This Is MS Multiple Sclerosis Community: Knowledge & Support

I have always been one that had to "pee" all the time but now I have to go so much that its downright annoying. I can't sleep an hour without having to go. This has been going on for months now. I cannot drive more than 10 miles without having to stop and if I don't go, it actually starts to make me sick like dizzy and strange feeling.

I had some minor bladder testing when I went in for my Tysabri ( yes after almost a year of no MS meds, I agreed to Tysabri and have been on it for 4 mos).

I voided in this aparatus of sorts and voided 182ml with no problems

The Nurse Practioner asked if I emptied it all. I said yes. Felt like I did.

They did an ultrasound and low and behold I had 370ml residual. Post void residual left.

She is sending me to the URO doc but.......please tell me they do not cath you to get rid of this. She said there is medication but that I had to get that out of me. I understand that fully. I have never however been cath'd and I refuse too be. So there must be another way.

Anyone that can shed light on this please do.

I wonder if this is the culprit of my unknown fevers. Also I never test positive on a UTI. I'm always clean. No UTI's, not ever

I never had one my whole life come to think of it.


Thank you for your help

That is the exact scenario I have. Pee about 200ml and leave about 200-250 behind. I cath now and it's totally liberating. Before I was like you; a slave to the bathroom and can't hardly go anywhere without my road urinal (I just do it right in the car, but I don't think females have that option!). There are pills for over active bladder, but they are contra indicated when you aren't emptying your bladder completely.

I hate to say it, but the only way I know to get it out is to cath. I used to wake up about 4-8 times per night and would pee the bed about every other week. Granted it was a small amount, but it's still very disheartening; I was sleeping with a towel over a garbage bag under the fitted sheet. If you leave that much residual behind all the time, the UTI's will start happening and you also put your kidneys in danger if it gets worse.

The thought of it is a whole lot worse than the act of it. Like I said, it was liberating to me. My afternoon cath makes it so that I don't have to go for hours. On the weekends that's when I get all my errands and driving places done if possible. Bladder issues suck the hodge in a big way, but leaving lots of residual behind is not a good idea as I'm sure your uro. has already told you.

Good luck with this, but the nightime cath is just a godsend. I sleep most of the night now, and at least 5-6 hours uninterrupted. And it hasn't messed with my ability to go in between. I still get about 200 ml out per void and I don't dribble or anything. It's freed me up to sleep, to get more done, and to quit pissing the bed. I can sense your anxiety, I had it too until I actually did it and then slept all night. I wouldn't trade my caths for anything right now. I'd be a mess without them.

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Well I don't see the Uro until November 5th. The initial testing was done by my Nurse Practitioner.

Now I'm a Nurse too and from what I have always seen, cath's hurt. Especially in men. Don't you find this a painful procedure to endure everyday?

I just don't want one and I wish there was another way. They also can cause scar tissue over time.


Sometimes I can't believe I have MS. I just can't believe this.


What do you use for bad pain other than Baclofen? Anything?

Also how long have you had MS and what treatment are you on.

Thanks for your time and responses. It does help to know someone else understands what I'm going through.

I always found this site to be so helpful and the people here are so kind

Well the cath's I use are only in for about a minute. They are the straight caths that are used intermittently and they don't hurt at all. Maybe the first couple of times it was uncomfortable, but probably because I was tense. I have never felt any pain of any significance at all from cathing. So there really is nothing I have to 'endure'. It's a very benign act to me and one that allows me to live more normally than were I not doing it.

When you say "I don't want one", it makes me think you are talking about having one in all the time. That's not what this calls for, especially if you are still urinating on your own. Just straight cath in, drain the bladder, straight cath out.

I really don't use anything other than Advil occasionally for pain. The spasiticity can get to hurting pretty good sometimes, but it's not sharp. I only use the baclofen maybe a couple times a week when my calves really tighten up and my knee is screaming. I know what you mean about not believing you have it sometimes. It just sucks, but since I want to be as engaged with life as I can be, I choose to do things like cath to give me more freedom. I absolutely wouldn't recommend this to you as medical advice, just what I deal with, and it sounds very similar to your situation.

I've had MS for just over 8 years now, am secondary progressive after about the first 5 years of RR. I am on no meds right now as I've had the CCSVI procedure done. I do, however, take LDN, but no FDA MS therapy. I was on Tysabri but was still getting worse so I stopped it just before I had my jugular stents put in. If you're not familiar with that, it's the last thread right above 'Daily Life'.

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Hey There Again, Thank you so much
Oh trust me. I do all I can to live the best life possible but I'm so ANTI MS and I really can't even stand the thought of it. I know..I know

Even when I go to get my Tysabri..I do not like being around the other MS patients. I stay in a recliner far away from the rest. Usually I"m coming off night shift ( I'm a Nurse) and so I just want to sleep the treatment away but mostly its because all I hear is DEPRESSING stuff. They are all on disability in that group. They all go on and on about it and it drives me crazy.

I just want to do the best I can everyday and night to fight this monster not cave into it.

I'm nice to everyone but soon as I get their the IV Nurses know...I will find my corner, get my IV and go to sleep. They are awesome to me too.

I had one lady shocked I was still working as a Nurse and the intensity of my particular field. She told me I would easily qualify for disability.....

