How long before incontinence.
 

Hi everyone.
Two weeks ago I was diagnosed and I'm quite worried atm about it. I'm 35 and feeling ok right now and doing what I can to prepare, just living each day fully.
I guess what I am worried about now is from like a year or two from now will I be getting signs of incontinence.

I haven't discussed it fully with anyone for now, I'm trying to come around start too, but will everyone that gets diagnosed end up with incontinence?.... In most cases does it always require huge protective wear or in most cases can a catheter or small pads be enough?....
If you don't mind...how long did it take to realize your first signs of incontinence?.... Do some of us not have any troubles like that?....

I guess what I want to know is.... will I be in diapers within two years?
I'm not sure if that is something I can deal with.....

Sorry for the sudden post, but I just need to know.

thank you from my heart.

I have ZERO incontinence. None, zero zip. Well, every now and again I have a weird dream that I need to pee really bad, and in my dream always find a strange place to go, where I have to work at it, and then wake to realise I am going! :eek: run to potty...I know loads of MS and non MS folks that do that.

I have a friend that was dx 10 years ago that has a kidney issue and incontinence was an issue right out of the gate for her.


MS affects all patients differently. Some of us will have pee running down our leg, and others will be dry till the end.

Why do you worry about this? Is there a history? family history or just a personal fear? urinary retention "can" be an issue in MS, but the MS doctors, and centers are pretty big on screening, and getting to these issues before they become a problem. there are also a host of drugs on the market that help prevent this. Vesicare and the like.

What other question do you have?
Have you been to NMSS.org ? the national MS society has a great KIP program (knowledge is power) and they will send it to you free. Please go register.
What meds are you on? Have you started injections?
We are happy to answer just about any question you can think of.

Welcome aboard. Nice to meet you. :hug:

Don't fear what hasn't happened yet. It may never happen as Dej said.

:hug: and welcome to the boards.

That is great to see:winky:

I am just worried from what I have researched that incontinence was unavoidable. The only other one in my family that has MS is my mom's aunt and she is in a electric chair that is pretty neat lol. It's just that what I read on the internet, incontinence is part of it, but I really haven't talked in depth about any of this with anyone yet.

Thanks for the website link.

I won't!..lol:winky:

Hi Eric and welcome to NeuroTalk! Sandy and Dej are right.....don't worry about what hasn't happened. It may never happen. I've been diagnosed since 2005 and I don't have a problem with incontinence. I may later in life....and it might or might not be because of MS. Lots of different things cause it.

I'm glad you joined the group here. There are lots of really great folks in our MS community. Hope to see you around the forums! :)

Welcome to NeuroTalk, Eric. I'm glad you found us. I hope you decide to stay. :)

What Dej said is true. I have had MS for more years than you have lived :eek: and, although I have had accidents, I am not incontinent and do not wear diapers/depends.

So don't buy any yet, although keeping a stash is not a bad idea..:D

Again, Welcome..:hug:

Sally! I had no idea! You rebel! :cool::D

When I first got DXed for MS, I read and read on the Internet. Got terrified and waited for all to happen with my eyes closed. Most things never happened. Every MSer is so different. I have no tingling, no numbness yet I can't walk. I can feel the need to pee and nurse at urologist amazed as in her experience it was rare in MSers. Take it day by day I was DXed in 2002 but with hindsight see stuff in 1994 were the beginning.

I was dx three years ago and have not experienced a problem with incontinence. I do not know what you are reading, but Dej's suggestion is a good one.

Just on the site suggested it says 80% will experience incontinence with MS. The MRI suggest MS, but no idea if it will go ballastic or stay where I am now..I feel great right now.

Looks promising though from what I read of you here and it seems to not be a big issue actually. I feel happier right now:cool:

Thank you.

Some of us have the opposite problem. My "neurogenic bladder" just doesn't remember how to empty. I was told if I had the overactive problem, there would be treatment options, so you may want to check with your doctor. I agree with what others have said, and keep in mind no two forms of this disease are exactly the same.

!st of all, welcome to the forum. We have a great family here!

When I was 1st diagnosed I went to a MS association meeting. I saw a lot of things there that that scared the begeebees out of me. I didn't want to end up like 'those people'! I also did a lot of research. A person can almost imagine themselves having many of the symptoms with MS. You just have to give your body time to learn about itself and read but don't see yourself in everything. Be educated but not scared. I've been living with this stuff since 1997 and am planning on going to Disney World this fall and enjoying the heck out of myself and my grand kids!

