Houston we have a problem: dehydration
Why are so few of you using DDAVP (Desmotabs and Desmospray) to help control urinary frequency and nocturia?
Just before Christmas, I did an MS-Selfie Newsletter on dehydration as a strategy to manage bladder dysfunction and asked you to complete a survey (see Dehydration and bladder function, 21-Dec-2023). After 73 responses, the following are the headline results.
1. Most of you know about using dehydration to control bladder symptoms.
2. It is remarkable how many of you report bladder symptoms. It is worth pointing out that bladder involvement is a poor prognostic sign and indicates spinal cord or long tract involvement. This result is clearly worrying.
Over 4 in 5 of you are using dehydration to control your bladder symptoms. This figure is as shocking as it is surprising. I covered the downsides of chronic dehydration in the ‘Dehydration and bladder function (21-Dec-2023)’ newsletter. Please read it and upskill yourself on the relevant information, and if you have not completed the survey, please do so as well. Thanks.
It looks like the treatment of bladder dysfunction in pwMS is quite variable and needs to be standardised. I will need to look into the latter in more detail. One of the things I am working on is an MS-Selfie self-assessment and self-management application or guide to help you manage your bladder problems. Clearly, this needs to be one of my priorities for 2024.
It is not surprising, given my own experience, that so many of you suffer from urinary tract infections (UTIs). This is a problem in that recurrent infections are associated with a worse MS outcome, reduced quality of life and, in some instances, are the cause of death in pwMS. A lot needs to be done to improve things around preventing UTIs and other infections in pwMS.
I am interested in knowing what you think of these preliminary results. The most surprising result is that none of you report using DDAVP (Desmotabs or Desmospray) to help with bladder dysfunction. In my experience, DDAVP is a remarkable innovation to improve urinary frequency and nocturia. DDAVP can transform your life if used intelligently
I have been amiss in not giving you enough feedback on the results of the MS-Selfie surveys you completed. I promise to improve MS-Selfie in this domain in 2024. Whilst I am thinking of how to improve MS-Selfie in 2024, I would appreciate any feedback on the content covered in 2023 and would appreciate suggestions for MS-Selfie for 2024.
Happy New Year!
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
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.
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.