I am more likely to sleep through the night if I drink right through until bedtime - concentrated urine is more irritating! Plus dehydration at night = increased spasms.
Unfortunately, pwMS often withhold liquids for nocturia that is actually caused by sleep apnea. Hormone changes due to low oxygen causing bladder to wake us up vs becoming hypoxic in sleep.
Dehydration PLUS oxygen deficit is a sure in to progression.
Low serum progesterone or estrogen can also cause nocturia in menopausal women.
***Every person with MS needs a sleep study.*. Any weight, any age, snoring or not.***
This is a maddening situation. It is compounded by the fact that I think I get urinary tract infections that are not picked up by ordinary testing. My doctor had been prescribing antibiotics as I said I needed them. And then I developed a reaction to sulfa drugs. So I just decided not to take antibiotics. I can see it in my walking. But my doctor is so upset by the constant antibiotic intake that I cannot take them when I know that he doesn’t think this is a way to go. so I’m not taking antibiotics and I’m not getting around as well as I can when I do take them.
Possibly. But they may have been referring to a biofilm or interstitial cystitis, where the bacteria, penetrate into the wall of the bladder. Both these problems are very hard to treat. This is why d-mannose, alkalisation of the urine and sodium hyaluronate (Cystistat) are used.
Some people with MS with recurrent infection benefit from taking daily urinary antiseptics. In our centre we cycle every 3-4 months between cefalexin, trimethoprim and nitrofurantoin. In the past we also included nalidixic acid, but the latter has been stopped because of off-target side effects in particular tendon ruptures.
I was cycling through antibiotics, my ID doc prescribed me grudgingly, but when I developed such a grave reaction to sulfa trimethoprim, he was seemed so distressed, I stopped and did not fill the prescription he had written. I’m now trying to combat the spasticity I think have the infections give me.
Thank you for this post! People often ask me why I drink so much liquid if I have frequency/urgency issues, and they don't understand that, due to recurrent UTIs, it is no joke if you don't drink anything during the day.
By the way, thank you so much for long and informative post about bladder issues (Infection: Managing your bladder to prevent recurrent UTIs) - it helped me to explain all my bladder issues to urologist (for example, I didn't know that hesitancy was MS related) and to discuss treatment options. Hope something will work out for me. Best regards!
Hi Belma, hesitancy is huge. My kids used to be outside the bathroom door saying “mama, mama, are you done yet?” while I hadn’t even started! It was worse in restaurants or being out where people were waiting. Wishing you the best!🌷
Thank you! One of my wishes, when we sell this appartment and buy a new one God willing, is to have 2 toilets,one only for me,so I could avoid those situations! Urologist gave my a medicine which is given to males for prostate issues,and it helped wth hesitancy a lot!
Hi Belma, I’m glad it’s working. The only one I tried was tamulosin (flowmax) and I was allergic to sulfa in it. :/ So I don’t know if it worked. Sounds good!🌷
It's an interesting observation. In my case, before I was diagnosed and until the last few years I was clearly dehydrating myself, but there was no strategy behind it. I would go all day without a drink and wonder why people carried water bottles with them. However, if you sat me at a table with a bottle of water on it I would guzzle the lot and then notice that I was thirsty. It was the same thing with smell. The house could be burning down and I wouldn't notice it. As I am better than I used to be both the need for water and my sense of smell is now appropriate. Maybe something subtly changes how we think of thirst and smell.
Thirst is a CNS phenomenon and is driven from the lamina terminalus in the hypothalamus. It is feasible that MS involvement of this area could affect thirst. You may want to read this online description on the control of thirst.
I do dehydrate myself when I know finding toilets is going to an issue but one thing I that helped with the frequency is to drink smaller amounts more often.
Luckily I’ve only had one bladder infection which was really horrible and when tested at the b&b clinic it was found I wasn’t completely emptying my bladder. I coincidentally found what I think is one solution for that… while trying the wim hoff method is when having a really cold shower or preferably bath before going to the loo then I’m quite sure my bladder has shrunk an emptied then!
