Does anyone suffer from bladder symptoms as a result of their neuropathy?
Like burning, urgency,frequent trips of course W/O infection. And trouble starting/seizing of the muscle. Is this considered autonomic?
Before they knew I had diseased nerves, my symptoms presented in my bladder first..so they kept doing cystoscopies ,thinking I had interstitial cystitis.
I am considering going back on pregabalin to deal with it

Any comments would be appreciated.
I hope everyone is well.

Hi
I have bowel and bladder problems which are classed as autonomic, I get frequent uti's and have the same trouble starting as you have, I have hesitancy all the time and some times I cannot start the flow so have to use a catheter. You mention pregabalin did they help with the problem? I have been on them before and had terrible side effects, sorry I couldn't be of more help.

The types of symptoms you mention are consistent with autonomic dysfunction. However, I have never heard of pregabalin helping with this type of issue.

Pregabalin helps with the burning aspect.
How is autonomic neuropathy diagnosed? The only test I've had specifically is a nerve conduction study which revealed abnormalities in my hands/feet/wherever the test was performed.
However, I have symptoms in so many other places where the test wasn't conducted-so they just keep saying that I have abnormalities in my hands/feet. See how this is a problem !!

I don't follow up with a new neuro until December. I feel discouraged .

Thanks for taking the time to read.

I should have been more clear in my reply. Pregabalin does help some with burning symptoms. I have never heard it being used or help with autonomic dysfunction you described...as in the 'function' aspects of initiating and/or complete emptying of urine.

There are urodynamic studies for some of the symptoms you describe.

http://en.wikipedia.org/wiki/Urodynamic_testing

As for other aspects of autonomic dysfunction/neuropathy and/or dysautonomia, there are various different tests for cardiac related problems as well as GI related issues.

Do you have other symptoms?

Hi :-)
I don't think its ever used for autonomic problems , no.
I have only been diagnosed with peripheral neuropathy but they don't know why I have it, and the burning and pain everywhere but my head.
Used to get insane pressure in my tailbone area, have had the bladder burning and urgency for years off an on. I had the urodynamics test done..it empties completely but doesn't feel like it to my brain.
I have mod-sev bi lateral carpel tunnel , and abnormalities in my nerve conduction study in my feet as well. They burn often.
I've had all tests done , like ultrasounds, STD tests ( for pelvic pain and burning ), had a laparoscopy to remove endometriosis which did not improve the pain. I suspect it has to do with my spine. I've had an MRI on my brain and I do not have MS.
Just wish I had an answer, or at least a way to help the bladder issue. I've been on Detrol and another medication used for incontinence but it didn't help.

Thanks so mucn for trying/listening

I have been told I have neurogenic bladder. I did see a neurologist who did a test but a catheter was not involved. I had to urinate and a machine charted the flow. I don't have the same problem as others here. I can start the flow but have to use a lot of pressure to keep going. I have had many UTI's. As a matter of fact, I have one now. I actually believe my family doctor when I was very young should have recommended a urologist.

Ok, this may sounds crazy to some but I believe it works. I opted out of the meds and went for bladder PT. Yes it is invasive but the therapist is wonderful and funny. I'm not embarrassed with her at all. Also, she treats many men too.

If you are suffering ask for the name of a urologist and if they think it is needed, try the PT. I am close to Philadelphia in PA. If you live by here I can give you her number.

lined_in_silver
Hi I have the exact same problem. I have now been diagnosed with polyneuropathy involving both long and small fiber and autonomic neuropathy.
When I saw your post , I was interested. This is the first time I have seen any one describing the same symptoms Ihad. With me too, the first symptoms of the neuropathy was in the urethra opening. onstant burning, urgency and hesitance and unable to empty. Urologist did cystoscopy. Normal. Had no infection.
Then in a couple of months, the burning starte to go down inside of my legs. I saw MS neurologist, no MS. I gave up . For many months I was having burning, then numbness in legs. I thought for sure I had MS.

Regarding autonomic neuropathy, there is a test called Autonomic Reflex Study. It measures orthostatic BP, pulse and breathing, and measures the sweating. This is how they can diagnose

Do you have constipation, acid reflux or gastric full ness? Ther is another gastric test calle gastric emptying study. If you have aotonomic neuropathy, you may have gastrofhoresis too, meaning slow emptying af stomach contents.

