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The Waterways, From A to Z
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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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44 Comments Post a Comment
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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
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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
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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
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The urodynamic study was normal?  Wow.

Did you "feel" normal during the study?
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198419_tn?1360245956
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

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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
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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
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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.
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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
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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.
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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
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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!)
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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
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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...
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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
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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.
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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
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"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.
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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
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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
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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
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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
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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.

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(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.

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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.
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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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I did not suggest that urinary incontinence cannot be influenced by psychological factors. That would be a foolish assertion, considering all the ways our minds and bodies interact. I am a great believer in the mind/body connection and all its implications. But how common mental/emotional factors are in this condition is up for debate. Probably very common in people with dementia.

What I am emphasizing is that such symptoms are extremely unlikely to be stand-alone ones where pyschological problems are a factor. And most importantly, I commented in terms of Quix only. Her degree of disability from this cause is extreme. Each individual's situation must be evaluated separately; it is not helpful to make generalizations about 'the vast, overwhelming majority,' particularly when referring to MS patients. Those of us who have dealt with MS over time recognize how individual our disease courses are.

Each patient who has undergone years of limbo before diagnosis becomes cognizant of the possibility of psychological factors muddying the diagnostic waters. I would imagine that few groups of patients are more aware of the mind/body connection than MSers. We have literally years to analyze symptoms from every possible perspective, and we are constantly told by incompetent neuros that we are suffering only from stress, etc. I see no reason to add the burden of psychological causes for incontinence or other symptoms unless there is compelling evidence that this is so. The last thing MSers need is *more* push in that direction, especially when very objective tests often tell the physiological tale.

I hope that you meant 'erroneous charicterization' and not 'caricature.' If you have evidence that incontinence in a significant percentage of *MS patients* has at least a partial psychological cause, please provide citations.

ess
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Ess said, "it is not helpful to make generalizations about 'the vast, overwhelming majority,'"
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I stand by my statement:  Indeed, the vast, overwhelming majority of people who suffer incontinence with a psychological contributing factor are NOT "extremely disturbed individuals."

Moreover, it is *very* helpful to proclaim this fact.  And to proclaim it often.



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Ess said, "I see no reason to add the burden of psychological causes for incontinence or other symptoms unless there is compelling evidence that this is so."
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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.  This is simply a fact of human nature.

The "compelling evidence" is already available to you.  There is a large body of medical literature on the topic.  Interested forum members will have no trouble finding supporting material.

Moreover, it is *not* a burden to accept and embrace the existence of contributing psychological factors.  Rather, it is an integral part of healing and promoting health.



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Ess said, "The last thing MSers need is *more* push in that direction, especially when very objective tests often tell the physiological tale."
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We are helped, not hurt, when we are encouraged to remember BOTH directions, to pay attention to BOTH mind AND body.  Moreover, we should insist that our doctors embrace BOTH.

Yes, it is infuriating when some doctors dismiss us with "it is in your HEAD."  But we fall into a trap, if we reflexively respond with "No. It is in my BODY."  That is a meaningless fight, because neither side is the truth.

The truth is we are not binary beings.  We are our minds AND we are our bodies.  Both.  At all times.



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Ess said, "I hope that you meant 'erroneous charicterization' and not 'caricature.'"
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Well, I stand by my statement:  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.

A caricature is an exaggerated, distorted portrayal.  For example, claiming that such a person would be exhibiting "very severe symptoms of emotional disturbance" -- that such a person is "extremely disturbed" is a caricature.

I suppose the word, "erroneous," may be redundant.  A caricature is erroneous, by its very nature.  :)



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Ess said, "If you have evidence that incontinence in a significant percentage of *MS patients* has at least a partial psychological cause, please provide citations."
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Again, 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.

This is simply a fact of human nature.  Having MS does not exempt a person from his own human nature.  Therefore, the percentage is not only "significant" (as you put it), but it is unanimous.  It is 100 percent.

