Emabarrasing Event; is this common with MS, or something else.

[Fluffysmom]

I've been having issues with my bladder; urgency, frequency, small leakage, feeling of irritation, some bladder cramping.  I posted a while back about my wonderful new urogynecologist.

Welllllllllll, I woke up this morning at 2, having to go potty.  I swung my legs over the edge of the bed and started to get up, and the urine started flowing.  I hurried to the bathroom, but I couldn't stop the flow no matter how hard I tried to Kegel.  I even urinated on the toilet seat.

Luckily, I was wearing a pad for my period, or it could have been more of a mess than it was.  I put brand new sheets on my bed last night!  Didn't get any on them, thank heavens.  I had to change my undies, wash up, put the pad in a plastic bag, clean the toilet seat, etc.

So, is this something that people with MS have experienced?  I suppose it could be "normal with aging", but is 46 really that old?  And to go from a dribble now and then to a full flow?  Yikes!

I figured the best way to let go of the embarrassment is to share it with my forum family.  

Should I call my urogynecologist, or just wait until my next appointment?  Will advance notice help her decide what testing to do at my next appointment?  Should I buy thicker pads?  

Thanks for any input.

Kathy

[wishforchange]

I've talked about this publically before so can't claim embarrasment now!  Fact is I have all the above symptoms, and after a life threatening incident a couple of years back where I turned up at the hospital with a belly ache and was found to have well over a litre of urine retatined, have been catheterizing ever since, worsening and worsening as time goes on.  Incontinence, leakeage, all the above, yep, yet NOBODY has ever suggested to me this could be a MS thing, or even a CNS thing.  I think they look at these symptoms differently here, with Professor Fowler paving a way towards an explanation that doesn't autamatically imply MS or even CNS damage.  Whether she's right or wrong, I don't know.  Her explanation is that the brain sends the message to the sphincter to contract when it should relax.  What I don't get is how she classes it as of non neurological origin.

I'm lucky.  Most people with my problem here get told its anxiety or age or the usual excuses.  It's only on autopsy that the extent of the damage is found.  I just happened on finding a nurse who had worked with the professor, so got me seen properly.  

Sometimes I wonder, if I was living in the US would I be being investigated for MS with my symptoms, having more comprehensive tests, be taken more seriously?  We are very, very behind in this country.  Sorry to just take off into my own world here but it gets to me quite a lot now.  I stumbled on this forum by accident almost, and stayed not just becuase of the fantastic support but because of the similarity in the symptoms of so many here to mine.  I still don't think it's MS, reason being my joints were the first affected and my reflexes are reduced or absent, rather than clonus eg., so I never gave CNS problems a thought.  But the speed of this deterioration over the last year is dramatic, and gaining momentum.  And it seems that once the usual suspects of either rheumatism or even lupus, should they not be found, are dismissed, so will I.  After all I'm over 40 and don't exercise any more, doctors probably think I've had a sedentry lifestyle and am just grumbling now.  I should take my exercise instructor certificates to them.

Sorry, never 'hijacked' a thread before.  Just had a day at work, walking and walking and stairs and walking and I was practically crying in pain and then took so many pills I fell asleep in front of everybody.  I could barely get myself home.  I found myself staring wonderingly at the wheelchairs.  Got chatting to a mental health nurse, and she did her thing, comforted me, realized how exhausted I am.  I can't WALK anymore.  Long corridors are like marathon races....okay enough, sorry Kathy, no respect for your thread.  Won't go off on one again.  

I need my dam neurologist back!  He needs to get over himself and do as he promised.  I can't do this alone.  I am not a doctor, I can't order tests.  Hell I can't even suggest them without rubbing them up the wrong way.  I've lived with this body all my life.  I am medically trained, I know what needs to be looked at.  I just haven't the diplomacy to get it.  Off again.  Only three hours sleep last night - need an excuse to be naughty here.

wish, I wasn't such a miserable old....finish sentence with your own noun.

[Lulu54]

Shell points out the this post isn't very long and I think that is because this is one area so few of us want to talk about publicly.  Even when my MS neuro asked me about incontinence during our first appointment and I knew how important it was, I just couldn't get it out of my mouth  and I glossed it over.

Yes, I have had tons of bladder problems, including the spontaneous release of my bladder (4 times this year, thankfully all at home), urgency, hesitancy, frequency - just about everything except UTI's.  I too know where the nearest restroom is at all times, just in case.....

