you.

We were shown a number of alternative catheters for Jax and in the end we manage very well through 'self' catheterisation albeit this may not be right for everyone.

Take care, Ian

[Boyyo in reply to Yanno]

Yes, its Suprapubic for J, if indeed she chooses to go that way....thanks for the info.

[Janeyl]

Oh, Rod - “probable” is as close as any of us gets to a living diagnosis.

My husband had MSA, so I don’t have the “female” catheterisation T shirt, but my instinct is that our lady plumbing is a bit more complicated than yours, so I would (if I was living with MSA) be inclined to go for a supra-pubic solution, on the basis that that it might be easier to manage and lead to fewer UTIs, although they will always be something to be dealt with.

Get out and do something fun. Do it before winter sets in - make videos, love and laugh. Now is as good as it gets - make the most of it❤️

[Boyyo]

Thanks Janey, yes that's take on things too, and J just needs some time to get to terms with things at the moment.

Cheers.

[Daleston10]

My late wife got a superapubic cathator and it was a total nightmare for blocking up unfortunately she had to go into the local hospice and they give up with it as it was causing to many problems