For the neurogenic bladder, there are some good medications that helps with this. Ask a urologist, Trying to think of the names,--- Oxybutuinin,

Hope you feel bette soon
Symnove

Hopeful thanks for the input. I live in Canada, but I do have a urologist. I have had 2 cystoscopies and there is nothing wrong with my bladder .
But no one has even suggested that it was nerves. Only after being diagnosed with PN did I link the two together

Syn- wow. I am so thrilled that something can completely relate. You're the first person since this started. Pls pm me to chat if you want. It is so hard for people to understand what I mean by burning in my bladder and my thighs. I called ambulance and they didn't know what to do . I have also had many times where I feel a fullness, pinching,and/or pressure in my pelvic area.
I tried oxybutinin-that was the first Med that I forgot the name for.
I can't imagine what pt for the bladder consists of. I did go for pelvic pt but didn't stick with it and was too expensive

Right now it feels full and I just went. It just burns inside and out and nothing seems to help.
Pain pills don't work obviously. Cranberry is useless as it is for preventing infections.
Growing up I had infections every couple of months.

Thank you for clarifying what the tests are for autonomic neuropathy.
I don't get constipated, but I can't eat a lot at a time -and come to think of it, this has worsened over the last few years. I feel like I can't move I am so full. Just after a normal sized dinner. I also have burning in my stomach that no one understands.
Please, if you think that this may be autonomic by the sounds of it,let me know and i will start the research and ask my doc for the tests.
My sweating is irregular but only really since being on the fentanyl patch

Thank you thank you thank you!!

Hi lined-in-silver
By the way, I am origionally from Canada, moved to the states 15 years ago. I did like the socialized health care in many ways, but then, here in the states on do get treatment a little sooner.
I will explain about my GI(gastroenterology) problems: For over 1 year I was struggeling, and doctors could not find out the reason for my problems. Started Jan last year, I had what I thought was heartburn and or gastric reflux. I saw my regular GI doctor, he started me on Protonix. After 6 weeks that did not help. Then EGD. Gastroscopy, negative. Time went by, I had cardiology work up, stress test and all. Then the GI doctor sent me to another GI specialist that did a tedt called Mamometry studies. It is a kind of study of the motility of the upper gastro system(like swallowing etc) fallowed by insertion of an elextrode into my esaphgus for 24 hours. He found that I had a lot of accid being squrted up. Then he did a Gastric Emptyins Study, that found that I had delayed emptying. AND this is caused by AUTONOMIC NEUROPATHY. I have to go back now and fallow up regarding diet etc.
Regarding the Bladderproblem: I was exactly like you. Had burning in the urethra. ( I also had some urinary tract infections, but that can have been caused by exactly this problem. If one does not empty bladder properly, urine stayes in the bladder, infection can develope) That is why it is important, that if you have been diagnosed with urogenic bladder you should take the medication to help regulate the bladder. This might all be a part of the whole picture of the Autonomic neuropathy. ( the bladder function is being regulated by the autonomic nervous system) I used the med called Enablex at first for a long time, and if was very good, but it is fairly new, and does not come in generic, so expensive. I switched to Oxybutinin.
The urologist diagnosed the Neurogenic bladder by doing a test called Urodynamic Studies( it was not very pleasant)
I have other neurological problems, so I already had a neurologist. But he did not seem to put any particular importance in the fact that I kept on complaining that the burning had now gone fown my inner thighs.
after a while, I saw MS specialist( because I did have some indications on MRI) but all negative. I even told this specialist that by now, I was feeling numbness in my both feet. You would thing that the doctor wold have "connected the dots" and told me perhaps thin was peripheral neuropathy.
\So time went by (I kept thinking I had MS) one day I started to get dicoloration on my legs. Saw Rheumatologist. I have the diagnosis of vasculitis.
So there is a possibility that the peripheral neuropathy is due to vasculitis. But I must hav had this vasculitis coming on for a long time. (I did have an aneurysm, but that was alled fixed)
Regarding the burning: For me, it is now ALL OVER THE BODY. This is called Small fiber neuropathy. I take a med called Lyrica and Amithriptyline for this pain.
To diagnose neuropathy I had EMG. The special neurologist I saw, could also diagnose small fiber neuropathy just by examination. But I later had this test: Atonomic Reflex Study. This confirmed Small fiber neuropathy.

Lined-in-silver, it is difficult what you are going through. All my doctor have said that "neuropathy does not usually start at such a place like the urethra and bladder. So it was strange to see that you had had the same kind of symptoms as me.

regarding the Autonomic Nervous system: It regulates the functions such as bladder, gastrointestinal tract, motility of intestines, emptying of stomach contents, heart rate and bloodpressure, sweating, temperature regulation of body, breathing, and I guess a whole lot more.
So if you have autonomic neuropathy, look out to make sure you do not have difficulties in these areas, it could be conected with your condition.

I hope you feel better soon
Synnove