www.incontinentsupport.org

I don`t know why but for two months now I have been fine and back to normal.I still think it is meds that caused it.I now take one blood pressure pill and that is all I am going to take.

Wink

Wink, I'm happy for you. I know that meds can change continence issues. For me, none of the usual urge incontinence drugs did anything for me, but gabapentin reduced the strong "electric shock" feeling I was having because of Diabetic Neuropathy. My legs are not doing well. I have little feeling in my feet and have gate issues that causes imbalance problems. But I've had incontinence issues for over 40 years (actually, I guess it is close to 50 now). I'm 61 next week and it is hard to remember a time that I didn't know I might have an accident at any time. I have asked my neurologist if I had autonomic neuropathy. He has done some tests, but not extensive ones. He has done nerve conductivity tests and my nerves don't work like they should. But I don't show any heart or gastro issues. I don't get dizzy when I stand up. So of the 5 major autonomic neuropathy issues, I have 2. The urologist has done bladder tests and found that I have a abnormal sphincter. I also tend to retain urine and my bladder is large. So I have signs of neurogenic bladder. But that doesn't explain my bowel issues or the fact that I can have periods of control and then suddenly completely lose it for days, weeks and infrequently months. So I have no clue if I have autonomic neuropathy or not. Using Lyle's analogy, my wires short circuit at times, but then there are times that the insulation comes back. That makes no sense to me or any of my doctors.

Dangoch

The Malian sheath that protects the nerve once destroyed it doesn’t come back or it may make a crude attempt to but it takes years.
But when my neuropathy first started that is exactly what was happening to me. A spot would get numb and the strength in that area would not be as strong then it would come back but it never stayed.
When I first started having problems with incontinence it always thought it was my back causing it and so did the doctors. I raced motorcycles pro and like every other nut out on the track I had back injuries. I have several budge disks in my back and neck and it was believed the disk would move hitting a nerve causing incontinence.
Well 50yrs ago they did not have the means or knowledge to determined neuropathy it was all a good guess of the doctor.
Here is a couple of links

http://www.livestrong.com/article/14867 ... ve-damage/

http://www.mayoclinic.com/health/medical/IM01480

all I did is use goggle and type in “myelin sheath nerves” and it brings up a lot of info.

Over all neuropathy can causes incontinence in less than 5% of the people that have neuropathy and 5% of people may develop incontinence.

If you do have neuropathy of this type why doesn’t your doctor get you on something to try and fight it. It is better to try and stop the myelin from being destroyed.
There are many treatments from drugs to chemo to Plasmapheresis to IVIg so it is treatable it may not stop it but in my case it has slowed it down.
I receive IVIg I have it every three weeks over four days I start my first treatments today for this session it takes 4hrs to complete.
I do have to say the cost of these treatments is well let’s just say I could buy a new car every three weeks.

Wink: I am happy for you, you have done what few have I hope you stay healthy that is something I will probably die fight. I go to so many doctors and hospitals to fight incontinence and neuropathy unbelievable.

I would not wish neuropathy on anyone it is a nasty problem

2lyle

Hi Lyle

My neuropathy is from diabetes. There is a natural way to avoid diabetic neuropathy, keep blood sugars down. I take meds and insulin and it does keep it in check most of the time. There are always unexplained spikes, like a few pieces of pizza makes my blood sugar go up, but a few pieces of bread is ok. There are ways to avoid most of it, but it leads to a boring life. I do my best to keep things in check and there are no correlations between blood sugar increase and a incontinence cycle for me. As best as I can tell, there is no rhyme or reason to the cycles. I'm sure the easy way is to just wear diapers 24/7 and accept it. I did that for a very long time. But once I started gabapentin I seemed to regain something, less spasms. I still have no idea how full my bladder is. I can go for 12 hours without a void but when I'm having a wet cycle, seems my bladder doesn't accept any capacity at all.

My biggest problem is getting Drs. to look further. They see diabetes and incontinence and they say, "stop, no more reason to look further". Well, I want to look further. I went from wearing diapers for 5 years 24/7 to wearing less than half the time just by taking gabapentin. I have tried all the bladder drugs and they don't do anything except make me really dry mouth and headaches. Dry mouth for diabetics is not good. Can't tell if it is a sign of high blood sugars or something else. But I'd sure like to do a little more testing to see why I can go around over half the time with normal underwear and suddenly I have no control. It's like a switch, although I think the actual difference between continence and incontinence is much smaller than that. If I didn't fight to retain continence, I'd be back in diapers 24/7 again. I wants answers, but can't get Drs. to move. The neurologist wants to give me different pills, the urologist wants to implant a new sphincter (and ED tubes). I've begged to get more diagnostic tests, but either they don't want to, the diagnostic center doesn't want to or the insurance doesn't want to, I don't know if it is some or all of those reasons or something else. All the Drs. seem to say is diabetes and incontinence, of course, case closed. But for me I'd like to know when I go to bed that I'll wake up dry, whether by my means or a diaper. I don't wear diapers to bed, in fact I don't go to bed. I sleep on a lounge chair because I hate waking my wife in the middle of the night with the need to change sheets. Been there, done that. 95% of wet cycles start with night wetting but I never know ahead of time. I risk going out without a diaper and almost every time, no problem. But when I'm having control problems, I don't dare leave house without a diaper. It is maddening

