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My question is for those of you with incontinence caused by nerve damage. I am wondering what symptoms you have besides incontinence? What type of doctor did you see to diagnose you? Was it a urologist? neurologist? What kind of tests did they do to determine nerve damage? I have thought about seeing a neurologist and describing my case. A little background on me...I have told my story on here a few times so I'm sorry for any repeats. I was originally diagnosed with bipolar disorder. I was given certain medications. But because my moods could not be stabilized, my doses were increased by a careless psychiatrist to unsafe levels. The meds I was on were Depakote and Geodon. Therapeutic levels of depakote are between 50-100. Its measured by your Valproic acid level. On this med, mine was 127 and I had horrible side effects including ataxia. The other med was Geodon. Its an atypical antipsychotic. Both of these meds work on the brain. Therapeutic doses of Geodon for a bipolar patient is between 80-160mg. I took 280mg. Way beyond the normal dose. On this med, I shook so bad I could not feed myself. Also, I was so tired I could not dress myself in morning. My wife had to dress me for work. I had weird effects on my head to. I described to doctors that it was like someone was clicking refresh in my head. My sight would go Poof, my ears would ring, things would go fuzzy and then eventually clear. All this took like 5 seconds. But it was weird and the doctors had never heard of it before. I had to go to the hospital in Bethesda, MD to get wheened off the meds. They titrated me down safely because I was overdosed and toxic. This was in October of 2008. By January of 2009, I had been taking normal doses of medications but I developed mild urinary incontinence. It was just a dribble and I wore pullups. By March, my incon progressed and I was wearing diapers. Nowadays, I have complete urinary incontinence. I don't feel my bladder getting full. I told my urologist this last time I went and he noted it that I don't get the feeling. I've looked it up and my bladder seems to be spasming. It works like I get no feeling as my bladder fills and then all of a sudden it spasms and forces urine out. This is textbook urge incon.

I also have bowel incontinence. Sometimes with this, I do not get any sensation that I have to go, I just leak stool. Othertimes, my stomach aches and I get the sensation to have a bowel movement. I feel it, but I just cant keep it inside my body until I can reach a toilet. Oftentimes, I am trying to walk calmly to the toilet to take care of business and I soil myself. Its quite miserable. The bowel incon developed over the last year and a half and I'm wondering if the two have the same cause? I have been through numerous medical tests and no cause has ever been found for the bowel issues. My Psychiatrist hypothesized that my drug Lithium is giving me diarrhea; which frequent diarrhea is a contributing factor for bowel incontinence. But I have bowel incontinence like 4 times a week. I lose control of solid bowel movements too when I have them. So I am gradually losing all bowel control.

I am making an appointment with my primary care doc to discuss if I could have nerve damage causing my incontinence issues. Do my symptoms sound familiar to any of you that have nerve damage?

My appt is not until Nov 30th so I got a while. I could not get in any earlier. My doctor is short staffed and booked up solid.

Hi Don
I can empathize with you. I have diabetes, neuropathy and sporadic incontinence. My Drs. think that the nerves around my bladder are shot, but I sometimes still get a sensation that I need to go. But there are times that I get no warning at all. In fact, I don't even feel it coming out, I feel the wetness on my leg as it comes running down or I'll feel the wetness when I stand up. I too have bowel incontinence which is very similar to your description. Just the other day, I had to go while walking into the grocery store while not wearing a diaper. The urge was so sudden that I didn't make it to the store restroom and had to drive home to get cleaned up.

The problem I have is the Drs. accept the answer that I am incontinent because of diabetes, but I can't get anyone to do a test that might explain why I sometimes know I need to go and sometimes I don't. I usually have no clue that my bladder is full. Sometimes when I go, a little comes out and sometimes I'm afraid the sewer will not hold it all. It is hard to describe what the sensation that I feel that tells me to go but it does work sometimes for weeks or months. But my dry periods are getting less and less as I get older and I'm afraid at some point, I'll need to be in diapers all the time.

I'd like to know what state my nerves are in so I'm approved to see my neurologist to see if there is anything to get more understanding. Apparently Stanford has some program for doing these tests. I'm hoping I can get some answers, although not sure it will lead to anything. Nerve damage of this type apparently is hard to test and even if they find something, they can't fix it. I think that is why my urologist feels it is not worthwhile testing. That may be some of what you are getting too. What point testing because there isn't much that can be done it fix it anyway.

