Bladder issues

[kfletcher]

Sorry I haven't been on in quite a while, I had so much happen to me at the end of last year that depression has really taken a major grip on me and I'm trying my best to fight it...but it's winning.
I was referred to Vanderbilt University to start attending the ALS Clinics there and today was my first consult day. From what I understand and I might be wrong but I looked at several sites before coming here to ask this question. Now Mayo Clinic doesn't include it in symptoms, Nords does in some cases and I found another site that said it is a symptom. However, the Neurologist that runs the ALS Clinic told me that bladder issues aren't a symptom of PLS. He is having me send for the disc of my MRI that was done back in 2007, I haven't had any since because I had the sacral nerve implant put in for bladder issues and then October 2015 had a pacemaker put in.

Now my question: how many of you have bladder issues? I intend to print off and show him my findings of the sites stating it's a symptom and if everyone that answers is ok with it, I'd like to show him this also.
I go back in a month, waiting on phone call for the date, so I can bring him my disc of MRI and he's doing the nerve conduction test, I always forget the name of that.....is it an emg? He also is looking to see if I was misdiagnosed and if it can be something else...fun, fun, fun.
On a better note my first time in Nashville and next months visit will be a 2 day stay to explore and take it in, it's beautiful there!

Ty, ty, ty for anyone that helps me. I've been through more than enough and am getting so desperate for good news of some kind, or who knows where this depression will go.

 

[affected]

Would you mind telling us what 'bladder issues' you mean?

Frequency, unable to go when you feel the need, incontinence, something else?

 

[ShiftKicker]

Oh my goodness. I am so sorry you have had to struggle through this. Depression is so overwhelming and makes it very hard to see any hope or light.

I have read of people with PLS with bladder issues for sure. If you do not get response here, FB has an active PLS community. There are two groups that are supports for people with PLS. I have seen bladder and bowel issues (and people's solutions) mentioned there multiple times. If you search FB for the terms "Primary Lateral Sclerosis (MND)", or, alternately, "Hereditary Spastic Paraplegia HSP & Primary Lateral Sclerosis PLS" you will find two user groups where you will find these conversations.

best wishes

Fiona

 

[Nikki J]

Have a look at this poll
https://www.alsforums.com/forum/general-discussion-about-pls/24729-poll.html

Looking at the people who answered I think only 22 had PLS as PALS answered and also one person who did not have MND. Of those who reported bladder issues I think 10 had PLS

 

[Gorby]

Here is a recent discussion on the forum (mostly from PALS):
https://www.alsforums.com/forum/general-discussion-about-als-mnd/35935-bladder.html

This paper says 14 out of 20 PLS patients reported urinary urgency:
https://www.ncbi.nlm.nih.gov/pubmed/11571217

And this one is a review article that cites a number of PLS studies showing urinary urgency:
https://www.ncbi.nlm.nih.gov/pubmed/17212349

Many doctors use the original Pringle criteria from 1992 when diagnosing PLS. Pringle et al. concluded that bladder issues were not part of the disease, but this was based on only 8 patients. My belief is that about 30% of people with PLS have urinary urgency.

I find that the drug Toviaz helps with my bladder.

 

[old dog]

I definitely have bladder issues--urgency & incontinence. My neuro has said she doesn't think it's a PLS symptom, but it seems to me that a majority of PLSers on this site have some difficulty. In the early stages, I could get by wearing a pad but, now, I wear adult diapers full time. I take oxybutynin when I'm going somewhere and also restrict liquids--helps some. I tried taking the oxybutynin on a regular basis but seemed to build up a tolerance to it, making it less effective.

 

[kfletcher]

My bladder issues started as urgency, then needing light pads for a little spurt, continuing to adult briefs and complete incontinence, now I have an in dwelling Supra pubic catheter...to which is giving me constant uti's and yes I can say it mrsa. Sick of all I've been through, new Drs wanting to reassess me to make their own conclusion. Oh well, it is what it is. I will checkout the fb sites. Ty all for your responses, I appreciate the help.

 

[billbell52]

Urinary urgency is a fairly common symptom of PLS and I have. I saw it listed on a list of PLS symptoms and confirmed with my neuro. I'll go from barely feeling the need to go to feeling like I can't hold it in a few seconds. I haven't experienced any other bladder symptoms.

 

[Clearwater AL]

As we all know (hopefully by now) PLS involves voluntary muscles only. The bladder is an involuntary muscle. You do have muscles that you can employ to help you urinate faster, if your're in a hurry and want to help things along quicker. And... there are muscles you can employ to stop it if the container you have been given is too small to handle the load. It's complicated but generally urinary problems aren't really related to PLS. That one Neuro mentioned in the original thread was pretty much right on. One of the most common causes of urinary problems is inactivity. PLS causes inactivity so it just may come with the territory.

PS. Millions of people who do not have PLS are dealing with urinary problems. It comes with age which is also (for the most part) related to PLS and ALS being onset later in life. There are numerous ads on TV, magazines (AARP) for urinary problems. Adult diapers (Depends) are a huge product industry being sold. Kinda like Viagra ads.