I just seen this on a forum and it got me worried. It was a forum that had a post of someone peeing in the Wal-Mart parking lot. I have googled MS incontinence and got tons of results and facts with percentages of people having problems with it is around 80%.
Yet you all have no problems with it..I mean that you don't have incontinence.
Even the Mayo clinic says incontinence is one of the "common problems" Fatigue dizziness....things that I have felt.

It's just that the incontinence scares me the most, but the replies here form you all and the fact that many treatments are in effect if bladder stuff comes up, makes me feel better.
All in all.... pads and stuff like that seem rare to actually use..just if anything doesn't work....even then a cath sounds promising which will be what I do. I don't want to think about pads.
I've also met a 64 year old at the nursing home with MS....she told me to hang in there and visit her often(I will) She's in a chair and uses caths, but she seems able minded and funny as heck.

It's just been two weeks so nothing is affirmative yet.... I'm just going to try and not worry to much atm.... I also got a new radio control car to work on so I will concentrate with that right now(took time off from work)

Thanks you all. You all are so great and I wish you all the best as well.
I really mean that. I want to hug and get a hug, but this is the restriction of the internet.

Welcome EricP :hug:

Once you've been with us a bit longer, and read a lot more in the forums, you'll see that each and every one of us is that little bit dissimilar.

There are times when I feel like we all have a different disease, with just the name "MS" to connect us. Our symptoms can be so diverse.

I've had some incontinence and I've also had the direct opposite..... when I just could not pass my urine, but please know that I was diagnosed with MS over 30 years ago. I'm one of our older members .... well .... middle aged plus a bit :D... and my continence issues are only recent.

Please try to put this symptom out of your mind for now. 80% is a little far fetched... as I'm sure others here will tell you, and I'm sure there are many other things that you need to look into for now.

Have a read through this forum, and let us know if there's anything else we can help you with.

When I was first diagnosed I read everything I could find on MS. Most of it was on the Internet. And I probably talked myself into most of the symptoms I read about! It's just inevitable. But, in reality, I really only had a few of them. The more I read, the more I thought I would eventually end up with them all. And that's just not the case. I've learned that each of us, although we share a disease "name", each experience a totally different course. I've learned to take what I read with a grain of salt and realize that my MS is unique to me. It's taken a while but I've relaxed quite a bit and just take each day as it comes. Worrying about what tomorrow or even next week holds is just a waste of time and energy. :)

Hello Eric and welcome to NeuroTalk.

I have been diagnosed with MS for 24 years and I am not incontinent. There are a lot of different symptoms with this disease, some you will experience and some you won't.

Oh Eric. Reading stuff on the internet blindly can lead you to want to poke your eyes out! :eek: You will see miracle stories of folks that took ONE single diet, and were CURED! Then there are the sites that promote getting stung by bees! or the drink this juice, and leave your troubles behind folks! PLEASE read from reputable sources. NMSS.org is awesome, we are the folks living with this disease, and can tell you from personal experience what is or isnt working. Many of us have done extensive research.

In this group we have many very well educated folks. Some in the traditional sense, and some by the school of life. Most of us have tried this or that, or the other. Many of us have tried just about every drug out there for this MS monster, and what works great for one person, doesnt do much for another. This monster rarely affects two people in exactly the same way, even if you are identical twins! I have met twins with MS and one was in a chair, and the other was working full time in a hard job 12 hours a day, and running marathons. I have met twins that one twin has MS, and the other twin doesnt have MS!

Even if you do end up with bladder issues, there are TONS of ways to either deal with it, or medicate it, or be well hidden. This person peeing in the parking lot at Walmart sounds like they have other issues on top of MS. Walmart has FREE bathrooms to use, and they do an ok job at keeping them clean. Most every store out there has free bathrooms, and if you are having bladder trouble, you would learn where all of these spots are, and never let yourself get to the point of peeing in public.

Are they starting you on Meds? injections? pills? Have you done the MRI? the spinal tap? (many of us didnt have to get that)

Glad you stumbled in. Hope we can calm your fears.

