I’m Back on the MS ‘Bladder Coaster’

I am on and off the roller coaster. I do know what causes it - coffee, tea, carbonated beverages and alcohol. I have stopped using these items but I can not eliminate coffee, I drink one cup in the morning. If I have another coffee, which I sometimes do, I must suffer the consequences. I use Vesicare daily, mostly effective for nightime. That leaves me drinking Water only.. I have a new appreciation for it. This disease is ever changing, once you think you can manage something, it changes.

It's a constant battle for so many of us. We keep giving up the pleasures of adult life but still can swing back to a weaker state in one area or another. MS is a bear at the end of winter - mangy, starving, and on the hunt. Sometimes it's hard to make peace with that at all.

I too was on oxybutynin and changed to Myrbetriq. Some days I think it is a miracle drug and others I'm back to the same urgency issues. I have tried to analyze my diet, my stress levels, how much exercise I've done, and can't seem to pinpoint any one trigger for sure. I guess, for now I will continue to ride the merry go round. All aboard!

Hi Ed , I read an article about Oxybutynin that said there were warnings and side effects that were not very positive. I got rid of my leftover pills. Most meds have some kind of warning but I wasn’t happy about that one.I did take it for a while, and it didn’t do much for my bladder urgency issue. Then I read an article that has info that works for me. I get two prescriptions one is for generic Vesicare called Solfinicin (sp?) and the other is for Myrbetriq. Taking them singly which I did, Was not all that helpful, yet when I saw this article it said take those two drugs and rotate them every other day. It made a big difference. My bladder situation is so much better now. Not perfect but much much better. You might have to convince your doctor that it’s OK to give you both drugs and that you will not be taking them on the same day but on alternate days.. The article did mention however taking them in the same day was OK but I doubt most doctors or pharmacists would agree with it. The two drugs last longer if you’re doc is OK with it especially since Myrbetriq is brand name and somewhere expensive. 90days last 180 days taking each every other day. If you can find that article online print it out and give it to your doctor.

You did not mention it so I assume that some of your urinary issues are not related to prostate issues as well?

I hope it works for you If you try it. I look up at these two drugs online and there was some very positive feedback about them and helping urinary frequency.

Ed, like you I have been on that bladder coaster as well. Two things have practically eliminated my problems. First, I had a minimally invasive procedure called Uro-Lift. Relatively new, it is a fabulous procedure that reduces the pressure placed on the urethra by an oversized prostate. . Most men over 65 have enlarged prostates. I still had some urgency problems after the procedure, so I was given a medication called Toviaz. Toviaz works specifically to regulate signals that the brain sends to the bladder. Two weeks after starting this medication, my urgency problems have virtually disappeared. Toviaz is expensive, but it is a Pfizer drug and they do offer the drug free to those who qualify for their Patient Assistance Program. Hope this info helps those who battle the same problems.

Great column and I am glad you are improving! I have gotten up at least 2x per night (sometimes 3) ever since I was a small child. I have mastered the art of essentially sleepwalking to the toilet and then returning to bed as if I never left……

Ed, I am glad you are back to an acceptable level with your bladder. After trying numerous medications for my bladder, I gave in and had a suprapubic catheter placed. Sleep for hours at night. Wonderful! Unfortunately, now my bowel function is causing major interruptions in my daily life.

Have you tried Botox on your bladder? It has changed my world!

Hi Ed- I tried the oxybutynin years ago and didn't like it because I could always "feel" I was on it. I didn't seem to do anything for me anyway. It's a hassle especially as one gets older because you have prostrate changes and the concerns that go along with that...what really is making the bladder not function well when you're old and have MS? Certainly don't like the idea of "tubing" myself- that's not gonna happen unless there is absolutely no other choice. So then, it's just timing and being aware of self and bathroom locations in public spaces, and especially, wearing a diaper. It is so easy to do when out, and no side effects, and no fear of embarrassment. But does the fact I know I am wearing a "diaper" (65 cents each in large quantities on Amazon), make me think I am not a "man"? erhh,... no, it doesn't.

I have the opposite problem. I can-t go. Diagnosed in 1984 but know that I had MS before that time.

I self cath 4 times a day. It solved a lot of embarrassing problems.

For me I think it is the best solution - otherwise my bladder was always full until the last moment.
We did lots of ultrasound and dynamics studies to see if there was another solution.
Non of the drugs worked.

Every case of MS is different. Sounds like you are lucky on the bladder sphincter muscle control.
Keep writing. Your voyage is the most interesting and well written I have seen.
Bruce

Try AZO Go Less. It's amazing!!

I'm saying HELLO to Ed Tobias who might remember me from the good (bad?) old days in DC Radio and TV.
I'm reading this article because I'm married to a man who has MS. And I watch him struggle with it every day.
I hope is well with you and your family. If you'd care to, send me an email at my aol address as I don't read this newsletter as often as I should.