Bladder Issues

[jsb0410]

Hi to you all!

I saw a urologist the other day and she recommended either Myrbetriq, tibial nerve stimulation or Botox for incontinence issues

Do any of you have experience with any of these treatments?

Any advice would be appreciated!

Thank you!

[RoyceNewton]

She who must be obeyed had Botox and a much older ms lady had it, both think it is great and had no problems

[jsb0410 in reply to RoyceNewton]

Thank you very much!

[rjoneslaw]

I take Myrbetriq 50mg and I like it. my neuro rehab told me awhile ago that botox affects everything no matter where it is injected

[jsb0410 in reply to rjoneslaw]

Thank you I appreciate your help! I am nervous about Botox as well

[Drose1155]

I have tried Myrbetriq for several months and several dosages, 25mg, 50mg, then 50mg twice daily, with no real change. I refused Botox and nerve stimulation. My issues are not that bad. I am not incontinent, just wake up every hour to go to the bathroom. During the day, I am OK, not great but I can live with it. I do not want to take the risk of Botox having an adverse affect and then have to wait for it to wear off. I also tried Vesicare but did not see any improvement.

[jsb0410 in reply to Drose1155]

Thank you very much! I am afraid of Botox being systemic

I couldn’t take Vesicare due to autonomic dysfunction

I hate adding new meds so I have just been dealing with it

The incontinence is just upsetting

Have a good day!

[Angelchef80]

Myrbetriq did nothing for me. I have overactive bladder. Vesicare is what worked for me, but I had to stop taking it. I originally took Gilenya , which I had to stop (now do tysabri infusions), vesicare could not be taken with it. I now take azo bladder control which seems to help.

[jsb0410 in reply to Angelchef80]

Hi I’m glad that you found something that works for you! I couldn’t take Vesicare and have been dealing with incontinence for over a year or so

I currently am undergoing acupuncture for spasticity and nerve pain so I was thinking about the nerve stimulation option but I’m not sure

Thank you!

[nes78]

myrbetriq at 50 works pretty well for me. vesicare did nothing at all. it doesn't solve the problem totally but helps a lot. have not had botox for bladder but had cervical dystonia years ago and couldn't move my neck so they tried botox. didn't help.

[jsb0410 in reply to nes78]

I’m glad that the myrbetriq is helping! Im still debating options I might just want to hold off now due to some cardiac issues and starting new meds can sometimes be problematic

Thank you for the info on the Botox have a great day!

[Sukie427 in reply to nes78]

I took Botox for migraine quite a few years ago---twice! Not only didn't it help, it made them worse! However, my husband's stroke left him with eye tics, and it seems to have worked for that. Not sure that I'd risk it for any systemic problem.

[msjem]

Myrbtriq was helpful but couldn’t address full blown incontinence. I got Botox and am very happy. I need to be vigilant to empty fully and regularly. I am curious what is meant by affecting everything?

[jsb0410 in reply to msjem]

I’m glad to hear that Myrbetriq and Botox both provided some relief! I agree about trying to empty bladder fully.

As far as affecting everything I think perhaps that most meds are systemic (Botox etc)

I appreciate you sharing your experiences! Thank you very much

[Jds1945]

I also have many bladder issues and i am fortunate enough that my urologist has a husband with ms. First we tried meds but it left me so dry it was hard to even swallow. Then I went to botox injections and that worked for quite awhile. Then it stopped. Now I'm doing the ptns. Thats the tibial nerve stimulation and have doing it for quite some time

They give me a book to track what I drink. how many times i go. And there is also a place for urgency, accidents, how many pads i change. It does help me . I go now every 2 months. It does help and keeping track keeps you on track

You should urinate every 2 hours to train your bladder. I have to travel to my doctors an hour away each time but so far i think it's helping. I hope this helps jsb0410.

[jsb0410 in reply to Jds1945]

Thank you very much for sharing! It is always very helpful to hear others experiences. When you began the PTNS did you have to go frequently?

Do you find that it has improved urgency/frequency etc. ?

I think a book and bladder training is a great idea.

I find that acupuncture has been helpful with other MS symptoms so I am leaning towards this option

Thanks again!