I read about ON and kept waiting for it, figuring my neuro was the MS director of Johns Hopkins and the go to ON guy and would help me. Did I get it? NOOOOO. My ex PCP told her Intern I had MS and my legs wre numb. I said loudly "no they're aren't". Lot of misconceptions about MS by many out there. I have never peed in the Wal-mart parking lot but they are an evil employer you know. I go to Target instead but have never peed there either. My SIL sent me a bracelet that is engraved "One day at a time". Yes.

Peeing in Walmart parking lot? That would only happen if you held it so long you couldn't help it considering they have bathrooms. haha

Unless, they were waiting for someone in the parking lot. One time, and I don't have ms mind you, hubby does, I had to go so bad. He was visiting his dad at graveside. I had to use a can. Yep, it was the can or drench myself. What can I say? It even happens to us affiliated with ms. haha

In all seriousness, they have so many treatments for incontinence. Hubby use to wear an external cath and loved it. Well, didn't love it for real, but it kept him from having any accidents. Women don't have that option since our plumbing is different.

Stick around, you'll see that ms affects everyone in different ways. Hubby was diagnosed almost 22 years ago and is still loving life despite his ms. :hug:

Hmmmmmm......this didn't happen to be in Georgia, did it? :D

The 80% probably means anyone, with MS, who may have had an incident/accident. Heck, that could be 80% of all people..:D

Old neighborhood neighbors loved making Big (heavy) Joyce laugh so hard pee ran down her leg. 2 kids, age, laughter, weight - she had no MS but they could and did. A neat but strange neighborhood. I wasn't yet DXed, but nobody did that to me since I didn't respond.

Okay, so I'm one of the few here who does suffer from incontinence..but I had four kids...their weights were-9lb. 1 1/2oz.; 10 lbs 4 1/2oz.; 10 lbs. 5oz.; and the girl 9 lb. 12oz.
And my mom and sis both suffered from incontinence. It can be inherited, I know.
I'm on meds to stop the urge incontinence. It has lessened; the stress incontinence is worse, but it's because of surgery that made it that way, not MS.

I also agree-we can be an informed patient, but just be wary of the self-fulfilling prophecy syndrome. If you keep thinking it will happen to you, then it just might.
MS has many symptoms, and many people experience different things.
Try to concentrate on what you CAN do, not on what you can't...
And tune in here often...lots of great info, lots of laughs, some tears and a whole bunch of hugs!!:hug:

The twins together were 10 lbs, 6 ounces. I call them my 10 pound baby. My friend (who did not have MS) after birthing 4 kids says her bladder fell out and she pushed it back in. Can bladders do that? I heard of happening with cows.

yes, they can....it's called a "prolapsed bladder".

It can happen to uterus's (uteruses? uteri?) too.

It usually takes surgery to put them back tho.

It happened to Jim's granny. She had dementia too and although it wasn't funny, it was. She came out with her legs spread wide saying "Looooooorrrrrddddddyyyyyy what in the world is this?"

She was fine once they hung it back up. :eek::D:p

Two babies here. One 8.3lbs. 19.5 inches long, the other 10.10lbs. 24 inches long. If I so much as sneeze or laugh too hard I better have those legs crossed!

Eric, aren't you glad you asked now? :p

Hee hee Sandy...:pI just had surgery for a prolapsed bladder...which made the incontinence worse. Only 10% of patients who undergo this surgery have increased incontinence...lucky me:mad:
It's a girl thing...don't worry, Eric:p

LOL!! I wish some of the guys would chime in on this thread! :D Leave it to us girls to keep a thread about peeing going for three plus pages!! :cool: :D

I even saw on Nmss.org under symptoms that 80% will have continence issues..

Quote..Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully. Treatment strategies for bladder management include dietary and fluid management, medications, and intermittent or continual catheterization (inserting a thin tube into the bladder to remove urine). end quote

I have learned that treatment are taken if it occurs though and by going with the stories here it is very much managed with not having accidents or using what I fear most is external garments. I have more to go over with my specialist(meeting another specialist on Thursday and I will bring up continence. Maybe I can do things right now that may help prevent it?
I do not drink soda now as I learned it aggravates the bladder.

I've had my MRI and it is suggestive of MS, meeting another specialist on Thursday. I'm still processing, but all the responses about my biggest fear about it on here is very promising and I feel a whole lot better...much better. I bet it won't happen to me and I feel I can do this...more than I did a few days ago.

