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Madison1943

Distinguished member
Joined
Oct 21, 2009
Messages
162
Reason
PALS
Diagnosis
05/2009
Country
US
State
Wisconsin
City
Madison
I'm at my wit's end about this stupid thing. I've had ALS for 2 yrs. and it started in one leg. Now it's worked up to my speech and my tongue is balky, but dribbling pee out every so often is not what I was expecting. I have to wear a big pillowy pad to avoid messes and that's irritating. It isn't a question of true incontinence. I have control of my bladder insofar as I feel pressure and can go in the bathroom. It's just this routine dripping that is driving me nuts.

Do any of you other women experience this? My neurologist is just no good. She recommended putting a bar of soap in between the sheets to cut down on leg cramps.

I've got an appt with a urologist in August. Any suggestions would be so gratefully accepted.

Carol
 
Hi - this happened with my mom who has ALS for a few months - her doctor related it to spasms of her bladder. She also wore a pad as needed and made very frequent trips to the bathroom. It was very upsetting to her. Her doctor started her on Detrol and that seemed to help a bit. She also kept waterproof pads on her bed which came in handy numerous times. Oddly enough - the problem stopped just as suddenly as it had started. She no longer needed the pads and discontinued the Detrol. Although a lot of what we had been told and a lot of what we read said bladder/bowel issues are generally not related to ALS - that information differed from what other ALS patients actually reported. I think we have learned to expect the unexpected in coping with this disease. My heart goes out to you - this forum has been invaluable to me during these very difficult months since my mom was diagnosed. I'm sure you will find a wealth of information and support here.

Betsy
 
Carol,

Mom has been taking Detrol for about 14 months now. She was diagnosed almost a year ago, so she's been on the medication the whole time and hasn't had any real problems with it. She says it has made a huge difference...for her anyway.

Chris
 
Ok, that's something I'll ask the urologist for--Detrol sounds like it would help. Also, I've noticed a decline in the problem in the last few days. I'm hoping it's unrelated to ALS too, but not positive, because I never had any problem before diagnosed.

Thanks for the info!

Carol
 
Carol; can you not get an analysis done of your pee? Maybe an infection? Quickly done here but not sure how it works over there?
 
You know, Irismarie, I was thinking the same thing. Also, are you certain your done when on the toilet? I know my mom has to sit for a few extra seconds to be sure she's finished. ?
 
Okay, now I dont have ALS, but I have the problem with the pee. I got very sick in a foreign country years ago, and ended up coughing my bladder down 90 degrees. Had the corrective surgery, but 6 months later, back to the same old problem. I have finally gotten to the point of wearing the overnight pads because they are wide on the front and wide in the back so I dont worry about it so much anymore. Now, I also take oxybutinin which is also something they prescribe for PALS. Its inexpensive, and it does dry the mouth if that is a problem with the saliva. It doesnt work all the way for me, but it helps. My bladder fell again, so thats why I still have to use the pads. It happens to a lot of people with ALS or not, not to worry, ya get used to it.
Hugs, Kari
 
Well, I thought about an infection but have no pain or burning. I think it's just weak muscles. And yes I never seem to finish peeing. It just dribbles all the time. I'll get a test for infection no doubt when I see the urologist.

Thanks for worrying with me!

Carol
 
you know, i just reread this and got worried cos there is a line break after "recommended putting a bar of soap in".... and what with the title and all.............

BUT THE "simple" act of peeing is nightmare for us women, isn't it! And Linda, yes, I have problems in starting and in finishing. Never ever feels completely normal in spite of v strong antibiotics.

Well, it is nice weather for dribbling, isnt it! Oh, dear, as if losing our legs and our voices and our breath were not enough!
Good luck, Carol. let us know what the urologist says..
 
Yeah, it's a nightmare for sure. Last night I had a fall while using my rollator. I was on my way to the bathroom, but peed all over everything lying on the floor. That sure saved time! I'm thinking of asking the urologist about suprapubic catheters. Don't know if they're worth the trouble, but something has to give. I can hardly go anyplace and it isn't because I don't have a powerchair and a nifty van. I took a potty chair along on a trip to see my grandchildren last week and it saved the day.

Thanks,
Carol
 
take a look at shewees. The portable urinal for women is brilliant and tucks in handbag
Home
 
Almost every single time I go to my PCP and do a UA I have an infection and dont even know it. One way to know if your bladder is shot to hell as well, is if when you pee and you try to stop peeing and you cant cut off the stream. I heard with the catheters you can get an infection with them really really easy. Now if you are feeling down, I will pull out my oh so funny story of when I had an accident in the middle of the day in the middle of Hyde Park in London!
Hugs!
Kari
 
Hey when m sister lived in Sumatra a lifetime ago, the "native" women taught her to use shutting off her pee by using her muscles as a way avoiding the title of that song currently doing the rounds on facebook and thus of keeping your husband;-
 
Oh yes, I had that mastered with my husband believe it or not! But, for some reason, when the bladder is shot ya cant stop the stream.
 
Well, yesterday I counted the number of times I peed in 24 hrs. It was 15 times and I wasn't even drinking a lot of water yesterday. Just staying home. I can't walk by myself and I've fallen using the rollator twice in the last week. How can I go to the bathroom 15 times in one day? The PWC is no help either. It's just in the way. Holy cow. Just had to vent.

Thanks,
Carol
 
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