So you see, I am only trying to find out why this is going on. It doesn't seem like much to ask. But I can't get any Drs. to go the extra mile. I sure don't have the funds to go to a specialty center like Mayo Clinic or Stanford Center. I'm working on getting my neurologist to send me there. I see him this week and I hope that when I tell him the latest pills don't help he will decide to finally send me to Stanford. I really don't care what the answer is. They can tell me that I will have these same cycles the rest of my life or that it will get worse and I'll eventually need protection 24/7 or here is the pill and you can go about living without diapers. I'd like the last answer but I really don't care. I'd just like to know that I got the best answer that I can get and the result is whatever it is. I'd just like to know. It does seem to be getting worse over years, if you ignore the time where I wore 24/7. Like I said, there is a small difference between continence and incontinence, at times I think it is self confidence more than anything. If I don't risk going without diapers and trying to stay dry, I can go for years wearing a diaper, I've been there too.

Long post, but it has been 40 years that I've been going through this crap (and at times I mean crap). Sorry to bore everyone, I get worked up over this. I do believe I'm getting good Dr care, I'd just like them to look for a better answer than the diabetes/incontinence connection, case closed.

Dangoch

I don’t know how much different there is between CIDP ( Chronic Inflammatory Demyelinating Polyneuropathy ) and Diabetic Neuropathy but I do know IVIg the treatments I receive is used on both types. There are about 50 different types of neuropathy but not all are serious and few cause internal problems like incontinence.
The type of neuropathy I have is CIDP along with Autonomic Neuropathy and the autonomic neuropathy is what is causing my incontinence. I also have Hypoglycemia the opposite of being a diabetic.
I do know diabetic neuropathy can cause serious problems.

Without getting this to long >> if I did not keep going to doctors who sent me to other doctors and finally my neurologist and urologist agree I have a flaccid bladder with retention. If I would not have kept looking this hard I probably would not be here today as the urine was backing up into my kidneys.
Autonomic neuropathy can cause renal failure.

Never stop looking for the base problem.
Man do I hate all of this nothing like being normal.

2lyle

Hi Lyle

I understand where you are coming from. I live with constant pain in my limbs caused by the diabetic neuropathy. It is strange, I have pain in places, but when I try to see if there is feeling there, I can't feel anything. My toes aren't numb, they just have no feeling and they ache almost constantly. My suspicion is the same goes for my bladder. I can't really explain what I sense when I think it is time to urinate, there is no feeling, it is a hint or something. Sometimes, it is a false alarm, sometimes I don't get an alarm. It is very frustrating because I don't know from one moment to another if I will stay dry or have a problem. I went to my neurologist this morning and he has nothing to suggest. We all know there is a neurologic issue and it is clear there is limited feeling down there, if any, but he can't figure out what new test that might be useful to tell us more. So I just keep coming back every 6 months, without any forward progress. That is what is the most frustrating, no progress. I agree that we must keep trying, but getting Drs. to go past their preconceived notions is hard. The main topic today was my blood sugars. I know managing my BG levels is critical to keeping what ever feeling I have, but I go year after year with no more info than I've had for years now. I guess it is something that we have to live with. But as you said Lyle, this is far from normal and it sucks.

Dangoch

Everything you are trying to say about neuropathy I know exactly how it feels and what you are saying.
It is so difficult trying to tell a doctor most don’t have a clue and won’t unless they get the disease and see for them self’s.

My urologist ran many test and the one that showed the most is a urodynamic pressure test with CMG EMG Urology Test. This test he can tell you if the massage going from the bladder to the brain and back to the bladder is normal or not mine is dead.
For many years when I would go there was no warning it just started to flow but it would stop as fast as it got started.
This test showed my bladder never sent the message so the brain never sent the massage back to go. I was diagnosed with a flaccid bladder with sever retention and other way to say it my bladder is underactive and when it is so full it is going to burst then urine will leak out fast then when it gets about half empty it would shout off.