Thank you:winky:

It's ok lol... I've been reading stuff about peeing ones self, caths and accidents for three days now..so this does not phase me lol:winky:

What the story was is that she was pushing a cart out to her car, a pack of DR.Pepper fell off the cart and sprayed all over. She then said she started to pee and could not stop. Apparently didn't feel it coming and not just avoiding the Wal-Mart bathrooms.
I have read a lot in forums of people mastering where all the bathrooms are "just in case" Also Mobility continence.. not being able to walk fast enough to get into the bathroom.
Another person cracked a joke about someone asking him how he manages the bathroom....his reply... "it depends" :rolleyes:

Also when Richard Pryor was on an episode of Chicago Hope it showed him in his share un-able to stop the flow. He had MS and apparently died of a heart attack not related to the MS.
Things like that make me think it's going to happen and unavoidable.

It's just that I don't know where mine will go right now..maybe it will stop, but I am trying not to read into it...I can't help it though... I just don't know what else to do in order to not worry.

I feel great so far...I don't feel like I have anything...I really don't.

Word of advice...stop researching MS on the internet. It will drive you absolutely insane.

I know I couldnt help reading and researching and it drove me nuts. I had to force myself to stop researching because all it did was scare the crap (and possibly other bodily fluids) out of me.


If you're not having potty problems at the moment, do what I did. Go to a urologist and have them do a full workup on you so that you have a baseline of what your "normal" is. They can tell you if there's anything wonky going on down there, and if there is, they can help you with that.

My regular doctor suggested doing that after the neuro diagnosed me. My regular doctor's dad has MS. So, I'm guessing my doctor has a bit more experience with multiple sclerosis than some doctors do. (he's the only general practice doctor that I've met that knew more than the medical dictionary definition)

So, I had to suffer the indignity of people poking around in areas that I didnt want to be poked around in, but at least I came out of that knowing that at the time, things were relatively normal. (they still are, aside from the occasional UTI, but I dont think those UTI's have anything to do with the MS, but I wont go into that)

Bladder dysfunction doesnt always equal incontinence. Bladder dysfunction can mean frequent urinary tract infections, or inability to completely empty your bladder, all the way up to and including complete incontinence. Shame on the NMSS for not breaking that down better.

We dont do well with fevers, or heat. When we start feeling poorly, one of the first things the MD has you do is check your temp. If its even a tiny bit high, the first thing they do is dip a urine sample. I personally have had several UTIs but those are easily fixed. So...I guess that does put me in the 80%, but I dont dribble, I have never had an accident. I dont need pads, or catheters, and my UTIs are infrequent at best.

Most of us take meds that "regulate" or "calm" the immune system, and that makes us prone to pick up bacteria or viral issues more easily. I had 2 UTIs in my whole life till MS. I have had a few since, but they are quickly picked up, and easily treated.

Please keep in mind like Debbie D, many women have incontinence or stress incontinence issues after having even smaller sized babies (Debbie scares me! 10 pounds! :eek:) and some leak when they sneeze, laugh or blow their nose. I had a 6 pounder when I was 21, and have not experienced this.

Also there are exercises that help streghten the pelvic floor muscles which support the bladder. Keeping this muscle strong will help prevent and correct some issues with leaking, and is supposed to help improve sex lives of men and women.

Kegel for women...

http://www.childbirth.org/articles/kegel.html

Kegal for men...

http://www.askmen.com/dating/love_ti..._love_tip.html

As usual, Dej, you are so good at expanding on a subject with information and advice that helps!! Thanks! Oh, and when my size 2 DIL heard how large DH and I, as well as our babies, were at birth, she freaked!!

Eric, sounds as if the WalMart incident is urge incontinence. It's a more neurologic issue than stress incontinence. I suffer from urge inc. when I hear the washing machine run, when I run the faucet, etc. Sometimes I just can't keep it from leaking out, and when it's this type, it's a lot.
That's why it is important for me to pay attention to going to the bathroom even if I don't feel as if my bladder is full--often I can't tell whether I have to go or not...I think that this IS part of the MS:(:(.

I'm not taking any meds even after two weeks ago when my MRI was suggestive of some problems. Maybe this is good as it's not to that point?... or maybe after Thursday it will be different.

The specialist I am seeing Thursday is suppose to be awesome according to others I have talked too, including my 64 year old friend Shirley who has had MS for over 30 years. She says he is the best. I can't wait until Thursday.

