I went to see rehab Dr armed with your article suggesting Mirabegron for urinary frequency and was prescribed it and the difference it’s made is so good. I never get up at night and I rarely have an accident. I don’t need to go for a pee every hour, like I used to. Why my neurologist didn’t suggest it, is beyond me!
I also asked her to put me on Sativex and again it’s been transforming- I’m off Baclofen and no longer get leg spasms. Without your articles I would be none the wiser - so please keep them coming.
I, too, use medical cannabis in a 1:1 ratio (same as Sativex but in powdered form) or in a 5:1 ratio — and find that it works faster and more reliably than baclofen. When the tingling of the CBD starts, I feel my legs stop aching, and mentally visualize the inflammation dissipating from my legs as the medicine makes its way through my body. Then I forget I have legs and I can sleep. (The pain just stops.) Logically, I know that’s not how it works, but the feelings and the mind work together so well with this drug…I feel fortunate it is effective as not everyone can ‘feel’ it work.
I have never heard of this medication except through you, though it is available in the states as a generic. (I noted some really tiny trials here for MS.) I have tried everything, and finally had the cystoscopy done with Botox. I got a look at what chronic infections do to the bladder. The thing looks like the dark side of the moon. Compared to five, six years ago, as I smoulder away, it is no longer smooth. It is destroyed. What appeared on cystogram to be a diverticulum is a group of “bubbly” looking failures in the wall. Kudos to this urologist for admitting she had no idea what to do and had no idea if they are leaking. (MRI tomorrow.) Kidney function is still great, however. (Always look on the bright side of life!) I would like to hear from some Botox people. Having chronic retention, I think I will need more catheterizing, which the cranberry and estrogen had solved. (Sad face.) That, for me definitely means more UTIs. This is always an excellent subject. Even if I do the right thing and try to manage well, I feel as though this disease comes down to the luck of the draw! Happy new year to all, and thank you as always Prof G!🌷
My neurologist nor her team of nurse practitioners/physician assistants have never even mentioned this medication. However this article and those linked within it have been very helpful. I wish I had seen this information years ago! I plan to present it to my neurologist and make the recommended lifestyle changes to hopefully get this particular issue under control.
You cite your own experience (I guess in the clinic) as reference, but I’d like to know what statistical studies have been done between UTIs, and over and under hydration, hesitancy and failing to empty. Which of these predict a UTI? Not theoretically, but actually. Not acquiring UTI is one of my primary objectives in the bladder battle.
I plan to speak with my urologist about DDAVP (Desmotabs and Desmospray) upon my next visit when we talk about TURP. I believe there is a chance that the percentages of responses in your survey are a bit inflated, because the survey seeks those with a bladder issue.
Interesting topic as it involves many things involving the intersection of life & MS, that many of us would like to have better control and less worry about.
So grateful for all your educational materials!! The issue is my doctors. Tgey just don’t seem to get it, or ask. Get the wait and see approach. Trust me, I do try to self advocate but most of the time I’m dismissed.
I am in control of my water consumption and I need to do better!
Desmotabs enable me to get a good night's sleep. Yup I do need to drink a lot of water after I get up in the morning but that is, a small price to pay I'm 69 and cannot walk unaided but Desmotabs do not seem to be having an adverse affect on my life. I receive Botox injections into my bladder so no need to take them during the day
No mention of Crede manoeuvre to empty bladder? My bladder was my very first symptom. I couldn't empty my bladder so instinctively used pressure to do so. I've done it for 30 years. I have yearly scans, take D mannose and refuse catheters because they cause UTIs. My neurologist is happy for me to continue with Crede manoeuvre.
My neuro urologist is aware it can cause problems, so keeps an eye on it. But 30 years of self catheterization would have resulted in far more urine infections for me, so, on balance, I'll continue. I do have vacuoles as a result of crede. Why did your neurologist tell you to stop? Did crede cause the damage or MS?
J, it is no joke about the UTI incidence and cathing, although I managed to avoid it at all costs for years. The MS and constant infection have caused the damage, according to both neuro and uro. Not crede. Please, if you can, tell me more regarding “vacuoles”. On cystogram, it showed as a large pouch (diverticulum) what I saw simply looked like “bubbling”. Is this what you mean? And why the he*l don’t they know?
Have been doing Crede for +20 years, (as needed or wanted basis). Uro. said it was OK. No catherization or UTI here either. As with everything MS, fingers always crossed. Good luck!
Never heard of this med! I got recurrent Utis for 2 years after being catheterised and catheter bag put above bladder with fracture hip. Utis stopped with vaginal oestrogen. I had very slowly got good bladder capacity and much less nocturia by drinking small water more frequently (tho dehydrating when going out). Unfortunately i had to be catheterised again recently with hip dislocation they couldn't put back for a while. Symptoms v bad agsin now ! Incontinent in evenings - msybe cos tired and slow to toilet.
