As part of the ongoing conversation we have about bladders here - I offer this story from med scape, reporting from the lastest AUGS meeting last week. It appears that MS and bladder problems are finally being recognized as going together.
"American Urogynecologic Society (AUGS) 30th Annual Scientific Meeting
This coverage is not sanctioned by, nor a part of, the American Urogynecologic Society.
From Medscape Medical News
Overactive Bladder Symptoms in Patients With Multiple Sclerosis Go Untreated
September 25, 2009 (Hollywood, Florida) — Most patients with multiple sclerosis (MS) have moderate to severe overactive bladder (OAB) symptoms but they are not receiving appropriate evaluation or treatment, despite the fact that the condition is easily managed with current medications, Sangeeta T. Mahajan, MD, from University Hospitals Case Medical Center in Cleveland, Ohio, reported here at the American Urogynecologic Society 30th Annual Scientific Meeting.
"Something can be done for these patients, absolutely. Overactive bladder is very treatable and we have many medication choices. We can treat them with botox, we can treat them potentially with other medications, but unfortunately we're not really doing a good job," Dr. Mahajan told Medscape Ob/Gyn & Women's Health.
The statistics for MS and urinary symptoms are sobering, she said. Of the 400,000 Americans with the disease, 75% report urinary incontinence, and 50% to 80% have voiding dysfunction. One tenth of patients with MS, which affects women twice as often as it does men, present with urinary retention as their first symptom.
Dr. Mahajan presented results from a survey that was sent out to 16,585 patients as part of the North American Research Committee on Multiple Sclerosis (NARCOMS) Project in the fall of 2005. In total, 9702 individuals with MS (7312 females and 2390 males; 58%) responded.
The survey included questions about quality of life and history of urinary and urologic evaluation and treatments. Questions specific to urinary dysfunction asked about frequent urination, urgency, urine leakage related to the feeling of urgency, and getting up at night to pass urine. All questions were scored on a scale of 0 to 3, and an OAB score was calculated from the responses.
Moderate to severe OAB symptoms were common in this population. Of the respondents, 4,606 (65%) had an OAB score of 5 or more; the median OAB score was 5.1. In addition, 46% had urinary frequency, 43% had urgency, 25% had urge leakage, and 48% had nocturia.
As OAB scores increased, so did disability. A longer duration of MS was associated with a higher prevalence of OAB symptoms. Intermittent catheter use was reported by 25% of patients, 10.8% used a Foley catheter, and 1.3% used a suprapubic catheter
The survey showed that less than half (47%) of patients had ever undergone a urologic evaluation. Only half the patients (51%) with moderate to severe OAB had ever been treated with anticholinergic medication. New medications, such as solifenacin, darifenacin, and botox, were used in only 4.6%, 2.9%, and 2.1% of respondents, respectively.
There has been a major push in neurology to address urinary symptoms in MS patients, but the message is still not getting across, Dr. Mahajan told Medscape Ob/Gyn & Women's Health.
"Neurologists are asking more frequently about bladder symptoms, but still not as much as they should. And the patients who do get asked are not being treated with the up-to-date medications we give everyone else in the population who go to see a urologist or a urogynecologist," she said.
For Mikio A. Nihira, MD, MPH, from the University of Oklahoma Health Sciences Center in Oklahoma City, who comoderated the session, even treatment with an older medication would be worthwhile in these patients.
Dr. Nihira told Medscape Ob/Gyn & Women's Health that "people have criticized the use of simple oxybutynin as opposed to a newer drug. But one thing that I have observed in taking care of these patients is that they tolerate dry mouth much better than patients who do not have MS. I think it's unfortunate, but it's my guess that they deal with such a harder life. These patients are usually so debilitated, so if you have a hard time walking, wearing pads and having dry mouth may be more acceptable. I think it's a very interesting study."
Comoderator Gretchen Lentz, MD, from the University of Washington at Seattle, added that the study was particularly significant because of its size.
"We downplay the level of evidence for a survey type study, but even though it is a survey, it had a large population and a very high response rate of 58%. The significant finding is that these people have moderate to severe incontinence and have not been treated. So there's a lot of room for improvement in the care of these patients."
Dr. Mahajan disclosed that she is a member of the speaker's bureau for Pfizer, which manufactures Toviaz (fesoterodine fumarate) and Detrol (tolterodine tartrate). Dr. Nihira and Dr. Lentz have disclosed no relevant financial relationships.
American Urogynecologic Society (AUGS) 30th Annual Scientific Meeting. Presented September 24, 2009.
Very interesting stuff, LL. Kudos for fetching it over here where we can soak it up.
Question: Any idea how the medical specialties would want to discern between bladder issues caused by MS and those caused by prostate issues? In other words, if I told my PCP (who is listed as a Family Medicine & Internal Medicine specialist) that I was having tinkling troubles, in which direction would he expect to look?
