Okay, I DO NOT want to post about this, but I can't find answers anywhere else.
I am finding that I am having more urinary urgency with smaller and smaller amounts of urine. Could this be related to the CIDP?
I am a nurse, and usually have a bladder like a camel, but that is NOT the case, anymore.
Any insights into this from you more "experienced" CIDPers would be appreciated.
Aaron
I've had that problem for awhile. My neurologist won't even acknowledge that I've said I have a problem. I can go urinate 3 times in an hour and still feel like I have to go. When I leave my apartment, I am never far from a bathroom. I can go from having good streams to just trickles. I never had these problems prior to getting ill. You will sometimes have bowel problems too. I think it's just part of this wonderful world we live in called CIDP.
I started having urinary problems for awhile and have to where mens depends. I'm always using the bathroom. Now the guy who did my emg tried to explain to me how the disease effects the bladder but I really didn't understand. During the Never condition test there are two parts the needle and the shocking. Well they did the shocking in my pelvic area and measured that too. So this must not be uncommon. I was told with treatment it should go away. So I use depends and went to the baby department and found a fleece soft water proof barrier until I can start my treatments. I use to be embarrassed to tell anyone or talk about it but I figure why not tell what I have been told.
I suffer from total urinary incontinence and have to use full inco pads (what you in the US would call an adult diaper but we're british so we couldn't possibly call them that....stiff upper lip and all that) but I have an existing spinal cord injury, my neuro has told me that if it was a case of just having the injury or CIDP it probably wouldn't have been a problem but to have both has just compounded the nerve damage.
urinary incontinence is sometimes listed as a syptom of CIDP but it seems that amongst the medical community there is a reluctance to accept it or even acknowledge it I had to push my neurologist just to discuss it which really isn't a good situation to be in when your trying to understand your own condition.
Urge incontinence (needing to go and go NOW!!!) is probably the most common type of incontinence because of the delay in messages reaching the brain due to nerve problems.
That seems to be what I'm dealing with, Bill. I can be sitting at my desk then, all of a sudden, I have to go NOW!!!! And, it may be just a little or a normal amount. The amount doesn't change the urgency. I'll have to talk to my neuro about this.
Thanks, everyone, for your feedback on this!
bill2503 said:
I suffer from total urinary incontinence and have to use full inco pads (what you in the US would call an adult diaper but we're british so we couldn't possibly call them that....stiff upper lip and all that) but I have an existing spinal cord injury, my neuro has told me that if it was a case of just having the injury or CIDP it probably wouldn't have been a problem but to have both has just compounded the nerve damage.
urinary incontinence is sometimes listed as a syptom of CIDP but it seems that amongst the medical community there is a reluctance to accept it or even acknowledge it I had to push my neurologist just to discuss it which really isn't a good situation to be in when your trying to understand your own condition.
Urge incontinence (needing to go and go NOW!!!) is probably the most common type of incontinence because of the delay in messages reaching the brain due to nerve problems.
There's keegles for men. I just checked on webmed. Women learn this from pregnancy and csections. It works to strengthen muscles. I have had retention, which gives you the feeling you have to go when you don't really have to. When that happens I drink extra water and fight the urge to go. I think that also keeps the muscles strong.
I stayed up a bit last night and found Facebook has a page Living with CIDP and they list bladder control issues as one of the problems with CIDP. I sent them a message only because I don't really want to be to public on Facebook and I'll see if they answer me.
Solifenacin 5mg tablets; 1 per day for bladder control on prescription in U.K but maybe available over the counter elsewhere. Swallow whole, do not chew, may cause drowsiness etc.Works right away.
Mystery here re bladder control too but was supplied by my G.P
without too much information, I too have the same problem. Have had CIDP for 1 1/2 years and has been notiable, but no major dramas. I am nearly 60 years old. Cheers
“Nervous System Disorders” was listed as one of the causes of urinary hesitancy, when I was researching a related issue I am having. For me it’s more frequent urination with a slow stream that lacks force. Coupled with my balance problems, it seems to take forever to finish peeing as I stand there holding on to the towel rack to steady myself.
Well, I figured out what was causing the urgency, blood, etc...I passed a kidney stone! Never felt any pain from it, which is unusual. Usually, I am almost screaming in pain. I guess neuropathy is helpful in some cases, huh? Because, I'm telling you, that stone was HUGE!
Thanks, everyone, for your replies!!
I have C.I.D.P Lewis Sumner Syndrome. I live in Spain and the treatment is different here but although I have a prolapsed bladder I notice a while before I have an episode (Start loosing feeling and have pain and tingling) I need to pee more frequently and my bowel movements change. I have been told that when my body starts fighting it self it rejects the vitamins and minerals and then the kidneys go into overdrive hence the need to go immediately. Once I have the IVig treatment it goes back to normal. I also seem to get a bladder infection at the same time and have to take antibiotics. I have also found that I am allergic to some of the antibiotics. Im on steroids between treatments.
Six months after my symptoms started. I lost flow , urgency and frequency increased. I thought originally it was just aging. Then my scrotum swelled up in two days to the size of a mini basketball. My dr sent me in for a ct and I went to a urologist. The next day they split me open and drained an enormous amount of fluid from me. Know one had any idea. Shortly afterward I was put on a cystal n Celine as a chelation . After two months of repacking the incision site twice a day and 3.5 months of chelation the flow improved and urgency subsided. Go figure. Still no answers from the doctors.
I had urinary issues too back in 2010... I'm argentinian and that's one of the reasons they admitted me in hospital right away.
It turns out that I've always had urinary problems... when talking about it with friends that don't have CIDP they told me that they can feel when their bladders are being filled and when they have to pee and I don't. It happens all of the sudden.
I always use pads because of that... sometimes I pee a little before I get to the bathroom.... but in 2010 I would pee my pants or I would soil myself.
I have a really good neurologist :)
I had GBS in 2006. I'be done pretty well since but I do have problems with weak stream and having to go several times to empty bladder. A result of this is that I get bladder stones. This happens when urine stays in the bladder. I'm going in for surgery tomorrow to get them removed. They put you under and go in with a laser and blast the stones to bits and then flush them out. This is the second time in 3 years I'm having this done.
Ben bad the last few months. If I go out in the heat (I live in Florida) then I have to go (as in I pee myself) every 10 minutes even though there is very little urine in my bladder. I stay that way until I go to sleep. OK the next day until I get hot. OK if I stay indoors or at work.
After I recover from the sugary I should be fine (at least for another 2 years).
John Graham
The stones were removed on Monday. I'm starting to feel normal again. PSA was checked a couple of months ago and it is normal. I do have a slightly enlarged prostate. And yes - the urologist who removed the stones did do a prostrate exam. He said that the stones were causing my symptoms. We are going to monitor the prostate.
Initially the hospital diagnosed as a UTI but it became apparent that the antibiotics (Bactrum and then Cipro) were not making any difference. But 1/2 hour in heat would make the rest of my day very miserable.
Thanks for your suggestions but I think we have them covered at the moment,
John Graham
DazedandConfused said:
Man to man, have your PSA levels checked. You might be experiencing prostate problems.
Then again, though rare (again because guys usually don't get these), it could be a bladder or kidney infection, but then again it could be a kidney stone partially occluding the urethra or stuck in your bladder.
Sounds like time to check with your MD about a kidney and bladder ultrasound to rule-out stones, and for (sorry!) a PSA test and prostate exam.
Once ruled-out, then ask your neuro about CIDP-related causes...but personally, I'd rather have it be something that can be treated and cured, rather than CIDP-related nerve damage!
God bless.