This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there,

I was just wondering if anyone has any suggestions for improving bladder dysfunction in MS? I've done a search in the forums but have only found passing references. I know it's not really something anyone likes to talk about, but it's certainly a problem for me, so I guess others are dealing with it too.

I am 34 and have been doing intermittent self-catherisation for about 18months and take 2.5mg of Ditropan twice a day. One neurologist that I saw said that generally she treats bladder dysfunction as a separate issue because once there are problems they rarely improve, even if other MS symptoms abate.

I am "managing" the bladder (as the professionals like to put it) but I would really be interested in anything that could improve it. Any suggestions?

Vanessa

You are right in that this is a topic no one wants to discuss. The anonymity here and feeling that I am among friends give me courage to share my situation. You are not alone; bladder problems are common to MS.

After I tried Actos for control of insulin and pre-diabetes, I developed swelling of the feet and legs. To control that I took a diuretic which increased urination. With MS it seems that a small amount of urine can cause almost a spasm of feeling the need to urinate often and/or of urgency. (As the "insulin believer," I think the irritation of insulin in the urine causes damage to kidneys and bladder and contributes to the problem.--just MY idea!) To relax that spasm my doctor prescribed Detrol, which has helped, I think.

Earlier I had had frequent nighttime bathroom trips. I had tried a "homegrown" fix which reduced them to once per night. But the once-daily Detrol capsule is easier and controls trips to zero per night half the time.

You seem to be doing well, handling it one step at a time. Just collect the information along the way as you make choices. Work with your physician.

I have heard of others who used biofeedback, surgically implanted gadgets like pacemakers (a smaller one is available soon, I've heard), even Botox--though I have not tried any of these personally. Perhaps they are options to research. Like treatment for MS, there is no guaranteed 100% answer for this problem yet either.

Hi Lyndacarol,

Thanks for sharing your experience. I know it's not an easy thing to talk about, but you are right about everyone here being supportive and helpful. I will keep the Detrol in mind in case I need to change my current medication.

Thanks,

Vanessa

hi ness have you looked at low potassium as a possible cause? or magnesium? (i'm assuming you take it easy on diuretic bevvies...)

i found this... not a journal abstract or anything, but potentially useful info

http://www.alive.com/2967a9a2.php?subje ... _cramb=424

Nutrition
Incontinence is often due to a magnesium deficiency. Good sources of magnesium are almonds, cashews, figs, whole grains, dark green vegetables and fish. Chives and raspberries are popular remedies to control frequent urination

Nutritional Supplements
Vitamin and mineral supplements help strengthen weak sphincter muscles and support nerve transmissions. Magnesium and vitamin E are particularly useful for building up weak muscles. Both calcium and magnesium are also helpful for maintaining a healthy nervous system. The B vitamins are essential for the nervous system to function properly, and are often in high demand if stress or nervous tension is a problem.

Daily Dosages
Magnesium, 250 mg twice daily
Vitamin E, with mixed tocopherols, 400 IU daily
Calcium, 1,000 mg daily
Vitamin B complex, 100 mg daily

Hi Jimmy,

Thanks for that information. I will up my magnesium and potassium and see if that helps at all. I don't drink coffee or cola and I only drink decaf tea. As I said, I am managing with the Ditropan and catheter at the moment, but it would be nice not to have to use it every time!

Vanessa

heya

i'm not fixated on magnesium or potassium - they were just the first results i found. i wouldn't want to forget about the possibilities of vit e, calcium, or b complex per that little blurb.

i guess i thought you might want to look at the usual sources of each, look at how deficiencies of each might link to urinary probs, and how each could tie in to your personal situation, to find a most likely culprit.

i usually implement a whack of ideas at once and never know exactly which element made the difference, but if you have more patience than i, why not rank potential suspect nutrients, and try supplementing more of only the most likely culprit first.

just a thought good luck

Nessabear,

Here are three research articles from the UK MS Society website.

I've only had one accident just after starting Rebif. When I mentioned it to my neuro he thought it was probably an "isolated incident". But his words of wisdom (7 years at med school and 10 years as a neuro) - "you might want to leave a spare pair of trousers at work". Brilliant - I can now see why he earns in the region of £100,000 a year!