[Jds1945]

i started in april and wrote down what happened every day . i went once a week in the beginning then once a month and now i go every 2 months. just to keep me going . at one point in there i had a cat scan from my abdomen to the pelvic floor. i tend to get quite a few uti's and many are bright red blood for a day and a half with clots. my doctor wanted to make sure there was nothing was going on. but i was fine. she said it's the bladder just shedding or something. i have very few urgencies now and only once recently where i couldn't make it. lol training the bladder i think really helps . i really feels it is helping. what symptoms do you have acupuncture for. i know i had a friend who used. she is since deceased just recently. well something to think about

[jsb0410 in reply to Jds1945]

Thank you so much for the information on the bladder retraining and the ptns!! It is great that you have been keeping track of your symptoms

That must have been scary about the blood clots!

That’s great that the ptns has so decreased the amount of urges

I have had nerve pain/spasticity in my arm since October that nothing has relieved

I am sorry to hear that your friend passed, losing someone close is very hard

I started acupuncture about a month ago and it has provided a lot of relief

The doctor uses a combination of traditional acupuncture as well as pressure

The pain is still present but is greatly decreased for a few days after each session

Thanks again and be well!

[YLGram]

short answer is no experience with those procedures;BUT after multiple UTIs in a row a few years ago, I did find that wearing incontinence products can be part of the problem as bacteria grows rapidly in urine, even just a drop.

[jsb0410 in reply to YLGram]

Thank you so much for answering! I’m sorry that you have had to deal with so many UTIs

I agree about the incontinence products it is difficult to use them and prevent bacteria

Thank you and have a great night!

[Sukie427 in reply to YLGram]

YLGram , did you your UTIs cause pseudo-relapses or flairs of your MS symptoms? I had 2 UTIs and they both knocked me flat!

[YLGram in reply to Sukie427]

Oddly only two of three did, but I think that was because my temp went up on those two. One we caught in time so was low grade enough to have no pseudo-relapses. But the process taught me to NEVER wait more than 3 hours if there is bladder leakage on the pad (that is the window for bacterial growth) and really work to strengthen the pelvic griddle(MS GYM) to avoid the whole issue.

[Jds1945 in reply to YLGram]

I am glad you talked about incontinace products. It makes so much sense, it is a breeding ground for bacteria. We do water aerobics to try to keep moving and My uroligist also told me not to wear a wet bathing suit home, even if it's only 10 minutes to get. Home because it also could breed bacteria. So even though it can be exhausting i change before I go home

[Jds1945 in reply to YLGram]

I read that awhile ago from you and my friends told me too. Since then i dont think I've had a uti. Also i used to wear underwear to bed and stopped that they told me "let it air out"lol . Of course i have one of those hospital pads under the sheets. No accidents at all and it if a little comes out i have my husband wash the sheets. It beats UTI's.

[kycmary]

I am scared of Botox as it is a poison & has a tendency to travel to other parts of the body! just be careful

[jsb0410 in reply to kycmary]

Thank you very much and I feel the same way! Be well!

[Jds1945 in reply to jsb0410]

My urologist has a husband with ms so i feel she wouldn't recommend something something she wouldnt give him. It is very helpful havinng a urologist who really understands ms. I feel fortunate

[kycmary]

How are you doing with Ocrevus? Is it getting any better? I hope so. Mary

[jsb0410 in reply to kycmary]

Hi Mary, I have been doing well thank you so much for asking! I will be having my first full dose In September

I have had some improvement in some of my symptoms in the past few months (pain and spasticity) but I have had more balance issues

Hopefully after the next infusion there will be an additional improvement

Thank you so much! How have you been doing?

[Sukie427]

Hi, jsb0410 . I have been on Myrbetriq for over 2 yrs now. I do get breakthroughs once in awhile but I have to say that it does work well overall. Better than my prior experience with Ditropan. And no side effects!

[jsb0410 in reply to Sukie427]

Hi! I’m glad that the Myrbetriq has been helpful to you

It’s great that you haven’t experienced any side effects with this medication

Fantastic that it is providing some relief

Thank you so much for sharing!

[Jds1945 in reply to Sukie427]

I tried different types of meds but my mouth got so dry it was even hard to swallow. But everyone is different

[kycmary]

I have been well still have balance problems on going issues. But in general I believe I'm doing great. Wake up each morning & say thank you God for another day of life. Had my first full dose last June, it's strange not having to have any thing for 6 months and not having a relapse. Hope you continue to improve also thanks for sharing Mary