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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
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147426 tn?1317265632
Thank you for this study.  In all honesty I was not completely supine, but probably at about 30 degrees.  So, I was reclining, but not completely supine.  Still, I have been wondering about talking to her about my positioning and asking if we should redo it.

She is not at all hung up on the testing.  She totally believes me and is treating me as if I had a horrendously positive test result.  So, pragmatically, it does not matter.  It's the whole validation and "medical record history" of the thing.

But, thanks for this.  I am going to get the article and print it out.

Quix
Helpful - 0
Avatar universal
====================================
Quix, you said, "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."
====================================
According to the medical literature, posture does indeed impact urinary incontinence and should be taken into consideration during urodynamics testing:

For example, take a look at this study, "Does posture affect cystometric parameters and diagnoses?" which was published in 2004. ~ http://www.springerlink.com/content/wcvj5nx9n5fn571t/

======
"The objective of this study was to investigate the effect of lying and sitting positions on urodynamic parameters and diagnoses. This prospective study was carried out on 96 women with urinary incontinence who underwent urodynamic assessment. Cystometry was performed both in the lying and sitting positions....

"Two (2%) showed stress incontinence by lying cystometry, and 53 (55%) by sitting cystometry.

"During lying nine (9%) demonstrated detrusor overactivity, while 53 (55%) demonstrated detrusor overactivity in sitting position.

"No case of mixed incontinence was diagnosed by lying cystometry but 17 (18%) cases were detected by sitting cystometry.

"This study explains the higher detection rate of stress incontinence, detrusor overactivity and mixed incontinence by cystometry in sitting position. Therefore, we recommend that sitting posture is preferred over lying position for performing cystometry."
======

An editorial comment states:  "Only a few women with urinary incontinence complain of urinary loss in lying position; in order to achieve a high correlation between subjective complaints and urodynamic findings, it is important to perform the investigation under everyday conditions, which at the very least means in a more up-right position."

Quix, have you asked your urologist why she tested you in the supine position?
Helpful - 0
147426 tn?1317265632
Nice discussions, Wind and Water, but I feel your last statement is overstated.  The study does not suggest that all exacerbations are caused by stress, just that they can be.  They just state that stress can be a trigger.

So, the analogy to a DMD is appropriate.  We due what we can to reduce stressors and our rections to them and we take a DMD.

I must also remark that once an exacerbation is begun, the cascade of events that occurs is already in play.  Merely reducing stress during an exacerbation will not necessarily reduce the symptomatology of it.

Ironically, of all the people on the forum, I would say I have the least stress.  I have little to no financial hardship, a peaceful, healthy and happy family, a secure income, and mostly do only those things I enjoy doing.  I have a couple hobbies that I enjoy immensely.  And I keep my mind moderately stimulated.

Ironically, my greatest source of stress is the urinary incontinence.

Finally, I cannot identify any true relapses in the last year.  The incontinence has been insidiously worsening for the last two years, and worsening faster since last winter.

Your voice to remind us that our bodies do not exist in a vacuum without our minds is always welcome.

Quix
Helpful - 0
Avatar universal
Debs, you said, "I can barely walk W&W is that my mental state or not??  When I can't feel anything from my waist down??"

According to the medical literature [see my previous post], your "mental state" plays the following role:

To the extent that your walking difficulty is caused by MS exacerbations, that is the extent to which you could help reduce your walking difficulty by finding effective techniques of stress management.

Effective stress management can be at least as helpful as DMDs, in reducing future exacerbations.

I can see that the medical researchers are quite excited by the data.  It opens new avenues in the treatment of MS.

Debs, I hope this helps answer your question.
Helpful - 0
Avatar universal
Quix, thank you for highlighting important distinctions:  I am not proposing that one's state of mind brings on MS [ie, the disease itself].  Rather, 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.

For example, there is a large body of medical literature that describes the relationship between Stress and increased subsequent MS Exacerbations.  Namely, stress leads to exacerbations... and exacerbations lead to stress.  This is a two-way relationship.

But the research does not, I repeat, does not imply that MS patients are *responsible* for their exacerbations.  This distinction is expressed by the authors of a recent meta-analysis [see "Association between stressful life events and exacerbation in multiple sclerosis." ~ http://www.bmj.com/cgi/content/full/328/7442/731]

They report:  "There is a consistent association between stressful life events and *subsequent* exacerbation in multiple sclerosis. However these data do not allow the linking of *specific* stressors to exacerbations nor should they be used to infer that patients are *responsible* for their exacerbations."

They also quantify the effect of Stress, as it relates to increased *subsequent* exacerbations:  The effect size is 0.53.  By comparison, the effect size of the Disease Modifying Drug interferon beta, as it relates to decreased *subsequent* exacerbations is only 0.36 in the first year, and 0.30 in the first two years.

In their words:  "the *negative* effects of stress on exacerbation of multiple sclerosis are at least as great as the *positive* effects of a class of drugs widely considered to produce clinically meaningful results."

To be clear, the authors do not suggest MS patients should stop taking DMDs.  Rather, their research suggests an *additional* means of reducing future exacerbations and symptoms.  Namely, MS patients can help themselves by taking DMDs... and by finding effective means to cope with stress.

Quix, to the extent that your Urinary Incontinence is caused by MS exacerbations, that is the extent to which you could help reduce your Urinary Incontinence by finding effective techniques of stress management.
Helpful - 0
923105 tn?1341827649
Very eloquently explained Q.

I agree with Ess, without substantial evidence how can we make make claims of our mind taking over?  Mind over matter, no I don't think so:/

Me for one, I will never give in, and it's not due to my mental stability or not - as the case may well be, we all have our lives to lead, and I agree with Ess, and also W&W - differing opinions, but both well thought out.

However, (hope I'm not starting up a Hornets' here) that there is a time and place for everything.  I don't IMO believe that for example Quix's problem is down to mind set, if it's happening, it's happening - and no matter how hard we fight through MS we can't fight it back - within reason, but only do our best to carry on

I can barely walk W&W is that my mental state or not??  When I can't feel anything from my waist down??  My head is strong, but my legs, no matter how hard I try, will not cut it!

When I was dx, my Neuro told me that not everything that happens to my body during the course of my life-time will NOT be down to MS alone , and to be careful not to assume that it is!

EOM

Debs

Hope your feeling better quix, and I also agree with you that this should be tagged onto another thread!

Just my 2 Euros worth:)

Debs

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