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147426 tn?1317265632

The Waterways, From A to Z

I think some voyages are predestined; that is, nature immerses us so thoroughly in an experience that we emerge from the torrent drenched with knowledge and soaked with dismay or or delight.  Such is happening to me.  For the last 3 months my whole world swirls around water - water in, water out, water on the floor, water in the laundry.  I can't escape it, but can only hope to float to safety, buoyed by a good attitude and the hope of a doctor that she can stem the tide.  My goal is to circumnavigate the world of the bladder and learn what is known about the problems it can cause and be able to share that with my fellow cruise-goers.

Four months ago it was like a slow flash flood, my world of trickles and worries became one of pain and gully-washers.  I had had small amounts of incontinence since just before my diagnosis in 2007.  Now and then, I would have small, annoying leaks, but not enough to change my course or wash me out to sea.  I saw the Uro-Gynecologist and she offered the two streams of treatment, drugs for the overactive bladder or Incontinence Physical Therapy.  At first I declined both.  I didn't want any more drugs and just wasn't in the mood to get intimate with a therapist to self train.

This worked for two years.  But, last spring, '09, the problem was increasing.  My options were the same.  I opted for Physical Therapy which was a revelation.  It was helpful and empowering.  I wrote about my journey in a series of Health Pages.  About one half of people with MS and Overactive Bladder will be helped by Physical Therapy.  There is a neurological problem, but there are also techniques to enhance our ability to overcome it.  I found the experience to be empowering and self-affirming.  "I"  myself, was able to fight back against the torrent of problems causing me to be tossed around like a wreck against the rocks.  I now see that Incontinence PT is likely to help only those with a milder problem.

The most common - and treatable - problem for people with MS is the Overactive Bladder.  Now, this seems like a piddly little diagnosis and I didn't want to be one of those women on TV with OAB.  The symptoms vary from frequent, strong urges and the fear of leaking to frequent, strong painful spasms with the guarantee of some leaking.  What I began suffering from this spring was painful spasms followed by the dam spillway losing everything.  No amount of the techniques I learned in PT could close the breach.  No matter how much protection I wore, nore how I tried to pre-empt the process by timing my visits to the BR, I lost it all every time.  I now keep the mop and cleaner in my room at all times, own gads of pairs of underwear and have a more intimate relationship with my washer.  I never eave the house without my overnight bag packed with two changes of clothes and innumerable pads.

My URO-G is sympathetic.  She seems to understand how far I have drifted out into a sea of despair and loss of self control and self-esteem.  We redid the Urodynamic studies and in a sick joke, undoutedly organized by Poseidon himself, it was normal.  NORMAL!!!!?  Such is MS, she says.  So, I rejected more work from PT.  I do not believe that any further trials at self strengthening will allay this problem.  So, she gave me samples of Enablex and Sanctura.  Two of the newest and priciest meds to quell the floods.

Enablex might have well have been sugar pills.  No effect on pain, cramps, floods, or need to swab the deck.  The Sanctura was little better.  I did notice the cramps were "slightly" better.  At least they didn't bring tears to my eyes, thereby adding to the overall deluge.  I also found that the flood was delayed 3 to 5 seconds, rather than appearing immediately upon the first urges.  Neither of them had any of the well-known side effects of drowsiness, dry mouth, constipation known to happen with this category of meds.

Another feature began about this time.  They had taught me to self-catheterize.  This was easy, but demonstrated that mostly I did not have retention - the most serious urinary consequence of MS and the autonomic nerves controlling urination.  I also began to have a deep aching in my .... undercarriage...mostly in the bow, but extending to the stern also.  Higher up there was a constant aching.  I had three back-to-back urinary infections.  The waters became cloudy and polluted.  It was a month before that was taken care of, but the pain of the infections continued.  Now, I always hurt - ache - and I take nothing for granted - like feeling okay.  It feels like I always need to release the floodgates, but often nothing is there.

My next voyage out was with Vesicare and this did more to dull the waves of angry pain and seemed to delay the "puddling" somewhat more.  So she prescribed Vesicare - only to be told by my insurance that I must fail trials of Detrol LA and Oxybutinin ER first.  Okay, now we are 6 weeks into the drug trials.  Detrol LA - hmm... Big mistake.  As if overtaken by a sneaker wave I was bowled over and tossed back and forth with the ill feeling that must have been side effects.  Headache, chest pressure, wooziness - never before have I been seasick.  No life is worth living feeling that way.  But, yet, no decrease in pain nor in the now predictable floods.  No hope of a friendly port.  I wondered if there was any active ingredient in it at all. A third drug failed.