I’ve been living with MS for 43 years and it’s taken most of that time for me to have become a believer. Hydration is important for people with MS. But, a few other things - like medication and exercise - are needed to keep my bladder balanced.
Have you actually spoken to a person with ms? My questions are- how on earth does one do pelvic floor exercises when your pelvic floor muscles don't work. Resist urinating- are you kidding? Exactly how you suggest doing this when again the muscles involved don't work? Anticholinergics- dry mouth, constipation, urine retention, dizziness, confusion. People with ms do what they do when they are faced with an impossible situation and few alternatives
Thank you for this, Prof G. This is certainly pertinent to me as of now and always has been. I’ve been dealing with a neurogenic bladder for 30+ years. Oxybutinin XL worked well for a long time. One thing I learned early on was to never, ever cut down on water/liquids, and if I felt I had a UTI brewing, drink, drink, drink as much water as possible. Often, that was enough in the old days to defeat it. Though my damaged bladder is awful at night, I am doing phenomenally better during the day with bitter cranberry and estrogen, I push plenty (a liter plus) of water, plus two mugs of herbal tea daily, and find I am fully emptying during the day. I use quicky kegels if need be. (Here’s a shout out for estrogen, which we with cancer histories were denied after they pulled the Swedish vaginal Estring!!) I have had only one tiny stone, which I passed after a urocystogram, but admit I am apprehensive about an upcoming cystoscopy to examine a urethral diverticulum which has thankfully not become a stricture. She will also inject Botox. Question: Has anyone had Botox? I have not had to catheterize much after estrogen and cranberry during the day, but I have assented to Botox, since nothing works at night, and realize I may have to catheterize more. I don’t understand why desmopressor is not available in the states. I also don’t understand why antibiotics aren’t rotated. Interesting re nalidixic acid (Negram). I took it for years in my 20s for mysterious occult blood, which begs the question how long I’ve had this disease. My kidney function so far is fine. Not needing to catheterize as much is a relief, because it significantly reduced UTIs. Great post!🌷
This is fascinating! I feel like a 2024 goal of mine will be looking into bladder exercise and control to see if I can't improve my bladder. I avoid drinks all day if I am out and about with my kids - constantly finding a bathroom with two young kids in tow is a nightmare so I just avoid liquids. Duh, clearly not the right tactic, but it's been my go to 'solution'!
I am left again, asking myself , what is important here? The only thing I see as important is UTI’s. The rest of the complications that have been mentioned can be monitored with routine blood work and urine tests, which here in the US, come along with healthcare. Other monitoring you can do yourself (depression, cog. functioning, physical performance). So yes, I don’t over-do it with the water. I note that when I drink even a half liter, it takes less than an hour to bring me to the toilet, sometimes 15 minutes. My bladder apparently does not fully empty (2-300 cc’s), there is frequency, urgency and nocturia. I have BPH with obstruction, controlled very well with Finasteride. Tamsulosin helps with the obstruction (I think that’s what it’s for.) I’ve had numerous kidney cysts for a long time (no PKD). Reports say detrusor and sphincter dysenergia, neurogenic bladder, mild hydronephrosis (1 kidney). My understanding is that if there is obstruction, extra liquid can stress the kidney (i.e. hydronephrosis) I am considering a “rotor rooter job” (TURP), as that helped my father (who didn’t have MS). Brings up the issue of not forgetting we MSr’s are subject to all the other ills of getting older and many things may not be due to MS.
It all sounds very scary. Is a bladder that never empties scary? As far as I am aware, as soon as it empties normally, it begins filling again. There is urine accumulating and present all the time, normally. Perhaps more water keeps the system less toxic; I’ll think about that one. I don’t like the idea of hydroephrosis because I have obstruction, so extra fluid does not motivate me.
