www.incontinentsupport.org

Sounds kind of like me except they finally pared it down in 1983 to MS. Did the urodynamic tests and didn't see the spasms on the screen he did see enough results to say there were problems. I started with bed wetting when I was 25 (1972). At first they said it was nerves from the divorce I was going through. But in 1983 the University of Oregon Med school finally determined the MS. They said I was lucky as it could have hit my leg nerves and I'd be in a wheelchair. Bladder problems only show up as the first symptom in 5% of people with MS.
So far I'm still up and walking, working full time, just in diapers full time.

My bladder spasms showed up quite well when they did an ultrasound. I really don't feel any pain due to the spasms. Just the muscles twitching multiple times each day. I'm so used to the spasms I hardly notice them much. I'm sorry to hear about your MS. My mother suffered with MS for over 30 years. My wife wants me to go out and get a "second opinion" regarding the original diagnosis. I tell her that the medical prefessionals took over a year to determine I suffered from a neurogenic bladder due to nerve damage and I'm not going to go through everything again. If I thought there were even a small chance the medical community could help me I'd go through all the tests again. About the only thing they could do would be to implant a valve that would open and close flow from my bladder.

I've had intermittent incontinence for 40 years that went from idiopathic to diabetic cause just because I got diabetes somewhere along the line. Now I'd like to see if there is something that can explain this stuff but Drs are reluctant to do any tests mostly because they know I have diabetes and there is a very good chance the cause is neurological so they figure there is little point. I'm sort of inclined to agree, but there is this nagging desire to get a definitive answer. I'm not sure I really want to go through some of the tests that were described (catheters and rectal devices, yuck). So maybe it isn't all that critical to go there. As you say, once it is determined to be nerve damage, there isn't much that can be dome to fix it. In my case, it is only broke sometimes, so there is something there (all be it diminished) that does work, just not all the time. The part that drives me crazy is the uncertainty of the situation. In some ways, I'm better off in diapers (like now) but I really like my continent self and try to stay continent as much as possible. But I am finding that my continent level is going down, the dry times are much less than in years past. Now I'm lucky if I get a few weeks, whereas in years past I could go months, frequently many months without any incidents. At some point, the transitions from dry to wet will cause too much pain to endure and the path of least resistance will by diapers 24/7. Has anyone else had these issues? When did you finally just give up and went with diapers?

I talked to my family practice doc this morning. I was there for a sinus infection and to get some antibiotics. Anyway, I talked to him about my bladder and bowel incontinence. Basically, I have complete incontinence. I described to him my situation, or redescribed because I've told him before. I just brought it back up and told him my incon has gotten worse. I re-told him about my overdose with that careless psychiatrist. He said normally when you have an overdose, there is no permanent damage. Once the patient comes off the drug(s), then the side effects go away. But that is not the case with me. My incon started with a dribble 3-4 years ago and it has gradually become complete bladder and bowel incontinence. He made notes. He is referring me to a neurologist because I asked him about nerve damage. He said he simply does not know and my case is complicated. So far, no urologist or gastroenterologist has given me a definitive answer. They just say that they think my psych meds make me leak. However, no where in any literature on any of my medications does it say loss of complete bladder and bowel control. I can't find it on any website or any drug literature. If it was caused by my psych meds, then it should clear up when I change meds. Once again, this isn't the case. I have changed meds many times. It was originally blamed on depakote. I have not taken that med in almost 2 years. Yet I still have incontinence issues and like I said, they are worse than ever. Also I have been on 7 or 8 different bladder medications for OAB and urge incon caused by bladder spasms, and these have all failed. Not a single one was successful. So what is going on here? All this leads me to believe that there is something else wrong with me. I think I may have a nerve problem but I'm not sure. My primary doc is sending me to a neurologist for some guidance and probably some tests. I have to find my most recent urology report and take that with me. I just think there is something seriously wrong with my body and I don't want to accept undetermined etiology. I want an answer. My doctor warned me that there may be no answer. I still want to try anyway. If the neuro doc can't give me some guidance, I will then give up and consider all avenues crossed. I am not even looking for a cure anymore. I just want a cause. Something concrete.

I went to the neurologist this morning. They can't give me any information regarding an overdose causing my bladder and bowel incontinence. They said I have a very complicated case. I saw a PA-C and a MD. Both were dumbfounded. They are going to do a lumbar MRI and a nerve EMG study. I described to them in detail my incontinence and what happened to me. I also have some blood tests to do that are fairly simple. I'm not worried about the blood test because its the same test my psychiatrist does and they have been normal. I am not really concerned about the MRI either. They are looking for holes in my spinal column. If I had those, I would have pain, numbness, and tingling in my body. I have none. They asked me about sexual disfunction. Again, I have none. Everything works just fine. The docs said they are running out of stuff to look for. So far, I just have unexplained incontinence of bladder and bowel. They said maybe my psychotropic medications are causing my incontinence. The only problem is none of my meds list incontinence in the side effects. I'm like 1 in a million it seems. Very puzzling!

