not only am I always dizzy, but I am afraid to go on family outings because I may wet myself. Only my son knows that part of my MS. I have not even told my older sister that I tell just about everything to. I am a 38 year old. It is not easy to tell people I wet myself. They know about me having MS, but they will never know that part. I am always dizzy and fell weak. I want to be able to enjoy thing without all these issues. How can I do that?I take medicine for the incogness, but I still have accidents when out to long.
First of all I just want to say that I am sorry you are having to go through all of this. I have had urinary difficulties myself and they are absolutely no fun. This topic is hard to talk about and even with loved ones. What would it be like to tell your sister about this symptom? Although the topic might be uncomfortable, perhaps your family could be of assistance to you and especially for trips and outings.
Wanted to say too that you are definitely not alone with having this problem.
In researching your question I found a stat from a Julie Stachowiak, Ph.D who states that "Bladder dysfunction occurs in at least 80% of people with MS. Some estimate that up to 96% of people with MS who have had MS for more than 10 years will experience urinary problems at some point." So it seems that most of us who have MS will undoubtedly experience some urinary problems now or down the road.
From my own personal experience, I wanted to add, that sometimes it isn't the MS which is causing these problems. I was experiencing severe urinary urgency some months ago. The culprit ended up being a combo of having an ovarian cyst and fibroids. All the extra "stuff" was pressing on my bladder and giving me tremendous grief. So it is good to get checked out by your doctor and/or gyne to rule out any other reasons for urinary issues other than MS.
Sounds like you have been to your doctor and have gotten some meds to try.
I am not a doctor but merely a patient with MS too. So having said that, here is my best advice.
One thing I am sure you have already thought of is to limit caffeine and orange juice. They will cause you to have to go more.
And perhaps you will need to do a little planning ahead of time to plan your bathroom trips. I was having to do that myself for awhile, knowing where bathrooms are located, and setting times when I would go.
Here is also an article which gives specifics about how to actually train your bladder.
I do hope that any of this will be useful to you. And I also hope that folks from our community here will chime in and talk about their experiences and what has been helpful for them.
Thank you so much for your question and please do come back to read and share. If you have any more questions please let us know.
Hi S. Washington:
This is probably one of the most embarrassing symptoms with MS. I've had MS for over 30 years and know where every bathroom is, in every department store, supermarket, mall, and restaurant. I made it my business to know, because I hate getting wet!! Then I got the doc to order Detrol (the Detrol LA was too strong for me and dried my mouth out to the point of getting mouth ulcers, so the regular Detrol is fine for me.)
Besides using POISE pads (in the beginning), I started to hit the bathroom on a schedule - every hour and a half worked for me. Try working a schedule out knowing your own body.
I am now up to Pull Ups (Depends, off brands, generics, etc.) and I have to self cath about twice a month now because I don't empty out completely, which is a culprit for UTI's. Before I got to this point though, I realized I was hitting the bathroom and within 10 to 15 minutes I had to go again.
That was the first sign of not emptying out completely. I used so ergonomic tricks for over 10 years to stave off cathing, and you can too.
It may sound silly and look absolutely absurd, but who cares, it works. More with females than males, but it works.
1. Relieve yourself in sitting position, as usual.
2. Bend forward to a 45 degree angle and hold for 60-90 secs. See if any urine releases. This works for only about 10% of MSers.
3. Lean to your right side lifting up left buttock. Hold for 60 seconds and release any urine. This works for more than 50% of MSers.
4. Lean to your left side, lifting up right buttock. Hold for 60 seconds and release any urine. This works for most MSers.
Believe me, this works. You will be good for at least two hours because you are empty. Try not to drink tea, coffee, juices, alcholic drinks, or energy drinks. Stick to water, no more than 3 sixteen ounces per day. Your body will adjust to the new intake. Milk is ok with meals, but limit quantity.
To make this ergonomic theory hit home for you, the next time you are in bed lying on your side, lie there for about an hour. Then roll to the other side. You will notice within 15 minutes you will have to get up and hit the bathroom. Body positioning is key to the above step program for it to work.
Self-catherization is the last resort....you don't want to go there if you don't have to.
I hope you try this out and Let us know how you are doing.