I don't want to be on disability. God forbid I may need it later down the road but for now I can walk, I can move and even when I can't...I force myself too. I'm not caving into this monster as much as it wants to take my life from me. NO WAY!

The only thing is I wish I had a better Neuro. She's good but I can't see her. I have not seen her in a year. I'm pawned off on her PA because their practice is SO overly busy. I have an appt with her November 9th but that was an appt made in Oct 2008. How insane is that. But the IV Nurses and Center are awesome and they help me. As for the Neuro I have an issue pending with them right now but details on that later.

Oh....one more question. Do you get that tingling wierd sensation feeling as if almost like the chills or something? What is that? I run a fever here and there but this is not those kind of chills. Its the strangest stuff.

My main stuff is that, the pain in the legs/hips and that feeling of heaviness like my legs are pure lead. My right side is weaker and the fatigue is bad. They had me on Provigal but I stopped a month later. I am on a low dose of Adderall. I take only that and Tysabri and something for pain here and there but rare.

I do notice my grip is not good when I try to open a jar or something. I don't have the same strength as before.

Thanks for your help. I really do appreciate it.

I have always been given more help here than from my Neuro.

Thanks lew for the info. I am trying to encourage my husband to cath. He has a bad UTI, and that means he can not walk....I had to drag him across the floor when he fell yesterday and it was a stressful time trying to get him on the bed....I laughed at your garbage bag towel combo...exactly what I improvised with today, after the protective cover needed washing. We don't have any aids here, but for times like these, I am going to have to get a walker and who knows what else.

Hey there - I'm assuming you are a woman from your avitar and I wanted to say I had catheters when I had both my kids (c-sections) and they did NOT hurt a bit. Ifs just a strange feeling for a nurse to be doing things with that body part!

Hi
I know how you feel about caths - I dreaded them. I eventually had to cave in about 5 years ago and just use one occasionally. It was uncomfortable because I was so tense, but soon afterwards the bladder issue got better. Another MS friend of mine uses them daily and they've made a huge change for her - her social life has improved and she's much happier now without having the constant UTI's and looking for loos. She said the last time I saw her they were great.

The way I see the cath issue is this - You can either view the caths as 'freeing' or 'disabling'.
I know that sounds airy-fairy but it's like this - if you use the cath you are free of the tyranny of the constant going to the loo......they free you up. They are there to help. You may not need them for months, just use them when you do and it frees you up to get on with your life. No-one else need know, and all they do is give you a hand while your body is giving you a hard time from the MS. Next month you might not need them at all.

I think try them out and you might have a very positive experience.

p.s. edited to add - I've seen lots of ads for a herbal product called "Waterfall D-Mannose" in the magazine MS-Pathways - I've no idea if it works but I remember the name coz I thought I'd get it if I had to use the Caths again - seehttp://www.msrc.co.uk/index.cfm?fuse ... ageid=2749

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

Maybe you have contracted a UTI? This might be the reason behind the frequency problem.. I'm prone to them, I refuse to ctheterise myself but I don't void completely it seems.. With a UTI I have the same trouble as you.. Without a UTI I'm normal frequency wise.

I am with Lew, I dont know of any other way to void the entire amount. I was PETRIFIED when they told me I had to cath. I am a big boy and not scared of to many things, but cathing was one of those taboo to even discuss thing with me. Lew and Arti, pretty much "held my hand" and gave me encouragement, and with their support, I cathed. As Lew stated, liberation, freedom, uninterupted sleep, and did I mention freedom? I was ready to swallow a bullet when my uro told me I had to do this. I look back on it now and laugh. I am now totally cath dependant. I got through 180-200 caths a month. I to couldnt sleep, I started keeping track of how many times I got up during the night to pee, and my averagewas 16x a night. Now I cath every 4-7 hours depending on my fluid intake. When you do,it will feel SO GOOD, when you completely empty everytime. So trust me, if I can do it, anyone can....

tt89--Perhaps I should not contribute to this thread -- I do not self-catheterize yet (though it seems to come to most of us with MS eventually), but I did have urodynamic testing a few years ago and was taught how to do it. (Most women have done many more unpleasant things--using a tampon for the first time as young girl was scary, too.) The urologist told me at that time that she had taught young children how to do self-catheterization. I cannot add one thing to the excellent advice you have received from the others here. I am sure you can do it!

The nature of this website is usually respectful tolerance of different, personal opinions. Most of my ideas stem from my belief that excess insulin is fundamentally involved with MS. I, too, have experienced UTI symptoms, but no infection is found upon testing. Insulin is a very irritating substance and I believe it irritates the bladder, mimics UTI symptoms.

You wrote: I experience this sensation, too. Again, I think the culprit is insulin. I think it is irritating inside of the blood vessels -- I liken it to "lye in the pipes." It reminds me of the chills I got after a really bad sunburn. A raw feeling!

On your neurologist, I have my unique perspective, of course. Since I know my neurologist has no effective treatment for me, I see him on an "as-needed basis." I prefer to work with my internist on problems that come up. AND it is much easier to see him in a timely manner.

And to your comment: I have the heaviness in my legs also. Once again, I think that fluid is leaking into the tissues from the blood vessels because insulin has damaged the blood vessels. I think our legs feel heavy, like "pure lead," because they ARE heavier with fluid.

If you have other ideas on these situations, please share them. We all have a better chance finding answers if we brainstorm.