Hi, as you suggest more cover of bladder symptoms would be useful. I did use Desmospray occasionally but I had a fit the day after my last spray and was concerned that it may have upset my electrolytes (my wife is convinced!). I also found that my frequency or polyuria was considerably worse in the days after using Desmospray. Medical colleagues warned about not dehydrating after using the spray but that is a challenge if you get polyuria in the days after use.
I wish more doctors would recommend bidets to help prevent UTIs. Bidet attachments are relatively inexpensive. Knock on wood, I haven't had a UTI since we installed one.
do you think Fampyra has any effect on it, whatsoever? I take it only once a day, in the morning. Last months were riddled by bouts of dizziness so I quit baclofen and reduced Fampyra.
in the morning I have to go to bathroom every 40-50 minutes - and the sensation of urgency, of course. these "symptoms" don't appear after noon, so I associated them with the effect of fampidrine.
I had never heard of DDA by Nero or Gynecologist. I had been using Myberg for 1+ year but recently stopped as my primary DR had determined maybe cause of sudden unexplained and severe back pain. Will be talking to Nero about this alternative. In the meantime the acupuncture treatments are helping. It was recently recommended I consider Botox … not sure this would create other problems
I have never heard of DDAVP (Desmotabs and Desmospray) but I do not restrict my liquids due to urinary frequency. I do restrict my liquids because I’ve been diagnosed with hyponatremia which I just read is a contraindication to Desmospray. I thought the results of your study were really interesting. I am wondering if hyponatremia is common with people with MS.
Interesting survey results. I would never compromise my hydration, but I swap from drinking tea to water if I am know I shall be busy travelling or working to manage my bladder. I drink around 2 litres a day and everything seems to work well with the 'down theres'.
I had frequency during the day and Nocturia resulting in poor sleep. Had Fingolimod suggested by CNS at RLH. Saw GP. UTI excluded. Rx Fingolimod 25mg MR initially increased to 50mg MR. Resolved for several years. Nocturia returned fairly recently. UTI excluded. Sleep pattern established. Rx Amitriptyline 10mg early evening initially increased to 20mg early evening. All seemingly resolved.
I went to see rehab Dr armed with your article suggesting Mirabegron for urinary frequency and was prescribed it and the difference it’s made is so good. I never get up at night and I rarely have an accident. I don’t need to go for a pee every hour, like I used to. Why my neurologist didn’t suggest it, is beyond me!
I also asked her to put me on Sativex and again it’s been transforming- I’m off Baclofen and no longer get leg spasms. Without your articles I would be none the wiser - so please keep them coming.
I, too, use medical cannabis in a 1:1 ratio (same as Sativex but in powdered form) or in a 5:1 ratio — and find that it works faster and more reliably than baclofen. When the tingling of the CBD starts, I feel my legs stop aching, and mentally visualize the inflammation dissipating from my legs as the medicine makes its way through my body. Then I forget I have legs and I can sleep. (The pain just stops.) Logically, I know that’s not how it works, but the feelings and the mind work together so well with this drug…I feel fortunate it is effective as not everyone can ‘feel’ it work.
I have never heard of this medication except through you, though it is available in the states as a generic. (I noted some really tiny trials here for MS.) I have tried everything, and finally had the cystoscopy done with Botox. I got a look at what chronic infections do to the bladder. The thing looks like the dark side of the moon. Compared to five, six years ago, as I smoulder away, it is no longer smooth. It is destroyed. What appeared on cystogram to be a diverticulum is a group of “bubbly” looking failures in the wall. Kudos to this urologist for admitting she had no idea what to do and had no idea if they are leaking. (MRI tomorrow.) Kidney function is still great, however. (Always look on the bright side of life!) I would like to hear from some Botox people. Having chronic retention, I think I will need more catheterizing, which the cranberry and estrogen had solved. (Sad face.) That, for me definitely means more UTIs. This is always an excellent subject. Even if I do the right thing and try to manage well, I feel as though this disease comes down to the luck of the draw! Happy new year to all, and thank you as always Prof G!🌷
My neurologist nor her team of nurse practitioners/physician assistants have never even mentioned this medication. However this article and those linked within it have been very helpful. I wish I had seen this information years ago! I plan to present it to my neurologist and make the recommended lifestyle changes to hopefully get this particular issue under control.
You cite your own experience (I guess in the clinic) as reference, but I’d like to know what statistical studies have been done between UTIs, and over and under hydration, hesitancy and failing to empty. Which of these predict a UTI? Not theoretically, but actually. Not acquiring UTI is one of my primary objectives in the bladder battle.
I plan to speak with my urologist about DDAVP (Desmotabs and Desmospray) upon my next visit when we talk about TURP. I believe there is a chance that the percentages of responses in your survey are a bit inflated, because the survey seeks those with a bladder issue.
Interesting topic as it involves many things involving the intersection of life & MS, that many of us would like to have better control and less worry about.
