Bladder problems

Hi my name is Pat. I,m 55 .I,ve had this disease for 25 years. My younger brother had it worse and died in 96. I been losing weight and struggling more than normal. Seen a doc and my kidneys were backed up. They put a cath in me thursday and waiting to see a Urologist. They gave me some flomax but it didn't agree with my body. Almost passed out. I thought i was pissing enough but guess not. I know these doctors don,t know shit about this disease. My pissing has got bad the last 2 years I can haedly feel that strong urge I used to get. Anyone know of some sort of Med to take to help rid empty the bladder more. I read about the implant. Don,t really want that. /I know of an older AMN guy that caths. Any help would be appreaciated. I,m still somewhat active. Workout with free weights and stationary bike now. Have 2 boats and fish the ocean. It,s getting harder thought. Pat

11 Replies

  • 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.

  • 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


  • 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

  • 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


  • 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

  • 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, 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

  • 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


  • Thanks Steve for all the information.

    all the best Pat

  • 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.

  • I am a 44 year old male with AMN. I use a wheelchair and only have a very limited ability to stand/walk. On this and other message boards I have recommended having botox injections to calm an overactive bladder. Prior to the injections I went to the bathroom numerous times. I remember counting as many as 10 trips before 10:00 am. When I used to swim I might have to get out of the pool two times to go to the bathroom. This was after going to the bathroom before swimming and was in addition to going to the bathroom after swimming. A three hour car trip might include three trips to the bathroom and this is without drinking anything. Obviously, this situation was a big drag on my quality of life.

    A doctor suggested botox injections and the reviews that I read were great. Thus, approximately three years ago, I had my first injections. Things seemed to go great. I had to cath (something that I had not done before), but I was only going to the bathroom 5-6 times day. This was a very significant improvement, thus my prior posts.

    This is a follow up to my prior post about Botox for the bladder. This past May I had my fourth injection. This time I did 300 units because the 200 units from my last injection did not seem as effective. Apparently, that was a big mistake. The first thing that I noticed was that my strength in the weight room decreased drastically. An exercise that I used to be able to do 10-12 times (i.e. bench press) I could only do six times. Now (four weeks out), I can only do that exercise one time. This is very alarming to me. Other than the botox, nothing in my life changed. I have continued to work out, but I am scary weak. I find this alarming because if my muscles were made so weak other things in my body must have suffered the same effect.

    More alarming than my muscle weakness is the fact that (sorry for being so explicit) my bowels have completely stopped. That is, poop will not come out of me naturally now and I have had to resort to laxatives. I always had bowel problems, but now things are much worse. Actually, when I think about my bowel problems is seems that they started getting worse after my first injection, but I never made the connection.

    I felt compelled to make this post given my previous positive comments about botox. I am hopeful that the botox will wear off and things will return to “AMN normal,” which we all know is not normal. However, for the time being things are more difficult and I generally just feel crappy.

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