So UTI (which I have yet to experience) is reported to increase with catherization. UTI’s are reported as one of the increased causes of death in PWMS. I don’t read anything about a partially filled bladder creating infection; you need bacteria. I would think that catherization is one way to invite bacteria, and the research, like I said, shows that because more people die when they catherize. Wearing a good diaper and knowing where the toilets are when out, is how I manage the problem. Certainly trying to catherize yourself while out, in a restroom whose cleanliness you have no clue of even when it looks good, has got to be a bad idea.
According to The Academy of Nutrition and Dietetics and The European Society of Cardiology, in Forbes Magazine, 9 cups of water is appropriate for me. So,
3 Cups of coffee.
Cup of skim milk in outmeal.
Cup + of water in vegetable smoothy (yuk)
Cup of water in other fruits and vegetables
Cup of skim milk with dinner
Cup water in Swiss Chard Chicken Soup.
So I need to ensure I get an extra cup of water per day, according to these experts, overall. Their data does not consider, however, level of activity, climate and anything else other than 150 LBS. They also recommend looking at urine: lemonade yellow is good, dark yellow bordering on brown is not good. The more coffee I drink, the browner is my urine.
I don’t know if there’s a “hint” in all of this, but it gives an idea of one person’s experience. Urologist has “approved” my mgt. strategy for the time being. Merry Christmas everyone!
In answer to your question: yes, I am. Which explains why I have had a chronic infection. It’s quite scary feeling out of control of bodily functions but I will drink more water now as I’d really like to get better.
Thanks for this Professor. There’s a lot to remember with MS
Issue, and all of the urosepsis it cost for my loved one, are the reason why I wish more people would recommend feeding tubes earlier in the disease process. The combination of dysphasia, dehydration, and bladder retention in particular is bad.
I read this recently as I was considering the med. can you comment please The World Anti-Doping Agency (WADA) has recently added desmopressin, a synthetic analogue of the endogenous peptide hormone arginine vasopressin, to the Prohibited List, owing to the potential masking effects of this drug on hematic parameters useful to detect blood doping.
That is not because DDAVP is used for doping; it simply dilutes the red blood cell or haemoglobin concentration in the blood for a short period of time due to water retention. This allows athletes who are doping with EPO or recombinant erythropoietin to pass the screening test or threshold for doping.
Would you say Desmopressing spray over Oxybutinin. I’ve gone back to this as I had side effects on the other, newer meds. I have a long awaited Neuro appointment tomorrow and ought to address this.
As I was typing my first reply I received a photo of my newly born first Grandchild. So hopefully message made sense.
These two strategies are complimentary to each other. Anticholinergics relax the bladder and DDAVP reduces urine output for a period of time. So both agents may be necessary.
I would not use oxybutinin as it crosses the blood brain barrier. There are much better 2nd and 3rd generation anticholinergics with less CNS side effects.
Thank you. I was concerned as Alzheimer’s is prevalent in my family. I was told it was ok for travelling etc. I’ve been taking it when I go out shopping etc. I’ll get this addressed.
I took your survey on bladder problems and dehydration to my GP. I told her I know longer want Oxybut’ re dementia risk. She’s given me DDAVP. She not yet given to an adult. Her guidelines came up as a last resort. She says it works brilliantly in children and considers it a good choice. She did say I can’t have the Mirabeg’ as they’re both HBP risks so one or other. Mine is only 110/70 at age 62 not shabby at all. So I’ll see how it goes and take it when I go out.
Correction to my recent post. Replace Fingolimod for Mirabegron 25mg > 50mg. Deepest apologies. I must have been reading about the prior before I left the comment. Apologies again.
Such an important post!
I am more likely to sleep through the night if I drink right through until bedtime - concentrated urine is more irritating! Plus dehydration at night = increased spasms.
Unfortunately, pwMS often withhold liquids for nocturia that is actually caused by sleep apnea. Hormone changes due to low oxygen causing bladder to wake us up vs becoming hypoxic in sleep.
Dehydration PLUS oxygen deficit is a sure in to progression.
Low serum progesterone or estrogen can also cause nocturia in menopausal women.
