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urinary

Just wondering if anyone has had urinary issues with their early stage MS.  for instance I don't feel my full bladderany times.  Until its too late!
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Avatar universal
I had bladder issues for years but, for the most part, feel that my situation is currently under control. When I look back, it seems likely that my bladder problems were the first sign of my MS, though this was years before my diagnosis.  In those early days, I experienced frequency and often felt as though I had a UTI. While I did seem to be prone to infections, just as often my cultures were negative, despite feeling symptomatic. I also began experiencing hesitancy which made me feel tense and self-conscious in public restrooms, which in turn added to the stress & hesitancy …. well, you get the idea.

Fast forward some years.  I had a wonderful urologist who made me understand that urine retention was the main source of my UTIs and who gently suggested that I consider self-cathing as a means to deal with this. It took me quite awhile to accept this course of action, but ultimately, I gave it a try. This was more than 15 years ago and I am extremely happy that I did this.  It took me awhile to figure out the logistics of self-cathing in all restroom situations (work, friends' houses, restaurants, airports, foreign countries!), but it’s like second nature to me now.  Since starting to self-cath, I’ve had few UTIs over the years.

In more recent years, I’ve moved on to a urologist who has experience with MS patients. From him, I’ve learned that people with MS often have detrusor sphincter dysynergia which causes the sphincter muscle to contract rather than relax.  So, my old hesitancy wasn’t all in my head!  It was such a relief to learn that I was not crazy or imagining things!  I also learned that some of the symptoms I had experienced over the years (and still experience occasionally) are bladder spasms not UTIs.  (Of course, I always check to make sure it’s not a UTI.) During one period when these spasms were particularly bothersome, my urologist suggested Botox injections which he does in his office & which he says takes 20-30 minutes.  After giving this some thought, I decided not to pursue this at this time.  Fortunately, I’ve gone a long time without experiencing those spasms again.  

I would just like to encourage anyone whose doctor recommends self-cathing to try it, despite any uneasiness.  This turned out to be a wonderful solution for me.  It has allowed me to feel like a normal person again, in control of my life, rather than someone being controlled by my bladder.
Helpful - 1
Avatar universal
I've had bladder issues since pre-teens and this was my first symptom of MS.  It is very common to have a variety of bladder problems.

I've had Inter-Stim Implant surgery and it has helped with the sudden urge problem but I still have to use Depends because I continue having problems with the bladder and at times,  loss of bowel control.  I'm sorry you have bladder problems and hope you can find some relief
Helpful - 1
1 Comments
Sane here, urinary crap was my 1st symptom as a teen. Fun times
695104 tn?1442193588
I appreciate the info, even tho I try yo research a lot about stuff, I still feel I learn new things all the time, so keep on posting!

I think the only thing worse than the bladder issues for my hubby are the bowel issues. I won't go into it all, since I have a prior post where I asked for input.
It's just heartbreaking to see him going thru this crap (pardon me, but it's what I feel, and I guess my choice of descriptive word is spot on..)
He can be just walking along, and there it is. No cramping, no sensation at all until it happens. I know it's humiliating for him. He and I use humor a lot, it's what gets us thru...
After one particularly bad day, I told him if he wanted new underwear and pants he could've just told me...been easier and all...that got an rye roll and grin from him.
Another time I told him I had bought him some disposable undies..he replied, "These days all of my underwear is disposable!". That cracked me up, a much needed laugh for he and I both.
I try to be strong for him, but I do have my tearful and angry moments, angry that he has to go thru this, angry this darn MS exists, angry I feel helpless...emotions I know you all relate to.
Sorry for the lil rant.

Regards all,
C
Helpful - 1
Avatar universal
Thank you all for your advice.  I'm happy to report that I'm now getting proper treatment for symptoms
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Avatar universal
I also want to mention that there are physical therapists who specialize in pelvic and bladder issues.  A urologist could likely refer you to one. Although I knew up front that physical therapy for my bladder would not eliminate my need to self-cath, I found it very useful to schedule a few appointments with such a therapist.  For those with less severe bladder issues, perhaps physical therapy could turn out even more positive results.
Helpful - 0
1831849 tn?1383228392
"experiencing hesitancy which made me feel tense and self-conscious in public restrooms, which in turn added to the stress & hesitancy …. well, you get the idea. "

Yes, I do :-) One of my favorite vicious cycles! It's always an adventure at intermission at the theater, or at a football game, or ...

There is some evidence that Flomax (Tamsulosin) works to help in women as well as men. I take .8mg/day and it makes a big difference.

Kyle
Helpful - 0
Avatar universal
When I was first tested by a uro-gyno, they were amazed to cath about 35 ounces from me. Huge indeed, and lots of other things were wrong with my ability to perform what seems like the simplest of processes. Turns out it's very complex, with neurological firings having to occur everywhere from the brain to the bladder, and in the right sequence. I seemed to have several snafus along these lines.

Had to self-cath for a few months (maybe while my bladder shrank, who knows), and in that time I had a couple of infections. So easy to get in these circumstances. Ultimately, though, things righted themselves pretty well. Not to say I never have problems, but they've been of the 'quick, get there fast!' variety, which has been sometimes slightly too late, and on a couple of occasion (in public, yet) losing it totally with no warning.

Mostly, though, the situation is pretty normal now. I'm way more aware of taking care of things promptly and pre-emptively (!), and it's been well over a year since I've had any disasters, in an overall time frame of at least 6 years. This could be an example of a lesion or lesions healing reasonably well but not perfectly. That does happen, thank God.