I just realized that there are at least a couple of very bad puns in the above, but I'll leave them. They were not intended. I just want the answers.
Nine years ago, I asked my Gynecologist about my bladder issues. I told her I had the urgency, frequency, getting up at night, and having many bladder accidents. Her quick answer was this, as she poked my very large abdomen: "It's because you are overweight". Now, she was a good Dr. in the sense that she had performed a complete Hysterectomy on me and did a great job on that. The fact that she so quickly judged my bladder issue as a result of obesity really ticked me off. I haven't been back to her since. When I discovered I have MS, I so badly wanted to write her a letter and say,"See, I told you there was a medical problem causing this".
I'm in a no win situation. I have Polycystic Ovarian Syndome that makes it almost impossible to lose weight. I have MS and can't walk for exercise. Without exercise, I sure enough won't lose weight. When I get to heaven, I am going to have my glorified body that is in no pain nor will I be obese.
In your case PD,because you are walking the highwire without a diagnosis, I think the prostate is what would be checked first. Not fun, but a necessary part of the routine exams for you men. I tend to think of it as payback for all the tests the us women undergo regularly that men escape. LOL
Then I would guess your PCP is going to try drugs with you, because they are plentiful. If there is little or no success with that approach the doctor would then reevaluate the course of treatment.
Plumbing issues for women are so much more complicated and require a different approach, however I do read about men also learning pelvic floor exercises.
As you know I am no expert on any of this. But I can share my own experience. The reason why my doctors immediately labeled my problems as neurogenic was because the incontinence issues came on suddenly. There was no gradual increase in the problem as would typically be seen.
so my answer for you is he would need to look high and low!
The urologist is the one who referred me to the MS clinic when I wen to see him for my referral about bladder retention. So far no one has figured anything out, still waiting on my spinal MRI, it is not until December 1/09 (yes I live in Ontario, Canada :| ) quite the wait time for MRI, at least 4 months, then I had to reschedule as I was out of the country so I have to wait 4 more months.
I do have a follow up appointment next week with the urologist. My new problem is electrolyte imbalance. (low sodium) which I figure must be due to the retention. I have to constantly drink gatorade or I get really out of it.
Everyone talks about the urge to go, and go often. But does anyone have bladder pain. I have had pain in my bladder sense my MS symptoms started. I've been to a urologist, and they ran every test possible. Blood work, CT scan, ultrasound. and the doctor say that there are no problems. The pain is light to moderate most of the time, but can be worse at times. Just wanted any thoughts on this?
This is a great article which I was going to bring up tomorrow. Good going, Lu.
It really makes clear that urinary problems, are incredibly common in MS and are under-investigated and under treated. If they are underexplored in MS, they are likely underexplored in the general population.
Even though there is another thread discussing urine incontinence on the board I will repeat what I said there. This problem needs to be 1) Complained about. We need to tell our doctors. 2) worked up. No patient, man or woman should be comfortable with the problem being dismissed. No good doctor should toss it off as due to obesity or age or childbirth. Those factors may contribute to it, but incontinence is terribly hard to live with and may lead to urine infections, renal disease and social isolation.
All avenues should be explored. A woman should have a urinalysis and culture if indicated and a pelvic exam, including rectal. Constipation can be a major player in both retention and incontinence. A man should have his urine checked and have his prostate evaluated. That is just basic medicine. If problems are found with the basic workup then those should be treated.
If no problem is found or if the problem is treated but the urinary issues continue there should be a referral to the urologist or a gyneurologist. The exact nature of the problem cannot be figured out just from the pattern of the problem. All patients need Urodynamic studies which evaluate the ability of the bladder to expand in volume, whether or not it spasms inappropriately when it is full, whether or not the person can feel that it is full and how well the urethral sphincter can stay shut. Then it measures how well the bladder expells the urine on command, whether or not it spasms and relaxes or pushes out the urine steadily. Also they look at whether the sphincter can relax and remain relaxed throughout urination.
I know I have talked about all this before, but a trial of Incontinence Physical Therapy may be useful. A study I read last spring showed that 50% of MS patients with neurologic urinary problems benefit from physical therapy. This includes both men and women. I agree with any of you that don't think this makes sense. But, I have slowly realized why it is true.
As we suffer problems with our being able to hold our pee until the right moment we also develop defense behaviors that lead to worsening of Overactive Bladder symptoms. Picture this. We suffer our first episode of a little leaking with a strong urge. This, for many of us, is incredibly embarrassing if not actually humiliating. Be gegin to rush to the bathroom at the very thought that we might need to go. We begin taking advantage of every opportunity to void, whether or not we actually have a full bladder. This causes a very unnatural state for the bladder.