***Every person with MS needs a sleep study.*. Any weight, any age, snoring or not.***
Thank you for this post!!!!
This is a maddening situation. It is compounded by the fact that I think I get urinary tract infections that are not picked up by ordinary testing. My doctor had been prescribing antibiotics as I said I needed them. And then I developed a reaction to sulfa drugs. So I just decided not to take antibiotics. I can see it in my walking. But my doctor is so upset by the constant antibiotic intake that I cannot take them when I know that he doesn’t think this is a way to go. so I’m not taking antibiotics and I’m not getting around as well as I can when I do take them.
There is this concept of L-forms of bacteria that cause infections, but can't be cultured in a lab.
Is this what the urologist called colonized bacteria?
Possibly. But they may have been referring to a biofilm or interstitial cystitis, where the bacteria, penetrate into the wall of the bladder. Both these problems are very hard to treat. This is why d-mannose, alkalisation of the urine and sodium hyaluronate (Cystistat) are used.
Thank you. I believe she’s referring to embedded bacteria, biofilm. I don’t know why we don’t use more instillation!
Some people with MS with recurrent infection benefit from taking daily urinary antiseptics. In our centre we cycle every 3-4 months between cefalexin, trimethoprim and nitrofurantoin. In the past we also included nalidixic acid, but the latter has been stopped because of off-target side effects in particular tendon ruptures.
I was cycling through antibiotics, my ID doc prescribed me grudgingly, but when I developed such a grave reaction to sulfa trimethoprim, he was seemed so distressed, I stopped and did not fill the prescription he had written. I’m now trying to combat the spasticity I think have the infections give me.
Thank you for this post! People often ask me why I drink so much liquid if I have frequency/urgency issues, and they don't understand that, due to recurrent UTIs, it is no joke if you don't drink anything during the day.
By the way, thank you so much for long and informative post about bladder issues (Infection: Managing your bladder to prevent recurrent UTIs) - it helped me to explain all my bladder issues to urologist (for example, I didn't know that hesitancy was MS related) and to discuss treatment options. Hope something will work out for me. Best regards!
Hi Belma, hesitancy is huge. My kids used to be outside the bathroom door saying “mama, mama, are you done yet?” while I hadn’t even started! It was worse in restaurants or being out where people were waiting. Wishing you the best!🌷
Thank you! One of my wishes, when we sell this appartment and buy a new one God willing, is to have 2 toilets,one only for me,so I could avoid those situations! Urologist gave my a medicine which is given to males for prostate issues,and it helped wth hesitancy a lot!
Hi Belma, I’m glad it’s working. The only one I tried was tamulosin (flowmax) and I was allergic to sulfa in it. :/ So I don’t know if it worked. Sounds good!🌷
Tamsulosin is the one 😁 it helps so far
It's an interesting observation. In my case, before I was diagnosed and until the last few years I was clearly dehydrating myself, but there was no strategy behind it. I would go all day without a drink and wonder why people carried water bottles with them. However, if you sat me at a table with a bottle of water on it I would guzzle the lot and then notice that I was thirsty. It was the same thing with smell. The house could be burning down and I wouldn't notice it. As I am better than I used to be both the need for water and my sense of smell is now appropriate. Maybe something subtly changes how we think of thirst and smell.
Thirst is a CNS phenomenon and is driven from the lamina terminalus in the hypothalamus. It is feasible that MS involvement of this area could affect thirst. You may want to read this online description on the control of thirst.
https://sitn.hms.harvard.edu/flash/2019/neuroscience-thirst-brain-tells-look-water/
I do dehydrate myself when I know finding toilets is going to an issue but one thing I that helped with the frequency is to drink smaller amounts more often.
Luckily I’ve only had one bladder infection which was really horrible and when tested at the b&b clinic it was found I wasn’t completely emptying my bladder. I coincidentally found what I think is one solution for that… while trying the wim hoff method is when having a really cold shower or preferably bath before going to the loo then I’m quite sure my bladder has shrunk an emptied then!