Oxybutinin ER was next.  By this time I had lost my navigational charts, my navigator had bailed (or been washed overboard - I lost track of the casualities, except for one hapless mouse found behind my recliner).  Sugar pill?  Not even.  Nothing was changed.  I doubled it without a thought.  Did I even take it?  No dry mouth, no drowsiness, and most of all no reduction in the now-epic floodings.  Fourth drug a real loser.

That leaves Vesicare, but I truly doubt this will be any life saver, nor even a child-sized water safety vest or WaterWings, though the wings would be a hoot to wear to formal dinners.  I, at least, could be safe knowing that when the flood gates opened, I would be saved as all the others washed helplessly by me.  :))

She had a long talk with me two weeks ago about Botox.  Seems more and more MSers are opting for that youthful bladder look.  This procedure is essentially a cystoscopy.  It's like an upsidedown periscope where they can peer into the bladder and do stuff like instill meds or clean off the barnacles.  They inject the bladder wall with 20 little torpedos of Botox.   The goal is to cause partial paralysis of the detrusor muscle of the bladder wall, alleviate the cramping, and the incontinence, but still allow functioning.  If they overdo it the bladder become temporarily paralyzed and one must self-cath until enough has worn off to function again.  This procedure needs to be done about every 6 months.  

So, that is what I know.  I will learn more and continue to fill in the facts of the different aspects of flood control.  I will also learn about retention and soon you all will be awash with the knowledge of what is out there to help.

Quix
44 Responses
572651 tn?1530999357
I'm just sorry the Federal government doesn't recognize that you live in a flood zone and offer you flood insurance.

Since you're paying for a whole vial of botox you might have them inject other places with the leftovers to go with that youthful bladder look!  LOL

Lu
987762 tn?1331027953
COMMUNITY LEADER
I dont know if i should laugh along with you or grab the rubber dingy, its not been a fun ride for your time of the great flood, you threw down the anchor some time back and it saddens me that nothing so far has stopped or slowed it to a manageable level.

Surely somethings got to work, botox makes sense but i dont understand the process enough i know but i wish the answers were easier to find. I suppose if botox works and it gives you relief from the floods it would be worth exploring further, though i still wish the issue was easier for you.

Thanks for the update though still wish the news was better!

Cheers........JJ
1253197 tn?1331209110
Amid the ocean, when the option is sink or swim, there lies a very brave woman who writes beautifully with humour, and lucidity sharing her pain, frustration and trials and the tribulations of being on the tidal waves. She deserves to hear how much we all appreciate everything that she does to help others and by sharing her experiences she continues to reach out to us all. I know that I will be joined by others and wonder how many accolades we can come up with....

"The most courageous swimmer in the wildest water"

Love, hugs and sunshine to keep drying the washing.

Sarah x
Avatar universal
The urodynamic study was normal?  Wow.

Did you "feel" normal during the study?
198419 tn?1360242356
You wrote this journey beautifully - though know the pain it brings you daily.

I'll pray botox is your missing mitigating factor -that they don't overdue  - and you soon sail at low tide.

(((hugs)))
shell

1312898 tn?1314568133
I am hoping for a resolution for this for you Quix.  You write so eloquently about your journey---you convey your trials with a bit of irony and humor.  I really do wish that you would write a book..

hugs

lois
739070 tn?1338603402
Ditto what Sarah and the others said. Beautifully written but I'm sorry you are having to endure this pain and it's sidekick, Flooding, to show us your fantastic writing skills.

Here's hoping the Botox will return your bladder to a "more youthful state".

Ren
338416 tn?1420045702
I just hope that this symptom isn't a permanent factor in your life!  This has to be one of the most inconvenient things I've ever heard of.  And painful too!

Perhaps you should be wearing a sailor cap in your avatar pic!  Or at least holding a life preserver.
147426 tn?1317265632
Yeah, the salad tongs just don't convey the problem.  My Uro-G did say that I would likely be wearing pads the rest of my life.  She didn't seem to think that, since it has progressively worsened over the last 2 years, it would improve on its own.  :((

Wind_and_Water - I was supine during the urodynamic study.  All I felt was the progressive filling of my bladder, no spasms felt or recorded.  I don't have the problem when I am reclining.  It's only when I'm more vertical, so the study did not replicate the conditions of the problem.  I didn't realize that during it.  And, yes, I have considered that somehow this is a psychological problem.