Hi Don

I can understand how you feel. For me, I have diagnostically tested peripheral neuropathy due to diabetes, which affects my legs, feet, fingers and arms. I have periodic bladder and bowel incontinence that seems to have no triggers. All the Drs. just say you have diabetes and don't test much further. The urologist did all the usual things to look for cancer and that kind of stuff, all normal. The issue is I have had probably 50 years of incontinence but only 20 years of diabetes. When I was young, I went for months between accidents, now I'm lucky that a day doesn't go by where I have a minor leak or two, but frequently, I find out that my bladder has decided to empty when I wake up or feel a wet stream running down my leg. In those periods, a diaper is the only thing that makes me sociable. They last for days where I can't feel anything down there. Sometimes a few days, sometimes a week or more, the mild sensation to pee comes back. I don't really feel my bladder being full, just I get a feeling that something is about to trickle out so I usually don't wait long. What this means is that I frequently go through the possible embarrassment of an accident, but I really like continence and maybe it is a denial thing but I prefer going to the bathroom to go rather than just change my diaper. But I can't get anyone to look further to see why this is happening. It seems neurological to the urologist and the neurologist, but where do we go from there. If I could find a way to avoid these random wet cycles, I'd be a happy man. But maybe I'm just fooling myself. I'd like to know why. I reject the notion that it is totally caused by diabetes. If my bladder didn't work at all, a neurogenic bladder, I'd understand that. The urologist said my inside sphincter is screwed up, but men have 2 sphincters. If either of these were a cause, I'd think I'd need a diaper all the time, but I don't. When I was younger, I only had an accident once every once in awhile, now the accidents are much more frequent and I'm just worried that I will just have to give up and let the diaper deal with it. How do others deal with this? Can you tell when you are going to go and you just do it? The other thing is bowel issues. I get frequent urgency where it announces a imminent expulsion in 20 sec. If I'm wearing a diaper, there is no way to get it off soon enough. Sometimes when I feel the need to pee, #2 happens without any notice. So this is most difficult to deal with. Do you try to do #2 when you change a diaper or how do you manage that part? When I'm in diapers, it gets the works and that becomes most inconvenient. I sometimes need to change 3 or more times due to #2 and then nothing for days. I've been dealing with this crap (pardon the pun) for over 50 years now and you would think that by this time, I would have learned something or the Drs. would have a clue, but so far, it just hasn't happened. I'd really like to know why and if the Dr. said that there is nothing to do, I'm ok with that. But I have this feeling that there is a fix. I'm ok sometimes. I'd really like it to stay that way or at least stay one way or the other. The switching back and forth causes much stress, but I prefer being continent when I can. Have anyone had a dilemma like this? It is nerve raking.

Don't feel too bad. I gave up on doctors trying to cure my incontinence when I was a teen. As I understand it my problem comes from a genetic glitch in the way my bladder is wired... which leads to all sorts of unpredictable happenings. It's something that has been on my mother's side of the family for at least 3 generations and several family members have it to varying degrees. Mom's side of the family is mostly female (of all my cousins there are 5 of us male, I only have two uncles, my mom is one of 7 children) and just my luck I end up being the only male in the family with problems. Society seems to be biased against males having bladder control problems, for whatever reason. By that I mean a woman can get away with having leakage or an accident much easier than a man can. But I digress.

I tried numerous treatments and specialists when I was younger but in the end I wound up following my grandmother's advice "You just deal with it and keep on living." So diapers it is for me. Reading other peoples' stories on here I consider myself fortunate, as my bowels behave themselves most of the time.

_________________
~~PuddleGuy

I did something productive tonight. I called Pfizer, the maker of Geodon, the drug i was made toxic on by that psychiatrist. They took down my info, and the dosage I was on, and also recorded the side effects I experienced including diarrhea, and bladder incontinence. These were the least of my troubles. I could not function or care for myself at 280mg of this drug. They noted that. I could not do anything including hold a fork to feed myself or hold a pen because I shook so bad. Thats what this psychiatrist did to me. It was hell. The took down all this information. They said that during the clinical trials, people did report bladder incontinence as well as a general neuropathy at certain doses. Nobody ever reported bowel incontinence. But that may just be because they didn't test it long enough. Once the clinical trials were over, they did not follow up with the patients. So maybe there is someone out there like me. They said my psychiatrist can call Pfizer and publish my case to other psychiatrists and others can compare notes between their cases and mine. Its kind of interesting.

I talked to my neurologist this morning and we discussed neuropathys relating to the med. I feel the one that fits (we'll have to wait and see from my tests in December) is autonomic neuropathy. It controls the sensation of the bladder and bowels. I don't feel mine getting full; I just spasm and leak. I do feel the intense spasm though. But I can't control it. I feels my bowels too but I can't control them either. Also with an autonomic neuropathy, patients can have frequent diarrhea. I have this every day for the last year and a half. It could be due to the way the neuropathy affects the nerves in my stomach and intestine. Food passes through my body so fast that I have diarrhea all the time. I may be wrong, but this diagnosis explains alot. And autonomic neuropathys can be caused by medication. Thats another check in the block. Only time will tell. My EMG study is Dec 5 at 9:00 am. I have a follow up appt with the doc to discuss the results. I like that. No waiting!

Good for you Don in being so pro-active in your issues and making that call, many would not take that step, it is hard enough just dealing with your own physician and Uro most times, hope you can get some answers, may not solve your problems, but answers are good to finally get, if they arrive! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Don, from all the things I've read, autonomic neuropathy does make sense for many with idiopathic incontinence like yours and mine. I too can't feel the fullness of my bladder, but mine at times just drains without any warning or signal. I was at the gym this morning without a diaper and my sphincter let go, not a pretty sight. I have little doubt that some neuropathy is at work here, but what is causing it. For me, I'm diabetic, under good control, so in theory, my nerves should be happy, but my ankle is hurting more lately and my bladder is not cooperating at all. Why? And where is it going and could I fix this? I guess getting definitive answers are good to get, but I'd really like to be continent again if possible or see if there is a way to see some reversal in the symptoms. But I can't get anything if the Drs. don't try. That is my biggest issue.