I hope this clarification helps.
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Actually, it doesn't.

I repeat-- Please provide citations. I didn't find any, and I am an 'interested forum member.' If there is a large body of medical evidence that a significant percentage of MSers with incontinence issues have psychological issues at least in part to account for those symptoms, it should be easy for you to comply with my request.

I find your arguments less than compelling. Of course human beings have psychological reactions to their physical troubles. What's to argue about that? That, however, is quite a different matter from insisting that ALL symptoms have some psychological basis. It appears that you are looking for a way out of your untenable position by suggesting some fuzzy metaphysics. This is a discussion of a specific symptom found often in MS, for which ample physical causes have been identified.

It is quite clear that there is nothing exaggerated or distorted in what I am saying, thus there is no caricature on my end. By not providing any evidence of your claim as it relates to MS, you leave me to conclude that it is your personal opinion only.

ess


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Avast, cranky bladder!  Quix,  I'm sending good thoughts your way, and hope whatever you pursue provides smoother sailing.

I'm grateful my bladder symptoms have eased, somewhat.  Now, I just list to port, occasionally...
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Ess, sorry it's not clear for you.  But I'm glad to have contributed to the discussion, and I've stated everything as clearly as I could.  Also, I'm particularly glad to have spoken up clearly, in rejecting the distortions and caricatures that discourage MS patients from serious consideration of the psychological contributing factors to multiple sclerosis lesions and symptoms.  :)

Quix, I am inspired to do more research for you, to give you additional treatment ideas to help you navigate to dry shore.  I'll post again, later.  :)
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Some thoughts for you, before the weekend.  :)

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Chilli Peppers?!
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Something surprising... According to Gary Null, chilli peppers "have been shown to have a positive effect on an overactive bladder and on people who have incontinence. It can block contractions that cause unpredictable loss of urine."  As a bonus, "chillies are anti inflammatory."
~ http://www.gnhealth.com/NLRCalthealth.php



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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."
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Interesting.  My test was done while sitting.  Why was your test done in the supine posture?  And I wonder how the different postures impact incontinence.

"Posture - how does it effect incontinence?"
http://www.*************.com/incontinence/c/15224/95935/incontinence



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Quix, you said, "Dr. Crawford mentioned Percutaneous Tibial Nerve Stimulation and EnterStim both of which I will ecplore with my Uro-G."
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Coincidentally, before I understood what is meant by InterStim, I found some really interesting articles about neuroprostheses.

(1)  "An implantable neuroprosthesis for restoring bladder and bowel control to patients with spinal cord injuries: a multicenter trial"
http://www.ncbi.nlm.nih.gov/pubmed/11689969

(2)  "Economic consequences of an implanted neuroprosthesis for bladder and bowel management"
http://www.ncbi.nlm.nih.gov/pubmed/11689970

(3)  "Neuroprostheses to treat neurogenic bladder dysfunction: current status and future perspectives"
http://www.ncbi.nlm.nih.gov/pubmed/14657996

(4)  This article was written back in 1977, and the device was implanted in a baboon, but here it is for your enjoyment.  :)
"An implant to empty the bladder or close the urethra"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC49270/



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A closing thought for the weekend
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I'm not diagnosed yet.  However, if I were diagnosed with MS, I would tend to assume all my symptoms were related to the MS.  But of course that would be highly unlikely.

There are so many physical problems that people encounter during the course of a relatively normal lifetime.  Urinary incontinence, for example, is a common problem for women (*ahem*) our age.

Therefore, my last suggestion for today is that you consider any and all treatments -- even treatments not found helpful in MS.

I plan to return with more ideas.  Meanwhile, have a dry weekend.  :)
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I think the discussion/disagreement we've had has run its course on this thread, considering that no other members have jumped in in some time.

If you'd like to continue it, AND if you have any scientific evidence to support your claims, please do so through PM.