Quix
338416 tn?1420045702
Well, I'm sorry to hear that - this will make drinking liquids of any kind less attractive.  

Most of my problems are due to a weak bladder - any sort of shock, like a cough, sneeze, or high-impact exercise, and I'm leaking.  When I'm horizontal, there's a lot less pressure.  I wonder how you would have done if you were upright during the study.
147426 tn?1317265632
Yours is exactly the kind of problem that PT is more designed for, Stress Incontinence.  I can't remember whether you have gone through that or not.  Are you going to attend the online chat on Incontinence and Staying out of a Nursing Home?  The thrust of that talk will not be toward those of use with a strong neurologic damage, but toward the run-of-the-mill person with Incontinence, tho I am going to try to submit a question about us/me/floods/Botox.

It's not that your bladder is weak, it is weakness of the pelvic floor and sometimes of the urethral sphincter.

For severe stress incontinence they sometimes inject around the urethra with collagen to tighten it up along with efforts to strengthen the pelvic floor.

I wish I had been sitting up.  

Quix
338416 tn?1420045702
I've never had any PT for stress incontinence.  I probably should.  I think you're right - there's weakness in that area, front and back.  I've also had cramping, sometimes mild, sometimes rather severe.

I'm definitely going to check out that online chat - I'm very interested in what they have to say.  (One of the reasons I quit running - aside from the whole tripping and falling part - was that I kept leaking!)
147426 tn?1317265632
I just realized that, in all the fun and hyperbole, it sounds like I flood the premises all the time.  Not so.  I always lose most of my bladderfull, but have learned to contain it well with protection.  The epic floodings are probably less than once a day.  It's the ones in public that are so awful.  So, I want everyone to know that my exaggeration is for the amusement of it all - not a painting of real life.

Jen - What?  Tripping and falling wasn't enough to discourage the running?

Quix
Avatar universal
Thanks Quix, for your sharing of this painful issue.  I have been experiencing cramping of my bladder as I empty and afterward.  Is this normal?  It sounds like your cramping comes before emptying (or causes the emptying!)  I can never figure out what's normal and what's not...
1318483 tn?1318347182

You sure do have a way with words, Quix!  Though it is a very upsetting kind of problem that I would not wish on anyone, especially you.

The problems that you are having have always been a fear in the back of my mind.  I have been having a few minor problems with incontinence within the last year and worry about it getting worse.

I was lucky on that the Oxy-whatever med they give for this seems to be working pretty good for me.  I sure wish something would work for you!

I was planning on going to the online chat today but I don't think I am going to have time.  Will you take notes for me?  ;0)

Here's hoping you get some answers and help with this soon...

Addi
Avatar universal
On what grounds would you possibly think this is a psychological problem?  I would definitely keep investigating physical causes and solutions.

Have you considered this... ?
http://en.wikipedia.org/wiki/Percutaneous_tibial_nerve_stimulation

PS:  I was surprised to hear your urodynamic test results were normal, because mine were normal, too.  I was tested just a week ago.
Avatar universal
I agree---don't think this possibly could be psychological. I do understand that after enough symptoms and plenty of investigation, we start to doubt ourselves bigtime, especially if tests come out normal.

Anyone who would sabotage herself in this way, no matter how unconsciously, would also exhibit other very severe symptoms of emotional disturbance. I have known Quix for nearly 3 years through this forum, read thousands of her posts, exchanged lots of messages with her, and generally have gotten to know her psyche. I feel confident in saying that none of her symptoms is remotely psychological.

So Quix-girl, I hope you aren't really considering that as a possibility. Not even just in passing. And not even as a joke. I'm sending you big hugs and wishes that Botox, or something else, begins to work for you, and the sooner the better.

ess
Avatar universal
"Anyone who would sabotage herself in this way, no matter how unconsciously, would also exhibit other very severe symptoms of emotional disturbance."

Uh... no.  Not true.
Avatar universal
I disagree. The extent to which her life is affected by this condition cannot be exaggerated. It would take an extremely disturbed individual to destroy her own quality of life in that way. Such persons do not create this kind of crisis in an isolated manner. There always would be other indications. Perhaps not as obvious, but nonetheless detectable.

