Hi. For the men on this forum, do any of you feel that since taking Riluzole you feel the urge to pass more urine frequently.
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Piglet Infrequent side effectsof Riluzole, regardless of gender, include urinary urgency and urinary incontinence, as well as a slightly raised risk of getting a UTI.
Are you sure it's not a UTI? xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Ellie @Doug. Thanks for your response. No definite no infection. My husband appears to be obsessed with going to urinate..Yes Ellie I read about Riluzole potential with frequency but he’s been taking Riluzole for over four years now. I’ve got the district nurse coming on Monday so will discuss avenues with her. Many thanks to you both.
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Originally posted by Piglet View Posthe’s been taking Riluzole for over four years now.
Sensitive question: has he other 'odd' behaviours? xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Ellie yes Ellie he does. Has cognitive changes, and I believe he has become preoccupied with urination throughout the day and night. Some times he needs to go other times ther is nothing to pass. G p has looked into prostate medication with little effect and a small amount of Lorazepam at night. Instead of getting up 4-5 times a night this has reduced to 2-3.
Hopefully get some help tomorrow when district nurses come. They mentioned a catheter but then said he would possibly get more UTIs as he doesn’t drink a lot. He may also not be aware he has one and try to pull it out🤭🤭xx
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Originally posted by Piglet View PostI believe he has become preoccupied with urination throughout the day and night.
All the best for tomorrow. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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matthew55 My husband is having a bladder scan tomorrow following todays visit by district nurse to rule out any physical cause but I’m convinced it’s psychological. They may try a catheter in the future. If you don’t mind me asking. Do people with a catheter know when they are passing urine, do they get the sensation with those without a catheter. Xx
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I think Stephen could reside in the bathroom. He can walk past the bathroom door and make it to the kitchen and decide he needs the toilet. It comes on quickly. He has a nappy and certainly pees all night . I thought the night time problem was because of finding it difficult to get out of bed but it continues during the day. I've never visited so many toilets. Could definitely do with more disabled toilets simply because its embarrassing having to help him in the mens loo. He got trapped in the toilet on the ferry. He couldn't find what he was looking for 🙄 another guy in the loo wouldn't help him so I had to go in and sort him out but as the doors on the ferry are difficult to pull open he would never have got back out. Think I might ask the community nurse about a uti but he doesn't mention pain. That's if one ever turns up again. 🙄when i can think of something profound i will update this.
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