Hi all.So suddenly urology have decided they need to fully investigate my husbands urgency to urinate, despite his diagnosis of MSA at the start of 2022.
Prior to his diagnosis, I tried to get this investigated several times to no avail. I'm as flummoxed about why they want to do it now as they are about why he's urinating as much as he is. On his most recent visit they even did an ultrasound on his bladder. It's not working to full capacity. Hmmm, I could have told them that. 😂
Has anyone else had this post MSA diagnosis? It just seems a bit odd that they want to do it now.
Sarah the bewildered
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Schmall
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there are Urologists with a particular interest in neurological conditions. Getting a proper assessment of how the bladder is emptying is really helpful in terms of getting help if the symptoms become troublesome and there are medications to help, or advice about intermittent catheterisation and then possibly heading towards full time catheter or even supra-pubic catheter. Don’t be perplexed, be grateful that someone is interested and get all the advice and support from someone that you can. Sometimes knowing about options before they are actually required is very helpful
My husband’s first main symptom was going into complete urinary retention and once other symptoms started it was part of the catalyst for getting to Neuro and to a diagnosis.
Thanks Diane.That is really helpful. That appears to be the sort of investigations that are happening. That makes sense. Now I think about it, he did mention a catheter to the neurologist last summer and I think the referral came from her.
Hi Schmall, I too have been diagnosed with MSA. I have been prescribed Mirabegron to treat my urgency problems after trying something else. Seems to work pretty well so there could be some hope for this particular symptom.
Mirabegron can help for some cases of neurogenic bladder such as with MSA but note that it depends on the specifics of the bladder dysfunction. With MSA being progressive this can change with time and it might change suddenly overnight.
Within a few weeks of starting Mirabegron I went into full retention one night, ended up in A&£ for 10 hrs,very painful and when eventually catheterised they got 11000ml !!! After that I failed TWOC 3x and went permanent foley, Mirabegron then pointleess.
Be prepared if on Mirabegron for something similar as a possibility one day.
I had a urodynamic test about two years after MSA diagnosis to determine if I had a neurogenic bladder. I do have, and it strengthens the case I have MSA.
Good luck- the more information I have, I’m better equipped to handle new issues.
My husband Phil showed signs of urgency pretty much at the start if his diagnosis. It was difficult getting him to the bathroom on the many occasions he asked, particularly through the night and I was always worried that he would have falls . He started off self- catheterising and eventually was fitted with a catheter, following a stint in hospital. Having the Catheter was a breakthrough and made life so much easier. Best wishes, Shirley
That sounds very much like Sean. He now has a urine bottle next to the bed, one in the bathroom that I can grab (and thanking my lucky stars we have wooden floors and not carpet) and one in the boot of my car. Poor man.
It was one of the early symptoms for him too. Hopefully they'll find a better solution.
My Husband's bladder issues started like Diane's husband, with urgency but now I think that it was incomplete emptying so he was "full" all the time. He now has a nice "normal schedule" of using an intermittent catheter twice during the day and I put a foley catheter in overnight. That way he has an empty bladder most of the time. I know each case of MSA is individual, but this inability to empty a bladder seems typical. Good Job, Schmall, keep being an advocate for your husband, as I find that many times I am educating his Dr about this less-known illness.
My husband also started with urinary frequency which gradually changed to full retention. Watch it carefully because in his case he had toxins build up in his kidneys and they started to fail. He spent three weeks in the hospital and now has a permanent foley. Now we have utis frequently. His urologist said for us to get used to them as very little can be done.
Do not be scared of UTIs, have a plan to minimise risk. I certainly do not agree that nothing can be done. I have had indwelling foley for 15 months, had 3x UTI in first 6 months but nothing since . Key is cleanliness and fluid intake,monitoring urine for colour,cloudiness,debris,getting catheter changed when flow gets less. Someone ought to write a little book about catheter care though probably The Famous Five Go For A Piss might not be the best title despite Timmy's expertise.
Do not be afraid to ask your consultant urologist for a clear explanation as to what investigations are proposed, why, and what will the results mean. You can do this before the appointment and remember the patient always has the right to refuse / not consent to any or all of it.
My multiple urological problems were under investigation well before PD/MSA DX and it was only by luck that I avoided an unecessary TURP operation as at no time did the urologist suspect neurogenic bladder despite PVR of 200-250ml.
This is not uncommon, a fair percent of men with MSA will have had a TURP which will have been useless.
Yes, my husband had urological problems early on years before MSA diagnosis (last year). He had an unnecessary TURP operation followed by a bladder neck incision operation a year later. Both made his continence problems far worse. He then went down the route of intermittent self catheterization, but was having to do it so often, including several times at night, that his danger of falling with his blood pressure issues on top, made it too risky for him. He then had a urethral catheter for several months and now a supra pubic catheter. This is much better than him having to use the loo so frequently, but he now has problems with it blocking after a few weeks. He drinks plenty and I now do 3 x weekly flushouts of the catheter so we're hoping this will improve things. Hope you get on well with the investigations. All the best.
Bladder issues are a common early symptom in MSA and can change over time. They can be managed in varying ways depending on the specific symptom. The MSA nurses can discuss this with you individually. If you find you are experiencing a lot of Urinary Tract Infections, do contact us at the MSA Trust, as we have a factsheet we can send to your GP about how best to manage these.
That's brilliant, thank you Samantha. We may be in touch depending on the outcome of all these investigations. It's a baffling minefield that'd for sure.
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