The normal rhythm for the bladder is gradually becoming full and emptying. As we change our behavior to keep our bladder empty, the bladder and brain assume a natural state of "always being empty". Because of this, even small amounts may send the signal to the brain as full enough to need to void. We begin to go ever more often and the bladder contracts against a smaller amount.
Incontinence PT is a process that encourages us to maintain the most strength in our pelvic floor muscles. It also returns, the extent possible, the more normal rhythm of tolerating normal amounts of urine in the bladder so we are not up and running at every slightest urge. I was stunned at how much increased control I had over my urge incontinence. It isn't the ultimate solution, but, again, 50% of people benefit. It may delay the need to use meds or allow us to keep our med dose smaller - both are good things.
PDan - If I remember you are in that time of life when prostate health is beginning to be a concern. The first step whould be to rule out any prostate issue. Then the rest can be looked at.
For all, if you are having urinary issues AND other neurological things that your doctors are dismissing, it gives you another point to press your doctors on.
Summrluv - you appear to be describing a syndrome in medicine known as SIADH - Syndrome of Inappropriate Anti-Diuretic Hormone (ADH) secretion. ADH is the hormone that causes us to loose salt in our urine. If it is secreted at times when it is not needed it can cause low sodium in our blood. This is not good. If the sodium dips too low you get weak, confused and ultimately the brain can swell and if it is not treated with appropriate water restriction and replacement of salt the end can be fatal.
Have you been worked up for SIADH? There are tons of causes ranging from things like brain tumors, neurological diseases and head injury, to infections, to urinary retention, to chronically drinking too much beer, to severe pain and so on and so on. The last thing you want to do is just instruct the patient to drink electrolyte drinks without finding out WHY the sodium keeps falling. If no one has tried to find out WHY your electrolytes are out of whack, then please query your doctors about SIADH and whether this is a problem.
Again I prove why I hold the presidency of the society for people who talk too much:
I have the same problem at times. I have the frequency and urgency issues, but I also get bladder pain at times too, and it is usually after I empty my bladder. Like you I have had every urological test known to man as well including urine cultures to see if it is a UTI, with NO answers. I am currently on Avadart 25mg/day and Ditrapan(oxybutrin) 50mg/day with limited result and extreme dry mouth. I guess it is something I have to learn to deal with. When I travel I travel with a "duck" and as far as store, malls and gas stations I know where EVERY bathroom is in a tri-county area LOL
Quix, you may hold that gavel as long as you like. You do a nice job with it. Your memory's still pretty intact, too, as I am 52 years, six months, and about a week old.
My bladder problem has not been unplanned leakage (and I am very thankful for that), but usually the inability to empty the bladder so it is really empty. It always feels like there's a good bit more that ought to flow out, but it just doesn't. Naturally, if the bladder never feels empty, it's not long until it feels as if it's getting full.
I suspect that this is probably complicated by the fact that I am a heavy water drinker, usually taking in about a gallon of water per day. This has been my habit since the mid 80s, when my kidney stone issues were first diagnosed (I'd had them since birth, but who knew?). All in all, I'd much rather deal with a bladder issue than one involving the kidneys, and I wouldn't wish the complicated congenital urological problem I had on anyone, not even my ex. Those pain management people might say they can fix almost anything, but I wish they'd been around for that saga.
Thank you so much for your insight... sounds pretty much spot on. At this point no one has suggested anything. so far I've only had a few ultrasounds /unrinalysis (two buy my family dr, then she referred me to the urologist) Then the urologist refereed me to the neuro,and ordered another ultrasound in the summer but my follow up appointment was canceled because he was called into surgery.
I have an apt. next week and I will talk with him about it. I really feel out of sometimes (weak, confused, shaky, muscles cramp up, can't sit still, unable to eat, head pain) it and goes away when I drink sports drinks / salty food.
I have the same problem. I have been diagnosed for about three years now,and this last year i have really paid attention (i'm sorry my grammar is terrible today, i'm having problems) i do feel like i have to go 100 times a day, but nothing. Sometimes i'm just sitting there on the toilet (sorry if it's too graphic!) and nothing happens! then, maybe a little bit, but i don't ever get that "AAAAAAAHHHHH!!!!!" relief feeling. It feels like my bladder is never fully empty. I really don't want to get on any more medication, so i decided to take an over the counter "water pill" and it seemed to work a little better. Still, no full relief...
Perfect timing for me - thanks. I was dx last night in the ER with neurogenic bladder and never even heard of it. I was there because of stroke symptoms not consistent with an MS flare but they did a heck of a work up.
All I know now is it was not a stroke (Thank God). My potassium is really low and I have a neurogenic bladder. The doctor and nurses were shocked how much fluid was in my cath bag.
Waiting to hear from the neuro on the rest of the tests as well as today's follow up urine & blood.
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