Until they started looking at MS for me, I attributed it to my age (53) and figured I would live with it like my mother does. Now I know differently, and have a urogynecologist appointment for next week.  This is such an important topic to talk about publicly so we become desensitized to the empbarassing nature of it ... thanks Kathy for bringing this up.

Be well,
Lulu

[Fluffysmom]

Hello, thanks for the this fine explanation of why our bodies do this.  I found a website that explained the different types of neurogenic bladder disfunction, but it was very technical and with my current state of brain fuzziness, it wasn't easy to follow, except that MS looked like the most likely of those for my symptoms.

I have urgency, frequency, stop and start urine flow, bladder/urethra feeling of irritation, leakage, and now one incident of incontinence.  I feel like I have to go, and then only pass an ounce or so of urine, other times passing more than a pint when I just mildly feel like I have to go.  I feel like I don't empty my bladder; not because a feeling of fullness, but because I can go again in a few minutes.

I would guess there are other reasons for some of the symptoms, or we wouldn't have all those "gotta go" commercials.

I tried either Detrol or Ditropan several years ago when what I was dealing with was called simply interstitial cystitis. I had a reaction to it, but I couldn't remember what it was, so my urogynecologist gave me some samples of a similar drug to try.

First, I'm trying inserting Premarin cream twice a week for three weeks.  Apparently this has been shown to help women with perimenopausal symptoms such as dryness that are adding to the irritation.  I've used it for two weeks now, and my symptoms are not better.  As a matter of fact, it was after my last dose that I woke up and couldn't control my bladder.

I did call and leave a message for my urogynecologist about this latest event, as what leakage I had before was just small dribbles I'd see in my pantyliner, not having felt it happen.

My MS specialist said that if a urologist could say that my bladder symptoms were neurogenic, it would point more towards me having something like MS,  then made sure to tell me that it wouldn't MEAN I have MS, it would just make it more likely... and kind of trailed off.

Tomorrow I give my MS specialist the name of the urogynecologist that I'm seeing in place of the urologist she referred me to.  Quix recommended her, I could get in sooner, and she will do testing sooner. As a bonus, she's great!   The urologist only sees female patients one day a week; small wonder I would have had to wait months for testing after waiting a couple month to get in for a new patient appointment.

So, thanks again and wish me well tomorrow.  I had nine hours of sleep last night and am feeling the fatigue and other symptoms that caused me to call to get squeezed into her schedule, even if thet are slightly lessened.  Maybe this incontinence episode will set off a lightbulb over her head.  I have a 30 minute appointment .

Hugs,

Kathy

[sllowe]

Hi Kathy,

I'm surprised this thread is not longer as where MS is concerned this seems to be the most common problem.  There are so many things that have to happen properly in order for our bladder and our bowels to work properly.

There are a lot mentioned here, frequency, urgency, incontinence, leakage, etc. From what I understand, the problem we experience is related to the area of damage.

Your bladder gets stimulated when it is full (as it expands) and from there is where the problems lie because the signals have to travel (properly) through your spinal cord and then onto our brain.  From there it has to continue to send commands.  I'm sure you can see where I'm going with this since we have CNS damage.

The brain then should send a message to release.  Think of it all like reflexes that should go on smoothly, but they don't because of  number of factors.  

For example, our brain could receive an impaired message from the onse, or the brain is not aware that the bladder is full, or those reflexes are hyperactive (not just where the bladder is concerned, this has to do w/the sphincter too -- gosh I hate that word). So, you see why we just lose it, or can't go when we think we have to, etc, etc.

It stinks, literally sometimes.  But, it's one of the 1st questions these Drs ask about and it's for a reason.  It's a big and common issue.  Some meds are said to help w/specific problems.  Like I mentioned above, depending on the damage and subsequent symptom (i.e. leaking) just need to narrow down which one, so they can provide something to help these reflexes work together.  Like Detrol may be prescribed for urgency or frequency.

Do explain to these Drs best you can what you have going on  so you can find some relief.  I've not taken anything myself yet.  But would be good to find what is working for some of our members.  

ttys,
Shell

[Fluffysmom]

I called; her medical assistant wasn't in, so I won't get a response until tomorrow.
Kathy

[Fluffysmom]

I hear you!  I know that your life is pretty stressful at this point, and I appreciate you taking the time to send me some important information.

I'll look at the Fowler's website again.  I know that a disease or syndrome or disorder doesn't have set rules as to who experiences which of the symptoms.  Learning about MS has taught me this well.

