MS- Problems Urinating

I ‘m newly diagnosed with MS. I’ve been taking Copaxone for a little more than a month.
My Neurologist hasn’t been very informative at all. He said nothing about a follow up appointment or when I should notify him as issues come up.
I have been having problem urinating. It takes me an awful long time it get a flow going, although I have the urge to go. My lower back has a lot pressure built up right in the area of my spine. I’m unclear on what kind of doctor to go to.
Can anyone give me some advice?

[essdipity]

Hi, and welcome to the forum.

Unfortunately, your condition is very common with members here. You need to see a urogynecologist as soon as you can make it. It's very possible to have infections without even knowing it, not a good thing. And damage to the kidneys can result if urine backs up. So make this a priority. Of course, retention can be caused by other factors, including meds, but a uro-gyn will help you get to the 'bottom' of things.  :-)

Retention is just one of the possible bladder disorders, and it's one I have too. I've been cathing myself for 4-5 months now, as a supplement, not a replacement, for the regular way of doing things. This sounds yucky but gets routine very quickly. And I'd rather do that than take yet another med.

You need a neuro who will treat the whole disease, not just order Copaxone. If yours doesn't, find a new one. But it doesn't sound as if you've asked. You have to be proactive with this disease.

Again, welcome.

ess

[essdipity]

One more thing: If you feel that pressure and simply are unable to go, this is a true emergency. Go to the ER at once. Don't mean to alarm you, but this is important.

ess

[Aliveinme]

My neurologyst suggested I make an appointment to see a urologyst because I've had 2 utis in the last year.   I have not been bothered recently.  Have read that retaining urine is a good way to get a uti.  I have read that a urologyst can help with these problems.  There are several tests that they do and help available.  utis can lead to kidney infections and these can be serious.  

[cuttersmom]

You may have what's called Detrusor Sphincter Dyssenergia (not sure on spelling). Simply put, when your bladder sphincter should be relaxing so you can pee, it is actually tightening.  The signals somewhere between your sacral spine and your brain are getting mixed up.  This dx, I believe, is very common in MS'ers, but unfortunately there are not many options.  If you go to a Uro or Urogyn they will do a BVR to check what is left in your bladder after you pee. If you in fact are retaining, they may to a UDS, Urodynamic Screen, to see what everything inside is doing. Not fun, but necessary.

If DSD is the problem, and starting Copaxone hasn't relieved the issue, your options would be self-cathing, some doctors are trying Botox injections to relax the bladder, or a neurostimulator.

I had a neurostimulator implanted about a month ago and it is the greatest thing I ever did! Self-cathing was not an option for me at this time, so with the blessing of my Neuro, I had the implant.

Drawback to the implant..no MRI's can be done (is that really a drawback?).  My neuro and I agreed that if I got to the point where flare's were starting to occur often, or symptoms were progressing, I would have the implant removed.

Definately get to another MD soon.  If you are retaining, you could eventually start backing up into your kidneys, and then you have a whole bunch of other issues that you don't want to deal with.

Good luck.
Kristen

[Quixotic1]

Hi, Welcome to the forum.  Your describe two serious problems.  And everyone has given you great information about them, but I am going to say it again.

First, the inability to urinate or a feeling that you cannot urinate fully can be VERY serious.  Ess, Karen and Aliveinme are correct in saying that incomplete emptying of the bladder can lead to UTIs which can cause relapses in one's MS.  Also, if the problem gets severe, the urine can back up into the ureters, the tubes that carry the urine from the kidneys to the bladder and finally can back up all the way to the kidneys and cause severe damage - including renal failure.

You need to see your regular doctor and get a urinalysis to see if you have a urine infection.  You need to be evaluated as soon as possible by a specialist known as a Urologist.  If possible this should be a Uro-Gynecologist, as they are specialists in the urinary problems of women.  That is the kind of doctor that can evaluate exactly why you are having problems getting the urine stream going.

Here is an essay written to explain some of the problems people with MS can have with Urination.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/The-Neurology-of-Bladder-Incontinence/show/758?cid=36

The second problem you have is with a doctor that leaves you out in the cold with regard to how you are to approach this disease.  Giving you Copaxone was a good thing, but he should have begun the process of getting you educated on how to work with him to take the best care of you.  He sounds lazy.  I can't believe that a neurologist would make this diagnosis and begin Copaxone without making it very clear when you were to come back.  Usually it is in a month or two to see how you are doing.

He should also have given you clear instructions on when to call his office with problems.  The answer to that is anytime you are having symptoms that you don't understand.

What resources did he give you or recommend to you to become educated on this disease?  If the answer is none, you need a new doctor who will actually take the responsibility for helping you to know this stuff.  If you are like me, your MS did NOT come with a manual.

You must feel lost!  Well, we all believe here that the more we know about this disease of ours, the better we can help ourselves and our doctors - and the healthier we will stay.  Our whole purpose here, beyond friendship and support is to build our knowledge base, and educate others.

I hope you will stay with us and let us help you be active in learning what you need to know.  We have some good articles written by people here on topics relating to MS.  We can also point you to great resources for stuff.

In the meantime, get your urine tested and get a referral to a Uro(gyne)cologist.  And check around to find a better neurologist.

Welcome again,

Quix

[Quixotic1]

I meant Kristen, not Karen.  Sorry...