So grateful for all your educational materials!! The issue is my doctors. Tgey just don’t seem to get it, or ask. Get the wait and see approach. Trust me, I do try to self advocate but most of the time I’m dismissed.
I am in control of my water consumption and I need to do better!
My goal in 2024😊 and to reread your info.
Happy 2024!
Desmotabs enable me to get a good night's sleep. Yup I do need to drink a lot of water after I get up in the morning but that is, a small price to pay I'm 69 and cannot walk unaided but Desmotabs do not seem to be having an adverse affect on my life. I receive Botox injections into my bladder so no need to take them during the day
Patrick, do you have a problem voiding from Botox? All I know is 100 mg were injected.
No mention of Crede manoeuvre to empty bladder? My bladder was my very first symptom. I couldn't empty my bladder so instinctively used pressure to do so. I've done it for 30 years. I have yearly scans, take D mannose and refuse catheters because they cause UTIs. My neurologist is happy for me to continue with Crede manoeuvre.
Hello J Gould, I used Crede for years. Now that bladder is in a bad state, I have been counseling not to use it. But it definitely worked well!🌷
My neuro urologist is aware it can cause problems, so keeps an eye on it. But 30 years of self catheterization would have resulted in far more urine infections for me, so, on balance, I'll continue. I do have vacuoles as a result of crede. Why did your neurologist tell you to stop? Did crede cause the damage or MS?
J, it is no joke about the UTI incidence and cathing, although I managed to avoid it at all costs for years. The MS and constant infection have caused the damage, according to both neuro and uro. Not crede. Please, if you can, tell me more regarding “vacuoles”. On cystogram, it showed as a large pouch (diverticulum) what I saw simply looked like “bubbling”. Is this what you mean? And why the he*l don’t they know?
Yes, that is exactly what it is. Some uros say vacuoles, others diverticuli.
Aha! On CT, it appears as a large pouch. Thank you very much!
Have been doing Crede for +20 years, (as needed or wanted basis). Uro. said it was OK. No catherization or UTI here either. As with everything MS, fingers always crossed. Good luck!
Go Tom!
Never heard of this med! I got recurrent Utis for 2 years after being catheterised and catheter bag put above bladder with fracture hip. Utis stopped with vaginal oestrogen. I had very slowly got good bladder capacity and much less nocturia by drinking small water more frequently (tho dehydrating when going out). Unfortunately i had to be catheterised again recently with hip dislocation they couldn't put back for a while. Symptoms v bad agsin now ! Incontinent in evenings - msybe cos tired and slow to toilet.
Hi, as you suggest more cover of bladder symptoms would be useful. I did use Desmospray occasionally but I had a fit the day after my last spray and was concerned that it may have upset my electrolytes (my wife is convinced!). I also found that my frequency or polyuria was considerably worse in the days after using Desmospray. Medical colleagues warned about not dehydrating after using the spray but that is a challenge if you get polyuria in the days after use.
I wish more doctors would recommend bidets to help prevent UTIs. Bidet attachments are relatively inexpensive. Knock on wood, I haven't had a UTI since we installed one.
do you think Fampyra has any effect on it, whatsoever? I take it only once a day, in the morning. Last months were riddled by bouts of dizziness so I quit baclofen and reduced Fampyra.
Not sure what you mean. Does fampridine have an impact on bladder function?
in the morning I have to go to bathroom every 40-50 minutes - and the sensation of urgency, of course. these "symptoms" don't appear after noon, so I associated them with the effect of fampidrine.
I had never heard of DDA by Nero or Gynecologist. I had been using Myberg for 1+ year but recently stopped as my primary DR had determined maybe cause of sudden unexplained and severe back pain. Will be talking to Nero about this alternative. In the meantime the acupuncture treatments are helping. It was recently recommended I consider Botox … not sure this would create other problems
I have never heard of DDAVP (Desmotabs and Desmospray) but I do not restrict my liquids due to urinary frequency. I do restrict my liquids because I’ve been diagnosed with hyponatremia which I just read is a contraindication to Desmospray. I thought the results of your study were really interesting. I am wondering if hyponatremia is common with people with MS.
Finally after a year got a referral to continence team
Warned re dehydration and caffeine, no mention of DDAVP
Retraining of bladder discussed.
Interesting survey results. I would never compromise my hydration, but I swap from drinking tea to water if I am know I shall be busy travelling or working to manage my bladder. I drink around 2 litres a day and everything seems to work well with the 'down theres'.
I had frequency during the day and Nocturia resulting in poor sleep. Had Fingolimod suggested by CNS at RLH. Saw GP. UTI excluded. Rx Fingolimod 25mg MR initially increased to 50mg MR. Resolved for several years. Nocturia returned fairly recently. UTI excluded. Sleep pattern established. Rx Amitriptyline 10mg early evening initially increased to 20mg early evening. All seemingly resolved.
Change Fingolimod to Mirabegron 25-50. Apologies, had just been reading about Fingolimod but should have been Mirabegron.