I’ve been living with MS for 43 years and it’s taken most of that time for me to have become a believer. Hydration is important for people with MS. But, a few other things - like medication and exercise - are needed to keep my bladder balanced.
I wrote about this a few weeks ago.
https://themswire.com/a-better-bladder-means-better-sleep/
Yea, a ray of light in the mist. You have to stay aware and sometimes it's difficult. Thanks, have a good one :-)
Have you actually spoken to a person with ms? My questions are- how on earth does one do pelvic floor exercises when your pelvic floor muscles don't work. Resist urinating- are you kidding? Exactly how you suggest doing this when again the muscles involved don't work? Anticholinergics- dry mouth, constipation, urine retention, dizziness, confusion. People with ms do what they do when they are faced with an impossible situation and few alternatives
Thank you for this, Prof G. This is certainly pertinent to me as of now and always has been. I’ve been dealing with a neurogenic bladder for 30+ years. Oxybutinin XL worked well for a long time. One thing I learned early on was to never, ever cut down on water/liquids, and if I felt I had a UTI brewing, drink, drink, drink as much water as possible. Often, that was enough in the old days to defeat it. Though my damaged bladder is awful at night, I am doing phenomenally better during the day with bitter cranberry and estrogen, I push plenty (a liter plus) of water, plus two mugs of herbal tea daily, and find I am fully emptying during the day. I use quicky kegels if need be. (Here’s a shout out for estrogen, which we with cancer histories were denied after they pulled the Swedish vaginal Estring!!) I have had only one tiny stone, which I passed after a urocystogram, but admit I am apprehensive about an upcoming cystoscopy to examine a urethral diverticulum which has thankfully not become a stricture. She will also inject Botox. Question: Has anyone had Botox? I have not had to catheterize much after estrogen and cranberry during the day, but I have assented to Botox, since nothing works at night, and realize I may have to catheterize more. I don’t understand why desmopressor is not available in the states. I also don’t understand why antibiotics aren’t rotated. Interesting re nalidixic acid (Negram). I took it for years in my 20s for mysterious occult blood, which begs the question how long I’ve had this disease. My kidney function so far is fine. Not needing to catheterize as much is a relief, because it significantly reduced UTIs. Great post!🌷
This is fascinating! I feel like a 2024 goal of mine will be looking into bladder exercise and control to see if I can't improve my bladder. I avoid drinks all day if I am out and about with my kids - constantly finding a bathroom with two young kids in tow is a nightmare so I just avoid liquids. Duh, clearly not the right tactic, but it's been my go to 'solution'!
I am left again, asking myself , what is important here? The only thing I see as important is UTI’s. The rest of the complications that have been mentioned can be monitored with routine blood work and urine tests, which here in the US, come along with healthcare. Other monitoring you can do yourself (depression, cog. functioning, physical performance). So yes, I don’t over-do it with the water. I note that when I drink even a half liter, it takes less than an hour to bring me to the toilet, sometimes 15 minutes. My bladder apparently does not fully empty (2-300 cc’s), there is frequency, urgency and nocturia. I have BPH with obstruction, controlled very well with Finasteride. Tamsulosin helps with the obstruction (I think that’s what it’s for.) I’ve had numerous kidney cysts for a long time (no PKD). Reports say detrusor and sphincter dysenergia, neurogenic bladder, mild hydronephrosis (1 kidney). My understanding is that if there is obstruction, extra liquid can stress the kidney (i.e. hydronephrosis) I am considering a “rotor rooter job” (TURP), as that helped my father (who didn’t have MS). Brings up the issue of not forgetting we MSr’s are subject to all the other ills of getting older and many things may not be due to MS.
It all sounds very scary. Is a bladder that never empties scary? As far as I am aware, as soon as it empties normally, it begins filling again. There is urine accumulating and present all the time, normally. Perhaps more water keeps the system less toxic; I’ll think about that one. I don’t like the idea of hydroephrosis because I have obstruction, so extra fluid does not motivate me.
