Some Thoughts About Controlling Your MS Bladder

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I've now had diagnosed MS for over 30 years. A little over 3 years ago I finally had the Botox injections for bladder control. WOW!!!! What a game changer. No more waking up every 45 minutes to go to the washroom at night, no more rushing for a washroom, no more ALWAYS finding out where the washrooms are whether that be in a restaurant, shopping mall, theatre or ANYWHERE we went. The utter urgency, frustration an embarrassment were gone. It took me several years to finally get up the nerve to have this procedure but I promise that my life has changed ever since and totally for the better. I had tried every possible drug out there but the side effects were brutal. No more waking up in the night to go to the washroom or trying to seek out the closest table to the washroom or wondering whether or not I should go to any and every washroom as I passed it.
Totally recommend Botox if this issue is effecting your life.

I suffer from this badly ... To reduce embarrassment I do the obvious things, namely drink less coffee, drink less going into evening. I also use a catheter.
I become anxious when traveling and doing particular things ... This makes my urgency worse.

As a man I never thought about sitting to urinate. My wife suggested this and it does help. For some reason sitting to urinate helps me to completely empty my bladder.

Botox, Botox, Botox! I too have had Ms for over 30 years. I can now drink as much as I want during the day and not have to go every 5 min. and no leakage. Drinking now helps with constipation!

Good luck everyone as to what you decide but what do have to lose. ?

Urgency & frequency issues now dictate my life. It has now become my most significant fear/anxiety about traveling. Presently, it is my greatest hurdle in planning a trip to Normandy. Being in a foreign (to me) country with unknown ready access to bathroom locations is an overwhelming stressor to me - sad but true. I’m seriously considering Botox but do not want to have to cath or risk UTIs (especially since I don’t have that problem now). No answers here… Just my comments.

My urinary traits returned to 95% normal after two weeks on 100mg Biotin three times per day. I started in 2015 and have continued.

I tried Botox. On one hand, it was liberating- no more indwelling catheter, hoses, and bags! On the other hand, it was awful. I am unable to walk and transfer on and off the toilet. I could not catheterize myself while sitting on the toilet. So, it meant getting on the bed, pants off, and being intermittently catheterized by my husband at least five times a day. Frustrating! To drink sufficient amounts of water (I require much) I was also soaking many diapers between catheterizing. It pretty much confined me to the house or dehydrating to be able to go anywhere. I did not get a repeat injection of Botox.

Are there any bad side effects from the Botox treatment & how often is the Botox treatment needed?

I’ve had excellent results with Myrbetriq although it is pricey. I take it every other day with good results.

This has been working for me. I wipe with toilet paper and then I can go. I wipe, go, wipe, and go again. I don't know if it'd work with men but it helps me to go.

To all neurologists. The human genome - mapped. The medical community is capable of thinking outside the box. Re programming the Lingo-1 Li81 FAB Complex using Leucine as a way to communicate and BIIB033 as the blocker. Key - mathematics. Variable dosages. Think of the human brain as the hard drive. Lingo-1 sequence as the software. 601 signals. Nothing is broken. Figure it out.

For many years I had dreadful continence problems (mainly due to retaining about a pint of urine) which prevented me from leaving the house for more than an hour if at all. I was having to change so frequently that I couldn’t keep up with the washing.
I also experienced muscle spasticity in one leg making the simplest of actions (eg getting in/out of bed extremely difficult or impossible without help.
All that changed overnight when I started taking CBD oil. It’s nothing short of miraculous- I honestly can’t recommend it highly enough.

I have found modifying my diet has helped with the frequency to go to the bathroom. I found cutting out salt from my diet helped straight away and stopped 'phantom'urges to urinate too. I also have cut out spicy foods and acidic foods as these seem to irritate my bladder. Keeping to these modifications makes the issue generally manageable with the help of medication too. Sometimes I just have a curry to enjoy something tasty and make sure I'm not going too far from a loo the next day!

Was in the clinical trial for Botox many years ago. In Pittsburgh PA. Lived about 25 miles from hospital. After the painless procedure got in car for trek home. I knew right I had received the Botox and not a placebo. Having MS I was accustom to wetting myself. Five miles into car ride I knew that I would have the urge to go. Knew this because the inj. of Botox requires plenty of saline. When I didn’t feel the warmth of the urine coming out I started laughing then crying tears of joy. Don’t remember exactly how much I received of the Botox with the first trial however it lasted 6 glorious months! Returning for post exam was such a joy. Forget the details of returning for the trials but all in all I kept up with the injections for many years. Actually over at least 15 years of happiness. Self catching is a no brained for all you rookies. Sure it’s painful for a few months but don’t give up! It’s so worth it. Inserting the cath on a schedule and being vigilant is imparitive. Once you insert it hold ur finger over the end and you will know when to pull it out because the urine will stop on ur finger. Removing it doesn’t hurt at all. Insertion does get easier. I’ve been doing it so long I no longer even use an unopened one every time I go. I’m just careful to rinse and return inside pkg. it comes in. You also in time get to know your bladder tolerance. By that I mean you’ll know you need to drink more water if the urine starts to be cloudy a little bit. Perhaps you drank a little more tea in the summer and it starts to become a little cloudy so you need to switch to more water. You got this. Hardest part is insertion. It’s going to hurt but your hand will let the cath enter. You will feel tightening of the urethra, you’ll relax then push a little more then you’ll feel the urine coming out. A million times better than an indwelling cath. That pain only lasts one minute. Don’t hesitate. Don’t spend another dime on all the pricey depends. You don’t have to continue if you can’t handle it.

First off my bowel gave me no warning I needed to go, it was awful as I can't run to the toilet. I put up with that for a couple of years, then my bladder gave me no warning. I got really scared about that. I discovered OXYBUTYNIN for my bladder, taking away the feeling of urgency and it has helped my bowel as well. What a relief Oxybutynin has been for me.

These are hints I learned awhile ago, so some may be dated.
1. Caffeine and Nutra-sweet (aspartame) are bladder irritant.
2. Water soothes the bladder.
3. Timed voiding helps (trying to urinate on the odd or even hours).
4. Wearing a incontinence pad helps and there are both male and female versions.
5. Clean intermittent catheterization (CIC) rarely causes infection.

Your most welcome. If anyone in our MS needs to discuss this topic or comment please feel free to contact me. Having had MS for 30+ yrs I feel confident I may be able to muster up some common sense answers or ideas or experiences. To all women out there.. if you have children, you got this!

I’ve had the terrible urgency issues, hesitancy & some leakage. Fortunately, no UTI’s - I probably drink a gallon or more of water/day. I’ve always got my big Yeti cup with me.
I also try to time my potty trips - before I leave (w/ a pad) - and find out where the restrooms are wherever I’m going - which always seem to be located in the farthest back corner of huge places, like Home Depot! That’s ok b/c while pushing a cart - I can s l o w l y drunk walk back there?.
I also continually do Keegle (sp?) exercises in an attempt pelic floor strong.
Sorry guys, I don’t know how that would work for you.

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I have had MS for 25 years. The last few years I have had frequent UTIs. This year I have started having them about every 6 weeks to 2 months. Frequent urination, abdominal cramps and cloudy, smelly urine. I tried oxybutynin but nothing. Should I phone the neurologist about this? My GP is fairly useless. I’ve been reading about what different people have tried. Sure seems like a very common complaint of people with MS. Any other ideas? Any input would be appreciated.