My neuropathy seams to go in steps. Last September from out of the blue the pain increased I felt sick something like the flu everything bothered me. My feet and hands got worse and so much more happened.
This was a neuropathy flare-up and it hasn’t settled down completely yet.
In this time I also had some hemorrhoids surgery. I had this surgery twice before with no problems but this time it was bad.

So neuropathy takes on many forms.

The closes type of neuropathy that is like mine if Guillain Barre or (GBS) but there is a difference between them.

Do you take any pain medications?

I am on Fentanyl, Tylenol #3, Valium and Celebrex man I hate narcotics.
All these drugs and I still have pain.

Fighting incontinence is simple compared to fighting Neuropathy no matter how hard one tries fighting neuropathy it is up hill in all directions and the top is never in sight.

2lyle

Hi Lyle

The main difference between incon and neuropathy is incon you can either sit on a toilet forever or wear some protection and there is mostly no pain. Neuropathy is constant pain. I've gone through several pain regiments. My current scheme is gabapentin and cymbalta. Tried Lyrica, but that didn't seem to make any difference. I took Darvocet for years until the FDA banned it. I thought I'd need to move to a stronger pain pill like Valium, but amazingly, when I stopped Darvocet, the pain was mostly manageable. There was a time that if I didn't take darvocet every 6 hours, I'd be in considerable pain. It is possible that the gabapentin and cymbalta have made my pain tolerable. I really feel that the gabapentin made my bladder stop "bouncing". My bladder once was so overactive that I could feel the contractions almost constantly. Now I don't feel anything. Now it is possible that my neuropathy has just caused all feeling down there to just go away. I never noticed any correlation between spasms and incon, but who knows. Now my bladder is likely under active. It gets extremely full and I have no way of knowing that I'm full unless it starts leaking. I'm glad that my neuropathy pain is manageable without extreme narcotics. I've read that some people can only live if they get morphine on a daily basis. That would be awful. I hope I never get there.

It never occurred to me that there are neuropathy flareups. That might begin to explain why I can go from bladder retention to bladder level intolerance. When I wet, it usually is low to moderate, but when I'm having retention, I seems to go forever, not knowing I'm full and then I feel urine running down my leg. The weird thing is that my neuropathy is such that sometimes it feels like something liquid is running down my leg and I'm totally dry. And then there are times that I don't feel anything running down my leg until I'm walking in urine puddles. So it is very weird these nerves. I don't notice any pattern when incon happens vs. having control as far as more pain from my neuropathy, but maybe that is the issue, I've masked the pain and I can't feel any difference. Who knows. The Drs. don't seem to be very curious. I suspect insurance coverage has something to do with it. A year ago I went to many specialists to make sure there was no serious issues. The only thing found was a patch of skin cancer, a bladder stone and a screwed up sphincter, none of which were life threatening. Got the skin cancer removed, but the bladder issues are still there. My urologist would remove the stone and put in an artificial sphincter and ED fixes all at the same time. I decided I didn't want that surgery. So that was all my urologist could do for me.

Well, we've probably beaten this issue to death. I think we've been sharing our fun incon adventures for many years on this and other boards. Nice reconnecting again.

Dan

I feel for anyone with a neuropathy. I myself have been diagnosed with a mild peripheral neuropathy. Its not bad. I get occasional tingling in my right hand and arm and I occasionally get pain in my feet. Its not constant. I was however worked up for an autonomic neuropathy. I have early satiety, chronic diarrhea, and bladder and bowel incontinence. It is not retention. I get spasms out both ends and it causes me to wet and soil myself at random. It is really frustrating. I worked with two different neurologists who both said my incontinence and diarrhea are not from auto neuropathy. They both were M.D. and Ph.D.'s. Very bright men. They believe that my problems are from another cause. That cause is my psych meds. My psych meds cause my bladder and bowel to spasm. The early satiety is attributed to my ADD med. It causes loss of appetite. I was actually going to neurology as a last step. I have been to my primary doc, uro doc, gastro doc, and now neuro. They all say the same thing. My psych meds are making me leak. Quite frustrating. The meds that keep me well are making me sick.

I will update what is going on. I have not been on in a long time but here go`s. So far I have been diagnosed with neuropathy did not say or I did not understand what Kind but I do have or have had all most all the symptoms of Autononic plus Peripheral Neuropathy. Right now I load up on potassium and I take 2 to 3 5MG oxycodone a day from 12 to 8 hours apart. I take 200 Mg Potassium and one 5mm oxycodone at the same time. It has got me down to just a small leak that just wearing some underwear for drips will work most of the time all day. If I work and get hot it seems to get worse but still not to the point of pee running down my legs or any thing. This has worked for all most a year now.