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TOPIC: Late onset generalisation/bladder involvement?

Late onset generalisation/bladder involvement? 4 years 6 months ago #2400

  • Supergran
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I had the opposite problem in that I woke up one morning and could not get out of bed for back pain GP came to my home..ordered an ambulance...outcome was the dystonia affected my bladder in that it would not empty and I had no sensation of needing to go....had been over 24 hours...the dystonia had compressed my spine and I got treatment for my spine and the bladder corrected itself

sending you a big hug I know how distressing this can be

Christine X
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Re: Late onset generalisation/bladder involvement? 3 years 11 months ago #2920

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I am interested in the posts about bladder problems I was admitted to hospital to have my bladder emptied by catheter and managed to fill 2 bed pans whilst the nurse kept saying 'and you did not feel like you needed the toilet blah blah' I have since had a number of urine infections and wondered if it was related
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Re: Late onset generalisation/bladder involvement? 3 years 11 months ago #2921

  • Anke
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Hi Christine, in my earlier posts on this subject I mentioned the difference urinary sphincter Botox injections made for my bladder problems - from having constant urgency problems and even having to self-catherise, to almost going back to normal. However, I've now had DBS in July last year. At the point where my settings were still low and the effect of the pre-op Botox was starting to wear off, I again had to self-catherise at times. But now that some time later my current settings are pretty much controlling my (generalised) dystonia, the bladder problems have also disappeared! So yes, I'm convinced that dystonia can definitely affect bladder function. Not sure why you are not experiencing urgency - guess a lot can go wrong with "signalling" within dystonia, but difficulty voiding was my problem too - the sphincter just wouldn't relax.

Perhaps it would be worth asking your Dr. if he/she would be willing to give you a Botox try for your bladder issues. The urinary infections you've been experiencing are also typical as germs can hang around with this type of problem, and this can eventually cause secondary problems (sorry). The Botox injections last about 8 months, which is so much better than the ones for CD (which in my case eventually only helped for just about a month).

Christine, I really hope you'll find a helpful solution, and wishing you all the best, Anke
Last Edit: 3 years 11 months ago by Anke.
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Re: Late onset generalisation/bladder involvement? 3 years 11 months ago #2922

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I think the signalling was a problem and eventually my bladder was so full it backed up towards my kidneys I have never known pain like it and that is when I was hospitalised more recently I have had 2 chest infections within 3 months and 2 urine infections within 2 weeks....this means 2 lots of antibiotics and 2 lots of steroids...I am feeling a bit miserable tonight and a bit emotional because I still have another day of tablets left and my back is getting really sore as the day has gone on and I am burning down below my feeling is I should go to out of hours with a sample and get it tested. I have severe acute generalised dystonia and when I visited the GP this week he did agree that if there is a problem it should be looked at asap to try and keep the dystonia symptons better managed because it affects my breathing when it gets bad and I have to go to hospital in an ambulance and have on a number of occassions ended up in resus....on one occassion I did go unconscious it was the worst experience I have ever had in my life I felt like Edward Scissorhands was in the cubicle and he had taken me by the stomach and stretched me out and when the nurse flattened the bed and shouted can I get some help in here please....I straightened out with the help of edward Scissorhands and the rush of air coming into my body made me feel like the throat area had turned inside out. I would rather go through child birth than go through that again and that is saying something as my labours were over 30 hours.... any way thank you for your ears I think I am going to make the call and go and get myself tested its good to have some one to help you listen to your own thoughts and make sense of them. You take care and god Bless you XX
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Re: Late onset generalisation/bladder involvement? 3 years 11 months ago #2923

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I am just back from hospital I have tablets for a week bladder infection has now become a kidney infection with bladder not emptying so have to see how things are tomorrow and may have to go back as this is now affecting my kidney. i went to Asda shopping on way home as I am planning a day in and felt the need for a treat. I was half way round the yoghurt aisle and my arm spasmed in a twisted pose.....thought I am now looking like a shop lifter and better get some help so the staff helped me finish my shopping OOOPS!!!
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Re: Late onset generalisation/bladder involvement? 2 years 10 months ago #3484

  • Joe82
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Hi Anke,
I've been reading all your posts re bladder problems connected to distonia with great interest. My mother in law has been in hospital since June 2014 after a series of severe distonic storms. She has effectively been learning to speak and walk again since then but over the past four months she also developed urinary retention, which means she cannot voluntarily pass urine and has to be catheterised to do so. She has seen a urologist and they mentioned thinking it might be a problem with a 'floppy bladder', where the organ loses its muscle tone. This would be more likely to be an after effect of a spinal operation she had in 2013 but would not be linked to dystonia as the bladder is formed of smooth muscle. Anyway, the upshot is that she has been going between a physio rehab centre and general hospital with a succession of infections, contracted as a result of her not being able to fully empty her bladder. Hence she has no obvious prospect of ever getting well enough to go home.

What you say about the urinary sphincter tonus is really interesting and not something that has been mentioned yet by any of the many, many doctors she has seen. It seems like none of them have a strong enough grasp of the whole picture to take a holistic approach to her treatment. I wonder if you would be willing to let me know the name and contact details of the doctor that helped you? It seems like they would be able to offer a lot of insight with my mother in law's case.

Thank you!

Joe
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