Dangoch,
I have a pending claim with the Department of Veterans Affairs. If I can get a doctor to confirm that I have nerve damage as I suspect I do, then it will support my claim that much more. My Bipolar is service connected as is my urinary incontinence. I had them both in the service. I am trying to get the bowel incontinence connected as a secondary disability. I think its related to my primary service connections. It just didn't show up till a year after I got out. So I have to prove its connected. But if the doctor says its nerve damage caused by my toxicity of that careless psychiatrist (which happened in service), then that will permanently tie my incontinence to my Bipolar Disorder. Basically, I have the second because of the first. And because nerve damage is permanent, there is nothing they can do for me, the VA can never take that rating away. It will be a huge win for me. Basically the VA can't argue and I will never have to prove my case again. Thats a win win. I'm trying to shoot for a permanent and total rating (P&T).

Good luck. I sure hope it all works out. You do have a disability lawyer working on your side I hope.

Dan

Don

Some of your systems sound similar to mine.
Before I was diagnosed I had and still have ringing ears, numbness in feet and hands, I already had some incontinence the worse was bowel, I could not even let the covers at night hit my feet it hurt so bad.
I saw several neurologist and nothing they were more caserne about incontinence my family doctor was stumped as was the Rheumatologists he sent me to.
I had many colonoscopies to fine the cause of bowel incontinence nothing was found.
I was getting depressed and decided to try one more neurologist my wife’s Gynecologist recommended. When I got to his office he gave me an exam told me nothing stuck out go home and try and live with it. Well I blew my mind told him now I know why his single says practicing medicine and on my job I was called a professional. He got quite mad but said he would do one test an EEG EMG. That same week he did the test left the room said nothing so I got dressed and started to leave. He caught me before I got out of the room told me he had good news and bad good news he found something, the bad news I had CIDP a rear type of neuropathy.

So from my experience if you know there is something wrong don’t stop looking for a good doctor and don’t be afraid to tell him or her everything that bothers you.

Lyle

What your Drs. were basically telling you is that you had idiopathic incontinence (cause unknown). I've always felt that it really means the Dr. is an idiot because he didn't look hard enough. I'm my case, they don't do adequate testing because I have diabetes. They just say the incontinence is due to diabetes and go home and live with it. Not exactly comforting. I'd really like to know what is going on. I don't know if a cure is possible, but if you don't look, it surely can't be fixed.

I appreciate what you guys are telling me. But I still have questions....

What tests did they do to determine incontinence caused by nerve damage? What doctor did it? Was it a neurologist?

For urinary incon, I have had urodynamics x 2, cystoscopy, PSA, and blood tests. For bowel incon, I have had colonoscopy, endoscopy, stool tests, blood tests, and CT scan of my bowels. I know none of those tests check for nerve problems. The only one I am unsure of is the urodynamics with all that stuff they hook you up to. I don't know what those leads are for. So the urodynamics may check for nerve damage but I don't know.

Don,

Ask your doctors think you have nerve damage they should be doing nerve conduction studies (EMG) to find the level and area of damage. It is not pleasant in areas that have good nerves. I have been through that several times.

_________________
When life hands you a lemon, make lemonade.

My neurologist did an EMG EEG and found incontinence and my urologist did CMG EMG.

The EMG they connect electrodes different pars of arms legs and pass a small electrical current across and read how much resistant there is. EEG they stick a needle in different places to get the readings from this they can tell which nerves are affected.

If I can remember correctly the urologist did an EMG and CMG. The EMG is similar to the one done by the neurologist did but in different places. The EMG they put a catheter into your bladder plus an elytroid and another in your rectum on top of your prostate a couple on your stomach. The CMG they start to fill you with sterile water until you feel it which you should feel it at around 250 to 350cc. in my case I did not feel anything at 1000cc of water she stopped the test. From all her readings she came up with what type of incontinence I have, flaccid bladder with retention.

I also had to self cath and kept a diary of intake and output. My average output was 1000 to 1500cc and one was 1700cc all way over the normal.
There are several tests that either a neurologist or urologist can run Sonogram, Cat scan, MRI and blood work.

I am Shure there are more but that was many years ago.

Lyle

You people are bringing back nasty memories of those fun tests. The neurology people did several tests including an EMG but only after I went through a battery of urology tests as well as a couple MRI's. My nerve damage is due to injuries suffered in an accident. I just don't feel any bladder urges nor can my bladder seem to retain urine like it should. It pretty much dribbles or releases small amounts of urine without warning. I also have considerable numbness in the upper leg areas and buttocks. The numbness seems to have spread in area over the past several years which concerns me. My primary doctor tells me I'm lucky to be walking considering the location and the severity of my injuries.