All the best

Ian


http://www.mssociety.org.uk/research/re ... t_553.html

http://www.mssociety.org.uk/research/re ... t_746.html

http://www.mssociety.org.uk/research/re ... t_799.html

This is a very scary subject to me. I have had bladder dysfunction since my first bout of MS symptoms over 2 years ago. I do not have a problem with incontinence, but I do have issues with a weak urine stream, especially in the mornings.

I am curious about two things: How long have you had to use a catheter, and is it very uncomfortable to use?

I figured I would share my experience with my own bladder problems because you are not alone. I have had to use IC (intermittent catheterization) from time to time (a few days or weeks) when dealing with some problems - hesitancy starting, incomplete voiding, weak stream, etc. It really is no big deal once you learn how. IC might look scary but in reality it’s painless. I recommend finding a urologist and making an appointment I know how difficult a subject it is to discuss, even though it is so common. I always felt like my body was betraying me. IC really does give me back more freedom or at least some control. Hope this helps.

Matt

Hi all,

Ian: thanks for the links. I will look at them later today when my little boy is at preschool and I get some uninterrupted reading time!

Matt: thanks for sharing your experience. I agree that the intermittent catherisation is not as painful as it looks and it certainly gives you much more freedom.

EyeDoc: I think the bladder thing is scary to everyone. I cried when the urologist told me I had to start using a catheter but it's been at least 18 months now and it really has given me a lot more freedom and peace of mind, especially when going out. And no, it doesn't hurt.

I was having trouble with feelings of urgency, starting the flow and voiding. This meant I would be going to the toilet a lot, but not actually emptying my bladder properly, so it would sometimes choose to empty a bit on its own! It took a few goes to get the hang of the catheter, but the MS nurse who came to my home to show me was very patient. I have to use the catheter every time now, but that is so much better than not knowing when my bladder is going to betray me. I take Ditropan which helps curb the feelings of urgency and when I go out I take the catheter in my handbag in a plastic bottle filled with water and anti-bacterial solution (I often think that if my handbag gets stolen the crook is going to get a big shock if he takes a drink!).

I am going to do some experimenting with supplements and I am also hoping to start Dr Wheldon's antibiotics regime soon, so I will report back here if there seems to be any improvement on the bladder front.

Vanessa

Hi Vanessa,

I have been doing IC for a little over two years. A couple months ago I was sent to a neuro-urologist (by my urologist).

He feels as though I am a candidate for a neuro-transmitter. It is like a small pace maker put in the abdomen. He said they are having very good results with them. This is fairly new, I am really thinking about it. He said that most patients that have them put in no longer have to do IC. That would be wonderful!

I need to do further research and maybe hear from some MSers who have had them put in before I make a decision......

This is exciting to me, there are new treatments coming out to help us deal with some of the bothersome personal problems we can have.

I don't know about you, but you can't possibly have a good day if you can't pee!! And how do you explain that to someone who thinks "you look so good"!

Hi Babs,

I totally relate to what you are saying! I think I read a snippet about neurotransmitters somewhere (can't remember where) but nothing substantial. Certainly sounds like a great option for people in our situation. I too will do some further research and ask my urologist about it next time I see him.

Vanessa )

Nessa

Here's something to read. http://www.mssociety.org.uk/document.rm?id=68 It is the transcript of a presentation given by Professor Clare Fowler to the UK MS Society two years ago. It is a little dated but still all very good stuff. Prof Fowler works at the National Hospital for Neurology in London a UK centre of excellence.

I like Prof Fowler she's a super intelligent lady not to proud to say about one topic, "So I’m afraid this is an area about which you as the patients almost certainly know more than the doctors and the nurses, because you’ve looked after it yourself, ..."

_________________
John
I am what I am

Hi JFH,

Thanks for the link to the article by Dr Fowler. I found it reassuring to know that my urologist did all the right things (measuring my post void resudual volume etc) and also good to know that there is more research going on.

Vanessa