Urinary Urgency: life becoming intolerable

Hello, I wanted to ask a question about urinary urgency [I know the subject has been done to death here already]. I have a belated diagnosis of ALD [really AMN] based on raised VLCFA blood levels. I have also had a stroke [fully recovered] and other neurological damage [mystery illness that damaged muscles in right arm and leg]; more in my profile. The symptoms attributable to AMN are progressive loss of sensation in feet and legs.

I have also suffered from urinary urgency over this period, which coupled with unable to walk unaided leads to often not reaching the bathroom in time. I am not sure whether this is caused by AMN affecting the muscles controlling my bladder or some other illness. The timescale over which that this has appeared [years] argues against bladder infections, and the alternative is scary [prostate cancer]. I will raise this with my GP, but I wanted to ask if urinary urgency is common with AMN with my level of illness.

I looked into medicines to reduce urinary urgency, but they seem to have scary side-effects [oxybutynin etc]. Botox injections sound like an answer, but I have held off these for spasticity [muscle stiffness in arm] as the effects last months and are not reversible if there is a problem. Can you help? Local Drs have no experience of this rare illness.

Sorry this has been a bit long. Jack.

16 Replies

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  • Hi Jack,

    I'm 32 and have urinary and fecal incontinence from AMN since age 21. I have done 6 rounds of Botox, it was great. Just buys me some time to make it to the bathrooms that I hadn't had before. The other part of the equation for me has been self-catheterization. Life changing. Once I was on a good cathing schedule I really felt like I got part of my life back. I totally recognize that female catheterization is much easier than male but hope you'll consider it and see how it can get your body on a consistent schedule. Please feel free to email me at alsrgnt@gmail.com as I am quite knowledgeable in incontinence due to AMN!

    All the Best,

    Andrea

  • Hello Andrea,

    thanks for the reply. I did not realise that women could get AMN/ALD as young as you! I did once have a catheter fitted for a different [acute] illness, but I would find it too difficult and unnecessary at this stage. I would be interested to learn how well Botox did in reducing leakage [I see that it recently got NHS approval]; however, I think that your experiences will be different due to the prostrate in men.

    Best wishes,

    jack

  • Talk to your doctor about a medication. I take Oxybutynin.

    However, every human is different, and I can't give medical advice and get quite shy here.

    Dean

  • hello Dean, thanks i had heard of Oxybutynin. i will talk to my GP when i can get an appointment. i had read that oxy... has some strange side effects. anyway, best wishes, jack

  • I am a 42 year old male with AMN and highly recommend botox injections as a way to treat AMN related urinary issues. Now I generally urinate 5-6 times a day, which I think is great (especially considering that I drink about three cups of coffee a day). Pre-botox I would have days (without drinking coffee) that I would urinate 6 times before 10:00 a.m. I still can feel when I need to go, but it is not like before when my bladder would start spasming, possibly resulting in leakage. However I do need to use a catheter because the nerve controlling urination has been deadened (meaning that I cannot urinate without a catheter). I understand that the idea of using a catheter is very unappealing. However, I think that it is more than worth it given the upside.

  • thanks for the reply. life is too complicated. it sounds like the botox injections worked well for you. it is interesting that you mention spasms - i haven't noticed that in my case. i understand what you say about inability to urinate at all, but for me that was a short-lived non-AMN infection many years ago. i am not sure if i can expect all these things to happen to me in time. i do not know if i have late-onset AMN or slow onset AMN [if that makes sense]. i think catheters are a last resort. best wishes, jack

  • Hi Jack

    To answer your basic question - "is urinary urgency common with AMN with my level of illness?" - the answer is definitely yes. I say that as someone who has had AMN for 25+ years (I just turned 70). It just comes with the territory.

    I am really sorry you say that life is becoming intolerable due to the urinary problem. From the way you describe the level of urgency you experience, it doesn't sound that much different from mine or others I know. I have a leak - usually minor - most days. The issue is how to control it. There is the obvious way - such as not drinking tea or coffee before embarking on a trip by car or public transport. Then there's the way of going for a pee more often than actually needed. I assume you do all of this.

    You mention your worry about prostate cancer. It may be that you have what I have, which is an enlarged prostate, but one that is benign. The condition is called benign prostatic hyperplasia - (BPH). It;s quite common in older men. I have had this for many years and get it tested each year, along with a PSA test for cancer. The problem with an enlarged prostate is that it's yet another impediment to urinary flow. There is a procedure to zap the prostate by laser, shrinking it without removing it (I forget the name of it). The consultant I saw advised against this, mainly because with AMN he felt I would be less continent than I am at present. In other words, the prostate was preventing some of the easy leakage caused by having damaged nerves from AMN.

    I don't catheterise, although I have had instructions about this. My urine retention is not that much, so I decided that going more often was a price worth paying for not catheterising. My concern about the catheter is bladder infections, which are a heightened risk. You do need to get kidneys checked at least once a year - the eGFR test and U & E test done, but mine show no problems.

    Remember, although here we are all in some sense experts because we have AMN, we can only say what works for us. You have to work out a regime with your medical advisor.