So UTI (which I have yet to experience) is reported to increase with catherization. UTI’s are reported as one of the increased causes of death in PWMS. I don’t read anything about a partially filled bladder creating infection; you need bacteria. I would think that catherization is one way to invite bacteria, and the research, like I said, shows that because more people die when they catherize. Wearing a good diaper and knowing where the toilets are when out, is how I manage the problem. Certainly trying to catherize yourself while out, in a restroom whose cleanliness you have no clue of even when it looks good, has got to be a bad idea.
According to The Academy of Nutrition and Dietetics and The European Society of Cardiology, in Forbes Magazine, 9 cups of water is appropriate for me. So,
3 Cups of coffee.
Cup of skim milk in outmeal.
Cup + of water in vegetable smoothy (yuk)
Cup of water in other fruits and vegetables
Cup of skim milk with dinner
Cup water in Swiss Chard Chicken Soup.
So I need to ensure I get an extra cup of water per day, according to these experts, overall. Their data does not consider, however, level of activity, climate and anything else other than 150 LBS. They also recommend looking at urine: lemonade yellow is good, dark yellow bordering on brown is not good. The more coffee I drink, the browner is my urine.
I don’t know if there’s a “hint” in all of this, but it gives an idea of one person’s experience. Urologist has “approved” my mgt. strategy for the time being. Merry Christmas everyone!
Tom, and Merry Christmas to you! I’m amazed with everything you’ve got going on here you’ve evaded UTIs. That’s a very good thing! Cheers! 🌷
In answer to your question: yes, I am. Which explains why I have had a chronic infection. It’s quite scary feeling out of control of bodily functions but I will drink more water now as I’d really like to get better.
Thanks for this Professor. There’s a lot to remember with MS
Issue, and all of the urosepsis it cost for my loved one, are the reason why I wish more people would recommend feeding tubes earlier in the disease process. The combination of dysphasia, dehydration, and bladder retention in particular is bad.
I read this recently as I was considering the med. can you comment please The World Anti-Doping Agency (WADA) has recently added desmopressin, a synthetic analogue of the endogenous peptide hormone arginine vasopressin, to the Prohibited List, owing to the potential masking effects of this drug on hematic parameters useful to detect blood doping.
That is not because DDAVP is used for doping; it simply dilutes the red blood cell or haemoglobin concentration in the blood for a short period of time due to water retention. This allows athletes who are doping with EPO or recombinant erythropoietin to pass the screening test or threshold for doping.
Would you say Desmopressing spray over Oxybutinin. I’ve gone back to this as I had side effects on the other, newer meds. I have a long awaited Neuro appointment tomorrow and ought to address this.
As I was typing my first reply I received a photo of my newly born first Grandchild. So hopefully message made sense.
These two strategies are complimentary to each other. Anticholinergics relax the bladder and DDAVP reduces urine output for a period of time. So both agents may be necessary.
I would not use oxybutinin as it crosses the blood brain barrier. There are much better 2nd and 3rd generation anticholinergics with less CNS side effects.
Please see: https://gavingiovannoni.substack.com/p/your-anticholinergic-burden
Thank you. I was concerned as Alzheimer’s is prevalent in my family. I was told it was ok for travelling etc. I’ve been taking it when I go out shopping etc. I’ll get this addressed.
I took your survey on bladder problems and dehydration to my GP. I told her I know longer want Oxybut’ re dementia risk. She’s given me DDAVP. She not yet given to an adult. Her guidelines came up as a last resort. She says it works brilliantly in children and considers it a good choice. She did say I can’t have the Mirabeg’ as they’re both HBP risks so one or other. Mine is only 110/70 at age 62 not shabby at all. So I’ll see how it goes and take it when I go out.
Correction to my recent post. Replace Fingolimod for Mirabegron 25mg > 50mg. Deepest apologies. I must have been reading about the prior before I left the comment. Apologies again.