The only reason I want to hear that my symptoms are neurological is so that the neurologist will keep looking.  She needed some hard evidence that something going wrong with me is neurological, as my neuro exam only shows slight issues, especially since I've only seen neurologists when my symptoms aren't acting up.  I hope my appt. Wed. will change that.  My arms are weak; holding my arms in position to type is difficult.  Actually, its not really easy to hold my body upright.

Enough of that, I won't whine anymore.  Good to hear from you!  If you need someone to listen, you can PM me.  I read and responded somewhat to your journal entries; my brain has been a little fuzzy, so I'm not real sharp.

I wish I could make up my mind about calling my uro-gynecologist about this morning.  What can it hurt, right?  I'll do it.

Kathy

[wishforchange]

My Ug told me this is more likely to happen with menstruation, influence of progesterone apparently.  The good news is it doesn't happen at other times, if you have what I'm thinking.  Useful as you're more likely to be wearing a pad anyway!  Seems like not a lot can be done.
The website I directed you to doesn't describe Fowlers very well but you sound very much like it could be the problem.  Maybe something to bring up with your ug as a possibility?
Things get complicated when there is also ms like symptoms and as in my case spinal lesions, but the syndrome can occur independantly of any other neurologocial problem.  Really is a hotbed of research at the moment but suddenly all these people, not just women, who suffered for years in silence and eventually died of kidney failure (not all of them, don't worry!) because of chronic retention are starting to be identified.  Wish I could offer you better information but I only have what I've been told.
To cut a long story short, this may or may not be an ms symptom, it can occur without other neurological problems.  I know that doesn't make you feel much better but at least it isn't a definite for ms!  
I'm not convinced my bladder problems are entirely unrelated to my lesions, the neurosurgeon may have the last word on that, but it is possible.  These are top scientists and doctors around the world looking into this, not some whacky theory, worth giving it some serious thought.  Just can't find good stuff online.  Some of my symptoms don't 'fit' the disorder, but that may be because they are still learning about it, or that the diagnosis is wrong.  But I'm sticking to my guns a little with you Kathy, you and your ug need to give this some serious consideration.
Apologies if I sound blunt, am stressed, very very......very
Wish

[Fluffysmom]

Oooh, I'll pay attention if I get stomach cramps or any other hints like that...

I usually know where the nearest bathroom is because of the urgency and frequency that I've experienced for quite a while.  I'll be even more careful now.

thanks for the warning; I never know what's going to happen next!

Hugs,

Kathy

[Wobbly]

I hate to mention that I only dealt with the constipation problems for few years and still do, but added to it...the runs...if it's not constipation...I have the runs...and better have a bathroom around when this happens...Not fun

take care
wobbly
undx

[Fluffysmom]

Thanks, I think I will call my doctor's office.

My best friend's mom prefers Poise pads, they must be the most comfortable and absorbant.  I'll start looking for coupons!  :o)

sigh, may we all get a diagnosis soon!

be good to yourself,

Kathy

[Fluffysmom]

Thanks, I feel better knowing I'm not alone here.  

This is the first time this has happened.  I did have a couple accidents before where I didn't wake up, just dreamt I was up and in the bathroom.  I attributed that to the strong muscle relaxants I was taking at the time.  I don't take those any more.

I wondered if my bowels would be next, but I have such an issue with constipation that it seems unlikely at this point.  

Yes, thank heavens that this happened at home, for both of us!  I remember my mom coming home having wet her pants in her car, or as she was trying to open the door to her apartment.  This was when she was around 70, and had lots of health isssues.  I always wondered why she didn't wear Depends or something, since the pads she wore didn't do the job.

I can't imagine that they are comfortable though, so I hope it doesn't come to that.  Oh well, I've been adapting to so many changes, what's one more?  I don't think we're handed more than we can handle.  

Hugs to you, too!

Kathy

[Wobbly]

I join this club...it's not fun and can be very embarrassing... I use pad alot know..I don't get my period .. I use Poise ones...and my bowels can act up to.

as you know I'm not yet Dx and this can be from age for me...I'm 55 now... I will be telling the Dr... you guys should too...

take care
wobbly
undx

[doni54]

Hi, I'm not dx, but I have done this same thing a few times.  Like you, I do have to hurry when I feel the urge, and sometimes I'll not make it quite in time.

But when it just lets go and you can't stop it, it is not fun!!!!  This has only happened to me 4 or 5 times in the last year and luckily I was at home......thank goodness!!!

I have started have the same problem with my bowels....and if you want to talk embarrassing................ewwwww.............thank goodness I was at home then too.

I would tell my dr about this, though.  You should always keep them up to date on what is going on with you.

Good luck and hope this doesn't happen to you again!!!!

Hugs
doni