I am weary of unsubstantiated allegations that impune my intelligence and integrity. There's no place for that on this forum.

ess
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As this is my original post, I am taking the liberty to comment on the disagreement.

First I would hope that no one here on the forum EVER makes comments that suggest that another member does not or cannot understand an issue nor would suggest that someone is not being righteous in their repsonses.  That said:

I saw the discussion as one in which two very different issues were being pitted against one another.

The first was was more of a causal belief - that one's mental state does not bring on MS nor any of the serious symptoms we undergo.  I wholeheartedly am in agreement with this.  I, in no way, feel - or have ever felt - that "I"created or played a role - in developing my disease or it's horrible effects.  And I would NOT believe any argument that suggests it.  Basically, in my mind, "Sh*t Happens".  Anyone who suggests - as some popular literature has done that MS arises from some defect in character or mindset can prepare themselves for a swift kick....and a very loud raspberry.

The other argument I also agree with, but feel it has little to do with the first one.  Yes, once our disease manifests there be be an enormous interplay of our minds and bodies having to do with how we perceive and handle the symptoms.  It was here that I questionsed a psychological role in the worsening of my incontinence.  Our doctors miss understand this all the time when they say something is caused by stress, anxiety or depression.  They fail to understand how having such an illness can impact our mind/body and our life.  I would extend the Mind/Body duality to include our environment, friends, family, work.  It is an enormous "One".

Sometimes this discussions would benefit from more careful reading of the other posters' comments and sometimes they are inevitable due to our differing views of the world.  

Beyond this, if we must, let's talk about Mind Body Life Interactions on another thread.

Quix
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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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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.
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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.
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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
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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."
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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/

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"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."
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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?
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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
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Quix, you said, "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."

Point well taken and much appreciated.  Thank you.



And you said, "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."

Please keep in mind that some of the most stressful life events, according to the "bean counters" who quantify such things, include seemingly positive life events.

For example -- moving to a new home;  rearrangement of household members & relationships;  retirement or cessation of profession;  outstanding personal achievement;  and vacation -- to name a few.

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Yes, I am aware of those stressors and often emphasized them to my patients.  Not all stress in unpleasant.  One could say that I was stressed when I moved downstairs and my parents moved into our main floor last fall.  And that was when the great improvement that I had made in PT disappeared.

Even so, I think that I have an enlarging lesion causing all of this.  Notably, I have just had my first, dreaded episode of fecal incontinence, yesterday.

So.  I think we have done this topic thoroughly.

On an better note.  I am now in my third week of double dose Oxybutinin.  I am now occasionally able to stay continent all the way to the bathroom.  I will say, though, that the visual and mental triggers discussed in the Chat last week are huge.  I am more likely to lose it while getting out of the car after returning home, while putting my keys in the front door and when I am within sight of the john (No, not you, John).

Quix
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You said, "In all honesty I was not completely supine, but probably at about 30 degrees.  So, I was reclining, but not completely supine."

But have you ever experienced incontinence at about 30 degrees?  If not, then the test did not approximate the everyday conditions in which symptoms appeared.  This is the point of the study.  Namely, one should be tested under the same circumstances in which we experience the symptom.

I'm glad your urologist believes you despite the negative test result.  My urologist does, too, and that's important.  You're right, the negative test result is moot if our doctors are willing to treat.

On a related note, would the MS spinal lesion cause urinary incontinence regardless of posture?  If yes, then does the fact that urinary incontinence does not occur in the supine position suggest that the incontinence might not be due to the MS spinal lesion?  It is taken for granted that the MS spinal lesion does indeed exist;  the question becomes is the MS spinal lesion responsible for the urinary incontinence in this particular situation?
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I had my first episode of fecal incontinence, a while ago.  That certainly qualifies as a stressful life event for those of us older than 2.5 years old.  ;-)
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Good night.  More ideas to follow.  :)


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Quix, please google latch-key incontinence. This is largely described as being a reflex rather than an emotional response.

ess
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