neurogenic bladder
 

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.:sorry:

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.

neurogenic bladder
 

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. :mad:
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!!

neurogenic bladder
 

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

Hi again,
Thanks for all of the info. I will read over it a few more times and take notes to bring to my next appointment.
I think I had the urodynamics done - is that where they fill up your bladder until you cant take it , and the. They empty it out and measure how much urine you can hold and if there is any residual ? All done through a cystoscope? It was horrible. Even with the smallest amount of liquid it was painful
I tried amytriptaline but didn't notice much of a difference. However, it helped me sleep and I didn't get side effects. However, around the same time, I started with the tingling I. My arms.
I too, have burning everywhere. Its more prominent in certain areas like my thighs, bladder/pelvis,upper back, and feet. My hands were numb every time I wok up from sleep for months. That's when I was diagnosed with mod-severe big lateral carpel tunnel.
My bladder will be completely normal for months and then suddenly I have the burning, urge cry and frequent trips again . Nothing has helped this.
I should mention that I take lyrica also. I have never been able to take a lot because of the side effects.
Everything has come to a standstill as far as testing goes, and it frustrates me to say the least,because I have to suffer while things get worse. It seems that no doctor has heard of the pattern of symptoms I present. When it all began, my gp just kept thinking it was a uti,and anxiety. Everyone has disregarded the burning thighs and tailbone area pressure and burning. I did have an mri of the area and it was fine :(

So regarding autonomic functions, not long ago I was having rapid thumping heart beats for months. We did an ecg and everything looked fine! Diagnosis stress....there are times when I feel like I can't breath, but that actually may be anxiety. Who knows.
I would be up for doing the gastro testing. Like you, I thought it was heartburn or an ulcer, but antacids didn't help.

Aren't we lucky that our entire bodies are affected .. how do you deal? I hope the meds help you somewhat.

I would like to chat more, so any other info you think of will be so very much appreciated. I am lost, and suffering .:hug:

neurogenic bladder
 

Hi lined-in-silver
I have found this website of a neuropathy support group. They have a lot of articles.
www.neuropathysupportnetwork.org

I can emphazise with you.
When you said doctors do not understand. I had doctors saying the same things to me, stating that I must be depressed. But I think perhaps anxiety and depression probably reflects in our faces, because we are so frustrated and feeling so ill.

I want to give you this advise: Do not give up, and remember, that a lot of times the doctors just do not know, and/or they do not care to researc further, so they just leave the patient like that. You must be your own advocat. Keep on research ( even though, one would think, that would be the duty of the doctor) A lot of doctors(mine included) like to just say: diagnosis Ideopatic Neuropathy. And we know of cause, there could be 100 of reasons for your neuropathy. But the sooner you find the reason, the sooner the doctor can treat the underlying cause.

Have you had tests for Diabetes? Blood test HgAiC, FBS, Glucose Tolerence Test, etc?
Test for thyroyd problems?
Tests for all the different Autoimmune Diseases that can cause neuropathy?

I will tell you. In the last 2 years I have seen 6 neurologists. I did not care, I needed answers ( and I still do not have all the answers)
I dumped 4 of them, I now have 2 good ones.
I have found a good doctor at a university teaching and research. He specializes in neuropathy
Most general neurologists do not know a whole lot about it. They just think we all have diabetes.
ASK YOUR DOCTOR to REFER you TO A SPECIALTY NEUROLOGIST.in neuropathy
Do you need to see a Rheumatologist? to rule out aotoimmune disorders that can cause this symptoms you have.


Right now, I seem to have things in perspective.

Important:
Try to have as many possible tests and procedures necesarry to diagnose. Once you have test results, that will back up for you and your doctor.
by the way, I have carpal tunnel too. with all the other stuff
All the best

neurogenic bladder
 

hi

Regarding your rapid heart beat and chest problems with unable to breath, did you see a cardiologist, perhaps you need to have Ecocardiogram and stress test.

Ask your primary doctor to have a full workup on autoimmune diseases. This is a lot of blood tests.

Do look at that web link

Medical problems are discouraging. Try to keep thinking positive. You may have to quit walking until the cramping and pain are under control. I wish you luck with your new neurologist.

