Help with Urinary Issues....

Hello all!  I was wondering if I could get some advice.  I have one brain and one spinal cord lesion and fairly symptom free currently aside from the constant twitching throughout my body and the CONSTANT urge to pee!!!  I have had no incontinence but the urge is always there when there is a flare up.  I will ususally go about 2-3 weeks being fine and then comes a flare up that causes the problems:(  My neuro pretty much dismissed it as a non-issue.  Now after looking inside my bladder and not seeing any abnormalities, my urologist prescribed Vesicare and sent me on my way.  This would all be great except Vesicare doesn't do a darn bit of good.  Does any of this sound familiar to any of you?  This urge to pee is driving my CRAZY!!!!  All advice is welcome!!!!

[JJJ77]

BTW, if anyone happens to know a good MS neurologist in Columbus, I would be interested in knowing who it is.  Never hurts to get a second opinion right???  Thanks!!

[Bob368]

I'm sorry for what your going through. I still have bladder and urinary tract issues. Mainly pain and the urge to go, but when I do go it's not very much. There was a time when I was in so much pain it was unbearable. The urologist ran every test possible. The CT scan, ultrasound and all other tests came back normal. It was the MS and he said there wasn't much he could do for me. As time went by the pain subsided. I still deal with bouts of pain just not as severe. When I have to go I get there and I find out that I really didn't have to go that much? I don't know. I live with it.

I don't know if this helps, but your not alone and there are people that are here for you!!!



  

[Lulu54]

JJJ- I know a GREAT neuro in Columbus and sent you a PM about the neurologist I see.  If you really want a second opinion, I don't hesitate to give you this recommendation.  

I 'm in disbelief that your neuro isn't interested in helping you with the urinary urge problem.  This is most definitely associated with your MS.  Vesicare is not going to solve this problem.

be well,
L

[JJJ77]

OMG..thank you so very much Lulu and Bob!!!  All of you are always so helpful.  My neuro is at the Cleveland Clinic and while I really like her, she seems a bit dismissive of things that, as a patient, I think should get some attention. However, I get the feeling from Bob's message that there probably isn't much that can be done but i would still feel better if it wasn't shrugged off like it is no big deal.  As always, thank you so very very much!!!!  Hugs-Jess

[Udkas]

Hi there,
I can't offer any advice but I do experience similar problems.  I am sorry your Neuro dismissed you, this must be frustrating.  Does your MS Centre have an incontinence nurse there?  Mine does and I have been offered to see the nurse there to help with strategies.  Sometimes the neuro's are so busy that really they don't have time to spend hours on this but they should refer you to some help, I would think most MS centres or Societies have help with this, ours has a whole team just devoted to care and help with issues like DMD, bladder incontinence etc.

My Neuro has just ordered for me to go to a Urologist.  I was wondering what type of testing they might do and if it hurts? (sorry) thinking of myself here.

Another recommendation is to click up on the icon on the right hand side of this page and go to the Health Pages (Quix) a female Dr who has MS and who has also suffered some bladder issues has a whole section devoted to this type of thing, it is fantastic reading.

You are not alone, bladder issues are common with MS and with other neurological diseases and even without MS...lol.  I have a neurological problem, but my neuro does not think my problem at present is neurological!

Hope you get some help, if all else fails buy pads, not so flattering but that is what I have been doing of late... they have some good brands available now.

Cheers,
Udkas

[Ufrustrated2]

my local neuro dismissed it the other day. this is the third time i've brought it up. i have the urge feeling to go but don't have to go or so it seems. for quite a number of years my bladder doesn't completely empty do i have the drip. i just put tissue in my underwear. i know, sounds odd, and trust me, to me it is too. what else was i supposed to do.

the VA uro tested it and said all was normal. don't forget this is the VA that won't update my normal viewable records so the uro doesn't see i have this demyelinating thing. not that that would make a difference to the VA doctors.

they gave me a Rx to lower BP although my BP is usually low due to decent work outs. haven't done squat this summer though - the heat. the Rx is supposed to stop that drip, but it hasn't. they increased the dose, that didn't stop the post drip either.

it's a weird feeling, what can i say. just another symptom i have that adds to me not caring to socialize intimately.  

hang in there, i don't know what else to say ...

[JJJ77]

Thank you all!  What doesn't kill you makes you stronger, right? Ugh!!!

Udkas-I had a "cysto" which is a procedure in which they insert a scope into the urethra and look for any irregularities in the bladder.  I am sure you can guess that it is not the most comfortable of procedures but tolerable!  Hope your appts go well!!!

Hope you all are well!!!

[Lulu54]

Ufrustrated2, JJJ and anyone else suffering in silence with this -

please talk to your doctors about intermittent self-catherization.  once you get past the *ick* factor, it really is not that difficult to do and makes a major difference for those of us who suffer with retention.

I am rx'd to self-cath 4 times a day as needed this in on the dx from both my urogyno and my neuro.   It makes a wonderful difference in my ability to leave the house, shop, drive to work, and all those other things without worrying constantly about my next restroom stop.  

You need to be sure your bladder empties completely - stagnant urine  can back up into the kidneys and  do permanent damage.  

There is relief for this problem - please don't accept that you have to live with this problem.

be well,
Lulu

[Ufrustrated2]

I will try again and see the uro guy. i have embarrassed myself when wearing boxer shorts and the tpaper has slipped down my leg! LOL only bvd's for me! ;-)

[Lulu54]

Its such a hard conversation to begin with the doctor but I swear it gets easy once you start the discussion.  Please talk to your doctors and get some help - it is worth the momentary embarassment.  - L

[dptctms]

I had the constant urge to pee too. Most the time I was not emptying my bladder all the way, which can cause UTI's. Although, I am female, my urologist gave me Flomax. It has helped increase my flow which was very slow and hard to start. I was told I may have to start to cath , which is common with those of us who have MS. I'm very thankful for the the Flomax.  Maybe you should check and see if it could also help you. Good Luck!. I hope you find the answer to your issue soon.

[Ufrustrated2]

my pcp did rx me Terazosin (Hytrin). i don't recall it helping fully. but, i'll try it again. just got my refills for it. one a night, i'll give it a few months and see if it helps.

that post drip is frustrating but after years of this and the way i've compensated for it almost is second nature.