MS bladder health

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I'm a 27 year old man with MS and also have bladder control problems. I hear that this comes with the territory but haven't talked to anyone in the same boat. So seeing if anyone here is

 

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Benfrank,

Although I do not have MS, I do have another genetic disease, which is largely responsible for my urinary incontinence. Good luck finding another MS patient who understands incontinence from your perspective.

 

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What is your genetic disease? Have you been able to get treatment for the incontinence?

 

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I have Marfan's Syndrome. The genes which code for fibrillin, a structural protein found just about everywhere in the body, in my case code for a defective form of the molecule. Fibrillin is a huge molecule, with several thousand atoms, that can be defective in hundreds of ways. Relevant to this topic, it has weakened the discs, ligaments and vertebrae in my lower spine, pinching and irritating the nerves which manage continence. It also gives me sciatica periodically. I have a very mild form of the disease; the worst cases of it can kill folks before their twentieth birthday.

 

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Benfrank,

I neglected to add that I have participated in several genetic studies, which included numerous MRIs, and have had six bladder surgical procedures. I have also had several months of pelvic floor physical therapy.

 

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From my reading on MS, about 90% of people with it are incontinent to varying degrees. It comes with the disease caused by your immune system attacking your central nervous system. Then there is a lack of sensation and your bladder just empties, which is what mine does, and I am completely unable to stop it.

 

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Hi Joey,
Thanks for reaching out! Yeah I think it comes with the MS territory. Which sucks but I think it's more managable than most MS symptoms

 

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How late in life can the onset of m.s. be?

 

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MS is usually a prime of life disease. It's usually diagnosed in someone's twentys but can be diagnosed at any time. Often times someone can have MS for many years and it hasn't affected enough or critical parts of the brain to become noticeable. My doctors think I've had it since I was 12. The only symptom until I was 27 was incontinence. Then when I was 27 it hit the fan and I got diagnosed with it.

 

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My Aunt has MS. One of the big things she found helped was to keep busy. Her symptoms got worse when she retired, so she went to do legal work for a non-profit and improved considerably. She is also the only family member that I have discussed incontinence with aside from wife.

 

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My mother had MS and passed many years ago but she was incontinent for most of her adult life and I remember the drs saying there is no help for her but recent advances have ways to help. For a male you should talk to your Dr. there are surgical options to avoid diapers or catheters. My problem occurred from an accident I was in and has been progressively getting worse. MS is a horrible disease and my heart goes out to you!! I hope you find the answers to your questions!!

 

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Hi all. New in this Group. Call me esther.ppms 30 yrs, now 71.
I am still mobile but neurogenic bladder been an early and terrible problem. Not horrible. Horrible is too strong word for this! Ben Frank I have kid your age approx!!!! We should talk. Your smile wonderful,btw

 

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@Esther718

Welcome to the group, Esther718. We all have our 'terrible' problems which we somehow solve or manage. It's what we gotta do. I think you'll get on just fine in this group.

 

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Thank you Esther, yeah I would love to talk!

 

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Hey Benfrank, we connected a few weeks back. I am 36 diagnosed with MS in Dec 2016 after being hospitalized for a week, prior to being hospitalized puked my guts out for the month of November then my walking became worse and worse. Basically couldn’t walk properly until halfway through last year. My incontinence started around the time my walking corrected. Lol oh the joys. Followed up with my ms clinic and they just said that comes with ms. I have to say my incontinence symptoms seem to be better on the drug Myrbetriq. Feel free to message me anytime Re anything ms or incontinence.

 

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Thank you! I tried that drug but it created retention which is a lot more dangerous than Incontinence. Is vomiting associated with MS? I’ve never had that. My Incontinence and walking difficulty happened at the same time. It was when I had my first real exacerbation. My walking has gotten better but the Incontinence still seems out of control. My doctors don’t seem concerned about it. But, I tell them that I can manage it and it really doesn’t bother me all that much.

 

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Agreed retention would be way worse just fortunately for me it seems to help my symptoms. I agree with you I don’t find the incontinence symptoms that big of a problem for me either. I am doing urodynamic testing later this year. Vomiting was caused from a lesion in my brain . I am just happy that has halted.