I'd say urinary trouble is right up there among the worst manifestations of MS, because it can make out lives extremely dysfunctional. Routine infections like mine can become almost constant and very serious. Fortunately there are treatments, though finding the right one or the right combo can be tricky. More recently, some people, including some here, have been helped by injections of Botox into the bladder walls. This is a serious procedure, done in an OR, so it's not something to fit into a day of shopping or something. But it does work for many folks.

Sorry to repeat what our old-timers and many other regulars already know, but since we also have here many who are new to MS, it seemed like the right time to mention it again. Quix gives a great explanation of all the mechanics, BTW, in our Health Pages, for those wanting more info.

And finally, these issues can occur almost anytime in the MS symptom pantheon of hits. It's rarely the first one, but it certainly could be.

ess


Helpful - 0
1 Comments
A huge kidney stone was lodged in my ureter at age 17, had to have ER surgery.  It was my 1st symptom and of course the "doctors" didn't even think of a nerve disease. They are so dumb.
1831849 tn?1383228392
I have read, in unscientific sites, that Flomax (Tamsulosin) worked for women as well. Glad to hear it From the source :-)

Kyle
Helpful - 0
695104 tn?1442193588
Not feeling his bladder was full until it was too late was one of the 1st symptoms my hubby had...tho we didn't associate it with the MS until after his diagnosis.
At the time, we just figured it could've been him being over 40  and maybe a prostate issue.

Another bladder "thing" for him is after he had a CT scan, the tech commented hubby had a "huge bladder". Again, we knew he seemed to not have to urinate that often, especially considering all the water he drinks...but when he did go, he seemed to go forever..it was kind of a joke for us, my IC bladder is so small, the exact opposite of his...

Looking back, there are several symptoms he had that we now see as part of the MS. But at the times they happened, and the somewhat sporadic nature didn't "click" for us then.

Regards,
C
Helpful - 0
5466288 tn?1410485185
Kyle,
My visiting physician was very surprised when he met me for the first time! ;)
Before he came he already had the list of meds I'm on,and Tamsulosin (generic of Flomax) was on the list,so he was expecting a man to open the door! (chuckle!) He was a urologist for 30 yrs though,so once I started talking about all my bladder issues,the Flomax was understandable.I tried self-cathing;it just didn't work out.

toughchick,
  I'm not diagnosed with MS;although my urologist has said he feels it should be ruled out.
  My bladder issues started with urine retention.Then when I'd go to the restroom,the hesitancy started.In time I also started feeling urgency.Even so,when I get to the restroom,the hesitancy problem is still there at times.
Helpful - 0
Avatar universal
A big OOPS. 3 to 1.
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Avatar universal
Really, though, virtually every MS issue mostly occurs in women, or happens to women, because women MSers outnumber men by nearly 3 to 11.

ess
Helpful - 0
803451 tn?1390083422
As others have said - this is a huge problem with MS.  Frequency and retention are a result of nerve damage from one or more MS lesions.

I noticed it when my inner thighs were raw from the urine degrading the skin.  

Decades later, I use a cough while I am voiding to empty my bladder.  It produces pressure in just the right muscles.  It works abt. 90% of the time.  

The urinary frequency which comes and goes in me is taken care of by a med.  I never take that med unless symptoms arise.  Being on meds all the time is debilitating in and of itself so I try to limit things for my own good.  

I always find it very interesting that most of the people who have the hesitant diagnosis of MS - i.e. Poppy's statement that every thinks it's MS but noone will commit to - most of these people are women!  I believe this should be looked into by NARCOMS.  I do not think it matters if the doc is male or female.  I do think it should be addressed before it does more emotional damage to one more person going through the diagnostic workup for MS.
Helpful - 0
1831849 tn?1383228392
Hi TC- Welcome to our chat fest!

I agree with Sarah, that urinary issues are not necessarily limited to early MS. My urinary issues have been around for years, long before I knew I had MS and they are on my list of everyday MS symptoms.

My issue is hesitancy. I can feel like I need to urinate but am unable to do so. It can take a while for me to start, and once I do I often don't empty my bladder completely.

I manage my issues by taking Flomax, a drug intended to treat enlarged prostate. There is nothing wrong with my prostate, but MS makes my body think there is.

Thanks for joining the group :-)
Kyle
Helpful - 0
4907540 tn?1361976855
I have not been DX with MS but have transverse Mylitis with the possibility of developing MS later on in life..

I have been suffering with frequent trips to the ladies some times really desperate to go and it seems to be getting worse. so i can understand how frustrating it can be.

I have a neuro appointment next week for a follow up regarding MRI and blood tests.. so i'm hoping for more answers..
Hang in there and hope you manage to work things through..

Kerry x
Helpful - 0
4943237 tn?1428991095
Urinary issues was the first thing that showed up with me - four trips to the little room in the night and umpteen trips in the day.  It went on for about eight months, until I had a major flare up (of what everyone thinks is MS, but no one will yet commit to) then settled completely.  It now only comes back when I have another flare up.  

Poppy
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Avatar universal
Laura is right but I don't think it applies only to early MS.  Mine did not show up until years later.  They can be irritating to say the least and there are some very good drugs, but if you are not getting the warning, you definitely need to see a urologist about it!
Helpful - 0
572651 tn?1530999357
Bladder problems are very common with MS.  The act of urinating is very complex and takes a variety of signals to do it right, and completely,  Urinary retention or other problems usually indicate spinal lesions, that are interferring with the signals.  

There are ways to help out with this problem -be sure to talk to your doctor(s) about treating your problems.  best, Laura
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