    By the way, you don't say if you are UK based - I assume so. In London, Guy's Hospital has one of the best urinary clinics in the country. See guysandstthomas.nhs.uk/our-... You can always ask for a referral there from your GP.

    If you get a chance, do fill in a bit of your profile.

    Hope this helps. We can chat by phone if you would find that helpful. Send me a message on the message facility if so.

    Best wishes

    Chris

  • Hello Chris,

    thanks for the reply. I have worked out that minimal liquid intake reduces the frequency of accidents, but I have been developing a diet based the 5:2 calorie restriction [details on request], which involves a lot of frozen/fresh fruit on the days without restrictions. This is very healthy, and reduced my cholesterol from 5 to below 4 [I had previously had a stroke caused by cholesterol 8+]; however, recently this liquid intake led to many accidents [I am not so much talking of leakage as total loss]. I don't enjoy a “dry” diet and it is probably not good for my health in the long term.

    I am in windswept yorkshire [uk], but have no specialist medical support [since no longer having suspected MS]. My local GPs have to be told how to help me and I know the hospital registrar who diagnosed ALD used google. My chances of my visit the specialists in london are zero, so I have to rely on local GP support and forums such as HU.

    If my problem is related to the prostate rather than the associated muscles then that's when things scary. A while ago my GP said that PSA was not very useful [many false positives]. Prostate cancer is often detected when it is too late in this country. It seems that most attempts to fix these things [ie laser zapping] lead to other problems.

    I decided I would not pursue catheters and botox until absolutely necessary.

    When I was in hospital recovering from my stroke, I couldn't see very far into the future. These days I am faced with perhaps 1 or more decades with progressive disability and health.

    Sorry to burden you all with these things.

    Best wishes, jack

  • Hi Jack, I don't think reducing your fluid intake is good it will make the urine more concentrated and this can irritate the bladder, drinking lots of water is best, my bladder is worse than some on here, it has very high pressures causing problems with my kidneys but self catheterising releases the pressure and the kidneys are now good.

    B W Steve

  • hello Steve, thanks for the reply. i never thought i would one day be measuring my fluid intake and discussing in public! but i know it is now for me an issue. when i have cut down on fluid intake i haven't noticed any of the harmful effects you mention. i always pass my annual blood test with respect to liver and kidneys. i am not sure how AMN causes your bladder to suffer high pressures. is it urine retention [hence the dreaded catheters]?

    b w jack

  • Hi, Jack,

    It's not the retention I think it's the bladder spasming reacting against the spincter muscle? I've been using the catheters now for 2 1/2 years and I wouldn't want to be without them now! I still get bad days though. I currently use approx 6 -8 a day and on a bad day up to 12. The brand I use are Coloplast speedi compact catheters.

    BW Steve

  • hello Steve,

    at first i didn't know what you meant by "6-8" a day. i looked at the coloplast web site, and i still do not understand: when i was in hospital, the catheter consisted of what seemed to be a metre of tubing [i was very ill and may have been hallucinating] attached to a plastic bag and stayed on for 1 week. things can't have changed in 6 years.

    cheers, jack

  • Hi,

    They are single use catheters about a foot long, I urinate normally not to lose use of the muscle! then I use the catheter to release the retention and importantly the pressures.

  • hello,

    ok i see. the hospital would not have had the nursing cover to have used these or the trust of me to use them myself.

    cheers, jack

  • Hello Jack

    Thanks for explaining a bit more about your situation. To answer your question about posts being visible - yes we do know that. We made a decision to keep them visible a couple of years ago - see healthunlocked.com/amneasie... and then healthunlocked.com/amneasie... . We even had a poll about it! Remember , you can choose to make a post private if you wish.

    You have had a difficult journey with the various medical mis-diagnoses and and the lack of good medical resources. All things considered you are doing OK. But I am not sure why you say PSA is not worth doing. Yes, there can be false positives but PSA also works for many. I think it's worth doing every year. You should at least find out if you have BPH.

    I also suggest that you do demand referrals to somewhere from your GP. You could come to see a specialist at the National Hospital and/or also the urology clinic at Guy's. Don’t give up on the urology advice. If you want, I could try and find out the name of a consultant nearer to Leeds that you might visit. I am sure with some better advice you have some other options to try.

  • hello Chris,

    yes i remember the discussion about this at the time. i have no problems because i am careful, but i wonder if the member who tells me her email and name in a post realises that this info will be searchable with googlr in the future.

    yes, i see what you say abaout PSA, and i have just been dissolusioned by the way health experts treated my late parents, and the pathetic attempts to diagnose what is affecting me. so negative in someone so young [ha].

    i have been looking at the panel of neurologists in leeds [it is impracticlal for me to travel further], and haven't seen anyone who seems appropriate to ALD/AMN. athough a urologist appears to be what i need, the more pressing problem i face is the way AMN is affecting numbness and circulation in my feet and lower legs. this is similar to what diabetics suffer [legs drop off is no joke] i will have to talk with the more connected of my GPs to see if they can suggest someone. any names of DRs in leeds that you can suggest are most welcome.

    best wishes, jack

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