Urology Diagnosis Via Neuro Doc

[Guest Mary from OH]

Ok. I have had an exciting last week. I became paralyzed from the waist down 2x, had my urodynamic tests done, was hospitalized, got the stomach flu, all (of course while having a debilitating migraine!) .... Did I forget anything else????!!!!!

Anyhow, the long and the short of it is that my urodynamic testing showed that I have a neurogenic bladder. I have NOT had a chance to speak to my Urologist about this directly as the day of my appt I was dying with the stomach flu. However, I had the RN talk to my Neurologist in light of my hospitalization in case she felt anything may be relevant. They are also evaluating me for possible MS. All tests (CT of head w/o contrast, MRI of lower and mid spine) have come back "normal" - as in, nothing to suggest the reasons for paralysis.

So, some help here on the neurogenic bladder thing. How do I know if it is coming from the possible MS or from POTS? How is yours treated? HELP in general!!!!!!

Thanks!!!!!

[corina]

hi mary,

i can't really help you with this, it's just that i wanted to say that i'm so sorry that you're having so much trouble lately. i really hope things will work out well for you.

best wishes,

corina

[yikespanic]

Mary,

I really don't know anything about it either but I will keep you in my prayers, I am sorry you are having hard times. I do hope they can figure this out for you and quickly.

Take Care

Kim

[JenniferInOhio]

I don't know either ~ but I'm so glad to hear that it is not the cancer that you were afraid of... I hope someone can give you some answers.

[MomtoGiuliana]

I know there are various causes for this, but isn't this a POTS/autonomic dysfunction symptom? It seems others on here have had this diagnosis. I also had this diagnosis for awhile--my bladder would not empty properly. It corrected itself eventually, but I had to be on antibiotics for months. The urologist told me that he felt it was due to OI and the fact that I was so sedentary.

Katherine

[Poohbear]

Neurogenic bladder can be a symptom of autonomic dysfunction. I self-cath when I need to. Did they recommend this for you?

In terms of the paralysis I don't know. Since the other tests are coming back "ok" then I would make sure they have look at the brainstem and neck area (which is where compression starts and can cause these symptoms if there is any narrowing).

Good luck! I'm sorry you have been feeling so miserable!!!

[BuddyLeesWife]

My husband was diagnosed with neurogenic bladder (causing urinary incontinence) and also had fecal incontinence. For him, this was the absolute worst of his symptoms and intolerable. The EP cardiologist sent us to one of his urologist buddies and he was great. He prescribed Detrol LA hoping that he could "buy some time" for when an episode started to when it became a real problem. The drug has worked wonders for him and has also helped control the fecal incontinence as well (the urologist was hoping for this result). For my husband, it is definately part of his NCS, his body basically decides to flush whatever it has when he has a pre-syncopal episode (sweat, urine...you get the picture). He still might get the urgency but he now has enough time to deal with things. It has been maybe 6 months now with no accidents. You can do a search on "incontinence" and you will see my previous postings. When you look up Detrol LA and read the fine details you will see that it is a "smooth muscle antispasmotic" - the only side effect he has from it is dry mouth but that just makes him drink more so it is OK. Following is the Medscape Drug link:

According to the International Continence Society (ICS), overactive bladder disorder is characterized by involuntary detrusor contractions that may occur spontaneously or may be provoked (by rapid filling, alterations of posture, coughing, walking, jumping). An overactive bladder of neurogenic origin usually has been referred to as a hyperflexic disorder, whereas one that is nonneurogenic is referred to as an unstable disorder. The hyperflexic overactive bladder disorder usually involves a neurologic disorder. Tolterodine tartrate is used for the management of symptoms associated with both neurogenic and nonneurogenic overactive bladder

http://www.medscape.com/druginfo/monograph...otype=monograph

Excert from Neurogenic Bladder Author: Jong M Choe, MD, FACS?,

Normal voiding essentially is a spinal reflex that is modulated by the central nervous system (brain and spinal cord), which coordinates the functions of the bladder and urethra. The bladder and urethra are innervated by 3 sets of peripheral nerves arising from the autonomic nervous system (ANS) and somatic nervous system. The central nervous system is composed of the brain, brain stem, and the spinal cord.

