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Old 07-14-2013, 12:06 PM
Synnove Synnove is offline
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Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Synnove Synnove is offline
Member
 
Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Default 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
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