Give up walking ? What cramping?
I don't remember writing anything about that : /

I have had and ecg but not a stress test. I did blood work for many autoimmune diseases.
Working on a reply to your other large, very helpful and appreciated response :-)

Hi Synnove, I am finally able to respond to this.
So for starters, thanks for your understanding. I can't put into words how frustrating the last 3 years have been. It doesn't help that I am under 30 ,female, and have mental illness as well
Here in Ottawa, it takes roughly 9-10 months to see a specialist. I have only seen one, and she has done every test she can think of. As for blood sugar, I am hypoglycemic. I have low blood pressure too..everything is on the low side.
My thyroid has been tested many times, and is in the normal range, although my symptoms are that of hyperthyroid for sure. She tested for all kinds of auto immune diseases. Plus others, such as vitamin E, and Lyme disease.
My GP only recently referred me to a rhematologist, and I haven't heard anything. The current neurologist was trying to get me in with a different neurologist who specializes in the peripheral nerves, but they won't take me for whatever reason, so now I am waiting until December to see a different woman who interpreted the results of my nerve conduction study. December !! Who knows how much this is progressing in the meantime.
Were having a heat wave right now which has caused things to worsen. The fentanyl 25mcg patch I am on doesn't cut it anymore. Yet my pain "specialist" does not believe in breakthrough medication and keeps saying that opiates are bad, can cause more pain, and of course are addictive. It makes me wonder who the hell is allowed to benefit from these drugs that are made for pain??!!
I know it is because i am mentally unstable (depression, anxiety, and more)..and also my age. It is unfair and I feel under medicated.
They are SO quick to hand you the latest anti depressant though..which has more side effects, risk factors, you need to increase over time, and are dangerous to come off of suddenly. How is this any different than opiates? They are just more expensive. Doctors make more money for prescribing them. It seems that the best interest of the doctor comes first!!

hi lined-in-silver
What does that mean, that the spesial neurologist that specializes in neuropathy "will not take you"
I guess it has to do with the socialized healthcare system. But, try to INSIST !! Write an article in the local newspaper, say you are being denied proper health care!!
Regarding the referral to the Rheumatologist, and you are still "waiting to hear" ?? I think I know how it works (remember, I said I came from Canada? from Toronto, Ontario) Your GP has to make the referal He has his secretary make appointment, and when they finally get one, they will call you. You see, I know the system. But, try this: CALL, CALL, say on the phone you are getting worse. Write an article in the local paper again, say you are waiting to receive proper healthcare!!!
Why are you on the Fentanyl Patch? For neuropathy? Yes, I know it is very painful, but I did not know this was being used for that.
I know, those antidepressant meds, and anti seizure meds are VERY STRONG. At present time, I have told my rheumatologist I would like to come off Lyrica a bit, and try Amitriptyline which the neurologist suggested. I was on a very high dose of Lyrica, 500 mg daily. And it is affecting me very strongly on the nervous system.
I have a good rheumatologist, she is young in her 30 ties, and tries so many tests and procedures. She is also willing to listen to suggestions. I can E-mail her any time, she answers me, prescribe meds, and calls the pharmacy for me.
She told me to start Amitriptyline, low dose nightly, in addition to Lyrica for 2 weeks. then slowly decrease the Lyrica. The goal is to be on a combination of both. I now have decreased Lyrica by 150 mg, then (I think starting next week) she will increase th Amitriptyline. It is working
I'll tell you. When we are dealing with sickness like you and I have with a lot of pain, and especiall, when we have unsure diagnosis, we need to have frequent contact with our doctors.

The idea of waiting until December to see a specialist!!!! That just does not cut it for good safe health care.
In Canada, one could die, before one get the right medical treatment!
Waiting for 6 months???. Just call them and call them. Then if that does not help, call the ministry of health!! Complain!!
I'll tell you. I am a nurse, ( educated in nursing school in Canada)
And I know that one of the first and foremost things of importance in patient care, is COMFORT and pain control
Down here in the states, comfort and painmanagement is one of the important criterias inspectors look at when they come to our facility to qualify the hospital wwhen they inspect the nursing care.
So, heng in there!! make those calls!! If you are feeling realy sick, and unable, get someone else to write the newspaper article.
Synnove

Hi again,
Thanks so much for rooting for me. And completely understanding the Canadian health care system and its frustrations. I think this is the encouragement that I needed. I will not suffer for many many more months , without answers , on inappropriate medication, while being passed around like a hot potato .
When I contacted the neurologist number 2 after months of waiting to hear of an appointment , she said that they only take certain patients with certain neurological illnesses. Then she sent me to a different one ( the one ill be waiting 6 more months to see )
Oh boy .. Now I'm crying. I am not even 30 and feel that my life is over.

How do I go about writing an article ? I am totally capable - I just don't know how to get it published.

My pain is not being managed. The doctors are always on vacation, and put their best interest first. You're right , I could be dead by December.
I am ON IT!! Tomorrow I will start making calls. I won't let them intimidate me into being meek and passive. My life hangs in the balance .

The pain is everywhere but my head. It just feels like hot knives are stabbing me everywhere . It wakes me up. My guts burn , my feet burn, my bladder burns.
I saw two urologists who NEVER even considered that this was a nerve issue. Ugh.. What hell.
Went through two cystoscopies
I know a doctor whom I do work for - he got me two appointments quickly . I may have to big him again. I see him Tuesday.

Thanks.

By the way, I wish you luck with your combination of the two drugs. I would be willing to try amitryptaline again.
I know what you mean about lyrics messing with your nervous system. They don't know the long term effects of it. It scares me.