Eric, just stick with us. We'll be there to answer questions as well as make you laugh until you pee. LOL

I just read this from another forum I found in a google search..

A girl 26 and she had MS since 2008 and this is what she wrote in that forum.

In 2008, I was diagnosed with Multiple Sclerosis, and something like that can TOTALLY turn your world up side down. You have no idea how to relate to anyone anymore... I don't know about your specific disease, but mine makes me freak out like crazy about my "biological clock" and having kids, because the nature of my disease is progressive and unpredictable. I could end up in a wheelchair any time - the way mine is progressing, it's likely I'll be paralized by the time I'm about 40. Knowing that, it makes me want to push really hard to get married ASAP, because I want to have kids NOW, when I'm young, and more able to bounce back from the attacks that this disease wreaks on me. The older you get, the harder it is to recover from the attacks, and most women get these attacks after they give birth, so I want to have my kids when I'm young, so if I have the attack, I'll recuperate faster, and be able to get back to being a Mom.... being a Mom means EVERYTHING to me. I know women aren't supposed to say that. I know we're supposed to be liberated feminists who don't care if we ever get married, who don't care if we never get to have kids... but I do. And I want to run around with my kids and play with them, and not be an embarrasment when I show up for school functions, and give them EVERYTHING. How can I do that - be an awesome supermom, which a hard enough job as it is - if I'm doing it from a wheelchair? Is it even RIGHT for me to have kids if I know that I have this medical condition?

And what sucks is, depending on the treatment for your disease, it can be really scary for a new potential dating partner to deal with. Explaining that I have to inject myself with interferons, that - despite the fact that I'm NOT 72 - I have to use a walker because my balance sucks sometimes, (SO not sexy on a 26 year old), that every once in a while, I experience a stroke, and have to re-learn how to walk, write, talk, etc., well... it scares men off. I mean, guys my age have trouble accepting any kind of "baggage" you know? And you don't want to lie about it, because you don't want to be ashamed of it, because, like it or not, the disease is a part of your life, and you feel like if you're ashamed of something that's such a huge part of your life, you're really just ashamed of yourself - and you're not. But you can't exactly start off with all of this information on the first date, because then, all he'll see is the disease, and not YOU. So is omitting this information "lying"? It's so hard to know how open to be about it!

Walkers?..... I have had fatigue and somewhat balance issues... I would feel like my head got detached from my body and is why suspicion came to us.
She says she'll be paralyzed by 40.....is that possible?... is that the worst case of it?.... This is the worst I have seen so far. She said mini strokes as well.

I just can't wait till Thursday, I am going so damn insane right now that I'm getting to wear I don't feel like doing anything...I'm just watching TV and playing with my RC cars/helicopters atm.

I just wish Thursday would come already.

OK Eric, breath. That is not always typical. Yes there are varying stages of ms and yes some do use walkers and wheelchairs and some have a harder time than others. BUT, there are those who function just fine and go about their business as usual.

If doctors are still doing things the way it was with Jim, they will monitor you for five years to see how your ms affects you. Then they can try to say what stage or level of ms you are at. My hubby is secondary progressive, he started at relapsing remitting. He does use a wheelchair and cannot walk. Stay with me here. He was able to walk and transfer until he went through kidney failure 7 years ago due to a nursing mistake.

Now, just because he uses a chair doesn't mean you will. MS is such an unpredictable disease and no one can tell you where or how it will affect you. Those stories only serve to scare the crap out of one so take it with a grain of salt. Strokes? Never heard of strokes and ms so can't comment on that. Maybe she has a pre-existing condition?

Also, these stages are just that, rules doctors live by to grasp what level you are at. There are many people who have Jim's level of ms and still walk and work and do very well. So just because one person experiences something bad does not mean you will. I promise you that. Your ms will be different than anyone else's. You will have similarities but unlikely the same path.

Are you still breathing? :hug:

There is no roadmap with MS. I'm 54, 2 kids, a husband. I have PPMS, considered th worse by most - I'm in a chair but retain cognitive function, accidents sometimes but no incontinence, can still feel down there (girl parts), never blindness or pain. I can still stand to self-toilet but sure can't walk. Everyone is so different. Yes, I absolutely hate this but it could be worse I guess. My kids seem fine and healthy. physically and mentally/emotionally, As and Bs, Honor classes. It could be worse. I was given no choices in any of this.