http://www.emedicine.com/med/topic3176.htm

[janineerrn]

Hi,

I have a neurogenic bladder from POTS too. Urination is an autonomic function. I dont self cath yet, I sit down, pee a little, stand up, sit down ...... real pain. I have to be careful and go pee a lot to avoit a UTI. I could hold it til I explode tho lol. I didnt explore it too much with the doctors because I dont need to be poked and prodded any more and other than self cathing there is not much they can do other than a few invasive procedures to tell yuou you have a neurogenic bladder. Spinal cord injury is another cause but im sure i dont have that.

Good Luck

Janine

[Guest Mary from OH]

To all with Neurogenic Bladder:

My personal problem (most of the time) is that I am unable to go!! I will sit on the toilet for 20 or 30 minutes straining, very hard to try to urinate. I do not have any problems with incontinence whatsoever. Occasionally when my POTS acts up severely, I wil have some problems with near fecal incontinence, but never urinary incontinence. I have never been dx with a UTI. My GP thought I had a UTI (from the urine specimen results in the office) and started treating me for one and then the culture in the lab never grew.

When I gave birth to my daughter, I was in labor for over 58 hours of hard labor. I'm not sure if maybe something could have happened then. IDK. I'm so confused. POTS... MS...

I still need to go to my Urologist to discuss the results, so hopefully I can get more answers then. Can anyone give me some suggestions of good questions of what to ask??

I am going for a cervical MRI tomorrow afternoon.

[michiganjan]

Dear Mary,

I went through years of bladder ****. I had bladder pain--often I felt like I had to urinate right now! And often I could not go at all or only a little, in spite of the urgency feeling. There were a couple of times I could not go at all for an entire day and had to go to emergency to be catherized. Then I learned to self-cath, but have not had to really do this. I saw two different urologists. Diagnosis was "irritable bladder", possible interstitial cystitis but we did not do the biopsy for the interstitial cystitis.

Now my bladder works fine (I have a bit of retention, but then I had a 9 pound + baby 30-some years ago!). No urgency, no pain. Once in a great while I have a recurrance of not being able to go in a mild form and that is usually transient and caused by something I have eaten.

In spite of my frequent consultations with the urologist I was the one who finally figured out what was bothering my bladder. And for me it is a two-part solution.

FIRST PART: Nine years of bladder **** coincided with 9 years of coregard (beta blocker). Everytime I got off the coregard, my bladder got much better. Since then I have experimented with many beta blockers. I really need a beta blocker to keep my tacycardia under control. I have found that the pain, urgency, and inability to go will vary with different beta blockers. The only one so far that works without causing bladder symptoms is Sectrol. I have taken this one for several years now and it does not hurt my bladder.

SECOND PART: This one has taken many years of experimentation for me to figure out. There are some foods that will hurt my bladder, especially when it is traumatized from the wrong beta blocker. I worked off a list from a book on Interstitial Cystitis. Basically when my bladder acts up I stop eating any acid foods which includes tomatoes except yellow tomatoes (this means no catsup, pizza or spagetti sauce etc), citrus (try using Minute Maid low-acid orange juice), almost all fruits except yellow apples, pears, strawberries, and blueberries. The other foods to avoid are all nuts, chocolate and caffine. Spicy foods can also cause symptoms.

In my case I got well by first stopping the beta blocker (later finding a better one), which was irritating my bladder, then avoiding the above foods which would irritate my already irritated bladder for a period of many months. As my bladder healed, I was able to add back in the foods one at a time. The only way I can explain this is that not irritating my already irritated bladder allowed it to heal.

One thing I find I cannot do: I cannot eat spicy foods or caffine or many high acid foods. They will hurt my bladder within hours.

I hope there is something in what I have learned from my experience that will help you.

Hugs,

Michigan Jan (who used to live in Ohio!)