Bladder problems

10 comments

mariagno

19 Nov 2012

God bless you and i so hope you can find some help. I cannot give much guidance regarding not being able to go since I have the opposite issue.

But when I have has trouble finding doctors that don't know anything about AMN (which is most of the time), I fall back on Multiple Sclerosis, or other paralyzing conditions and then hunt doctors that way. Here in Dallas, there are many different specialization's that treat MS patients.

So find a urologist who has experience treating MS patients. They can help.

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COwithAMN AMN Easier

19 Nov 2012

Hi Pat

Thanks for getting in touch. You don't say where you live but I am guessing it's somewhere in the US. You are right that the average doctor doesn't know much about AMN so you need to get close to the few that do. Mike who replied to you above knows a lot about the situation in the US. I am in the U.K. so my experience is different. As he says, MS doctors can be a start.

It may help you to ill in your location details - just say which city or region you are in. This may help you find other people on AMN Easier who are near to you.

Have you been in touch with StopALD and also the United Leukodystrophy Foundation in the US who may be able to help with medical contacts.

The problems you are experiencing with urination are what most of us learn to deal with. So you are not alone. It's really important to keep your kidneys in good shape as urine retention can cause problems there.

Good that you are working out still. I am 69 and still active and go to gym and I believe all this helps.

With Best wishes

Chris

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Pcutsor

19 Nov 2012

Thanks for the responses. I live in California, westcoast. Have an appointment a Kaiser tomorrow. My mother has been to the ULF conferences for many years and has contacts with some of the professionals. Thanks Pat

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StevenSims

22 Nov 2012

Hi, I'm a 36 year old man, I suffer with my bladder, my Urologist took some blood and told me that my kidneys are not good and he sent me for a Urodynamics test, this showed very high pressure's in my bladder (it was off the chart!) and told me unless I catheterise myself at least 4 times a day I will have kidney failure, this was April 2011 I've just had bloods taken and they are now normal, I'm averaging about 8 times a day now and I wouldn't be without them now! I use Coloplast Speedy Self cathereters. I think it is very important for all AMNers to see a Urologist to have their U&E's checked.

Best wishes

Steve

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Pcutsor

23 Nov 2012

Hi Steven, I,m in the same boat. My bladder was disfunutional for 24 years then it got worse the last 2. I was over flow pissing. Didn't know it but finially my kidneys backed up. I have been struggling hard tyring to do my normal activities. Lots of depression and wanting to cash out. Well I,m comming back and starting to feell way better. After a week my kiney labs are comming back. I think they will get back to narmal 2 years ago they were normal. I still have a cath in me. They were going to pull it last week and make me start cathing. The whole thing was a bit over wealming for me so I have it in until next WEd. I have to watch a movie to learn how to do this. Seems like I make a cup of piss every 3 hrs. and at night I get 600 cc. I have to figure out how many times I have to cath. They don,t want no more than 2 cups in my bladder now to keep the back pressure off the kidneys. Does it get easier to do this? haven,t experenced it yet but not long. Keep in touch . Pat Cuts@jps.net

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StevenSims

23 Nov 2012

Hi, It's not nice at first but you'll get used to it, every time I need the toilet I urinate normally and then catheretise the retention approx 100 - 150ml? and it release's the pressure, sometimes I cover the end of the cathereter and the pressure is like opening a bottle of pop!
I also do a extra one if I'm going somewhere and bedtime, you will need to use hand gel as there is a big risk of bladder infection's. I've had a couple and it's not good with my Addison's! I also take (Trospium) Regerin xl once a day.

All the best

Steve

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Pcutsor

23 Nov 2012

Steve, You mean hand sanitizing gel to keep your hand clean? What is the Trospium for? I don,t have the addision problem so far. Do you still get the urge to pee in between the caths? Pat

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StevenSims

24 Nov 2012

Hi Pat, yes sanitizing gel, I use wipes as well but there is bacteria in the air so there is still a risk of infection? the Trospium is to stop the bladder spasm's, I do get urgency sometimes but nothing like before using the catheters, I've gone from going up to 16 times a day to about 6 to 8 times.

All the best

Steve

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Pcutsor

24 Nov 2012

Thanks Steve for all the information.
all the best Pat

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anonymous

29 Nov 2012

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anonymous

30 Nov 2012

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anonymous

2 Dec 2012

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cdp71

25 Feb 2013

I am 41 and have AMN. One of my constant complaints was that I always had to go to the bathroom. Some days I would go seven times before 10:00 a.m. If I really needed to go, my bladder would spasm, resulting in leaking. As a result, I always had to be conscious of where the bathroom was.

This all changed eight months ago when I received a botox injection. The botox works to deaden the nerves that would spasm and tell me that I always needed to go to the bathroom. I still know when I need to go. It is just that the urge is not as immediate. The only downside is that I have to use a catheter. However, now I only go to the bathroom 5-6 times a day. Therefore, I think that the trade-off is well worth it. I highly recommend botox injections as a way to combat AMN related bladder issues.

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