I have no interest in haggling over manifestations of psychological disorders on an MS forum, so I will leave my comments at that.

ess
147426 tn?1317265632
It's only that I have read about women who became "dependent on wearing the pads."  I try to note when the bladder is nearing full and I try to send the message to "hold it in" but nothing moves.  I am losing more and more sensation in my undercarriage as the months pass.  In fact, if nothing has leaked and I "kegel" it will often cause spurting, oddly enough.

I didn't really mean that I was causing this, only wondering if I had become lazy when nothing else was working.

The other thing I have tried is sitting on the edge of a soft chair and mechanically holding the flood back and doing something to completely take my mind off the painful urge.  Then when I realize there is NO urge at all - because we all know that an urge can subside for a few minutes only to reappear later with greater strength.  Then when there is no feeling that I need to go, I stand up and totally lose it all.  It's like the sphincter has already given up and not retightened.

I wasn't referring to acting like a Munchhausen.  But my mind has review every possible scenario I can dredge up looking for a solution.

I just attended the Incontinence Chat and his answer was that neuromodulation might be effect in rerouting damaged nerve pathways.  Since I stopped Physical Therapy just before that part, I think I will request another referral for PT and explore that option before Botox.

Quix
147426 tn?1317265632
Steph - I have also had the cramping with urination and the sharper cramp/pain afterward.  For me those are much like the pain that accompanies a UTI.  But, I didn't have one.  So, I know what you mean.

I would look toward the bladder irritants like caffeine, alcohol, spicy foods, artificial sweetners (most specifically aspartame) and carbonated beverages.  Dr. Crawford specificallly listed these in the chat today.

Quix
147426 tn?1317265632
Addi - I am currently on Oxybutinin ER at twice the recommended dose.  Minor improvement.

I should lose weight.

WAW - Yes, Dr. Crawford mentioned Percutaneous Tibial Nerve Stimulation and EnterStim both of which I will ecplore with my Uro-G.  I didn't understand that these have been tested in MS and have often worked.  This is what I meant by learning everything and becoming a guru in it.   Sounds like you know a lot about the subject also.  We should collaborate.

Steph - thanks for your vote of confidence.  :))   <- that's me smilling and making a double chin.

Quix
Avatar universal
I am glad for the opportunity to discuss this on an MS forum.  It is very relevant.

(1)  Is it possible for an MS patient to experience incontinence with a psychological basis?

Yes.  It is common for psychological factors to contribute to incontinence -- alone or in combination with a physiological cause.

It is a harmful to tell MS patients that psychological factors are only relevant to people who "exhibit other very severe symptoms of emotional disturbance."

Indeed, the vast, overwhelming majority of people who suffer incontinence with a psychological contributing factor are NOT "extremely disturbed individuals."

It is worrisome that some MS patients might exclude consideration of psychological factors due to such an erroneous caricature.

==================
(2)  Are MS patients scared by the very *suggestion* of psychological contributing factors for incontinence?

Yes.  Yet it would benefit MS patients to become more aware of, and more accepting of, the mind-body connection.

Each and every human being experiences symptoms of real physical problems that are made worse by our emotions, our attitudes, our expectations, and so on.  To ignore these factors is tantamount to ignoring ourselves.

On the other hand, it is completely understandable why some MS patients fall into the trap of ignoring the mind-body connection.

After all, many doctors dismiss people with MS as "it's all in their head."  These doctors go to the extreme, ignoring the "body" part of the mind-body connection.  And they cause utmost distress to MS patients, as a result.  The MS patient is placed into a position where she must fight -- and fight darn hard -- to make doctors look seriously at her body.  "it is NOT in my head, it is in my BODY."  Therefore, MS patients are vulnerable to traveling in the opposite extreme, ignoring the "mind" part of the mind-body connection.

==================
Quix, I think you are really smart to "have considered that somehow this is a psychological problem."  The quality of life usually depends upon the holistic approach.

Even if you were able to draw a Map of an existing spinal lesion, with dotted lines drawn straight to your bladder, nicely illustrated and suitable for framing -- I still think you're smart to consider the "mind" half of the equation WHILE you continue to explore physical solutions.

(And I know how fond you are of Lesion Maps.)

I'm very interested if you explored the option I mentioned, above, regarding the posterior tibial nerve stimulation (PTNS) or neuromodulation?

I'm still undiagnosed, myself.  But I am trying to keep in mind all possible treatment options for my progressively worse symptoms, in preparation for the day when I learn the name of my dastardly disease.
Avatar universal
Just saw your response, regarding neuromodulation.  Our posts crossed paths.  Did you feel them bump each other, due to post ataxia?
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