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PostPosted: Sun Nov 27, 2016 6:01 am 
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It has been a frustrating several years. So many false hopes for finding out what is going on. A lot of second guessing myself. Some guilt thinking maybe this is all in my head.

But after having a recent MRI it confirms I have something going on in my low spine. I keep complaining that my problems come and go. And that is super frustrating in itself. I can go see the dr when I am experiencing a problem but by the time I have an appointment for a specialist my symptoms have subsided only to return a few weeks later. But my MRI does show scoliosis, herniations, deterioration, and modic changes type 1. I had never heard of modic changes before. Apparently they are only visible in an MRI but are evidence of frequent herniations. They also suggest infection and inflammation. None of which surprises me because when my symptoms are bad I feel very sore, stiff and swollen in that area of my back, it feels like having the flu in your low back.

So I'm finding that I am getting a lot of nerve pain at the same time I am experiencing bladder and now bowel issues. They didn't find any stenosis this time, but that doesn't mean the nerves don't get trapped or pinched when there is more swelling. My symptoms were very slight when I had the MRI so i suspect the swelling was also slight. That was a month ago.

I get numbness in my saddle area when I sit. I also get pain in my leg(s) and soreness and sensitivity in my right testicle. I thought there was a problem with my testicle but now I think it is the nerve servicing that area that is getting pinched and inflamed. I used to just get retention and urge incontinence. Now, whenever the pain is at its worst, I get fecal incontinence.

I think it is the pudendal nerve. It matches my symptoms to a t. It is worse when sitting and relieves when standing. It causes urine retention and fecal incontinence, the scrotal are becomes numb and tingly, I also get sharp pains in that region.

Hope my dr doesn't just shrug this off as a self diagnosis by interweb. I've been searching for the last several months for a condition that matches my symptoms, rather than looking for symptoms to match a condition.

I'm getting other nerve related problems all over. Burning, prickly, stinging sensations in my feet, ankles and legs. Numbness in three fingers of my left hand, numbness in two fingers and my thumb in my right hand, pain and tingling in my arms. Drop foot that comes and goes with severe pain in my leg(s). Problems swallowing. Burning sensations in my knee. The list goes on and on. It is no surprise then that my bladder problems would be stemming for nerve problems.


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PostPosted: Sun Nov 27, 2016 2:03 pm 
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Hi, Once Upon A Time. You may have visited the issue in the past, but your last paragraph above suggests to me that you may have type 2 diabetes. I'm diabetic and have the numbness, tingling, and foot drop as well. In addition, I had a diabetes-related stroke and (temporarily) lost my swallow function and needed a feeding tube. I regained my ability to swallow (and also my ability to walk, plus most of my fine motor skills) after lots and lots of PT. Please make an appointment with your doc to at least rule diabetes out. If you're already treating for diabetes, please work with the doc to get/keep it under control.

W.


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PostPosted: Sun Nov 27, 2016 3:24 pm 
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Certainly, see a neurologist.

It's not that a neurologist can pin-point the cause and advance to treatment quickly...it's more a matter of
working with him/her and being given tests to RULE OUT a number of the known causes first...such as diabetes.

Eventually, the causing conditions can be narrowed down and your case may even be termed 'idiopathic'
(cause undetermined) as mine is, but still RULING OUT some of the more common other causes.

Now, there can be a base line established, and the medical people work from there, step by step.

Often, patients are put off by this 'ruling out' approach. It seems to work backwards, but it is an effective
clinical process that serves to narrow down the possible causes in each individual. I found a sigh of relief, for
instance, when my symptoms (much similar to your's) were evaluated and I was told the cause is NOT
DIABETES. Idiopathic, yes...but I'm NOT diabetic, nor even tending in that direction. Whew!


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PostPosted: Sun Nov 27, 2016 3:42 pm 
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I've been tested for diabetes several times, I get tested at least twice a year. I've suspected it but the tests always show I have normal blood sugar.

I should mention my sister has similar nerve problems, she was diagnosed with stenosis.


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PostPosted: Sun Nov 27, 2016 6:41 pm 
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Joined: Sat May 03, 2014 8:08 pm
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Location: York, Maine
Wetters, it's nice to see you posting on the boards. I haven't seen you on here in a bit!!


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PostPosted: Mon Nov 28, 2016 12:38 am 
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HI, PB&J, and thanks. I'm happy to see your posts as well. I shrugged off the warning signs that came on about a month and a half prior to my stroke, and I felt the need to give Once Upon A Time a heads-up. Happy Holidays.

W.


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PostPosted: Mon Nov 28, 2016 5:14 am 
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Wetters wrote:
HI, PB&J, and thanks. I'm happy to see your posts as well. I shrugged off the warning signs that came on about a month and a half prior to my stroke, and I felt the need to give Once Upon A Time a heads-up. Happy Holidays.

W.

Dear Wetters,

Thank you for your advice, it is good advice to check. I get your point about 'shrugging it off' However I have been tested for diabetes and I do not have it.
I have also had MRI's which show damage to my low spine. I have a hereditary trait in my family that gives some of us narrowed nerve tunnels.
So thank you for your concern, really, but I think I will trust the blood tests that show my blood sugar is normal, MRI's that show my spine is not and family histories.


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PostPosted: Mon Nov 28, 2016 8:15 am 
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Joined: Sun Aug 09, 2015 1:07 pm
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Location: Midwest
Once upon a time,
The spine is a very touchy area, any pitching or swell there can cause a lot of issue. I have major nerve issue and I have a Stem plugged into my spine to control pain and my bladder. All the advice listed above is all good stuff. Wetter good to see your back, I took a break myself.


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PostPosted: Tue Nov 29, 2016 1:44 am 
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Thanks mlhjr, I'm finding out many of the symptoms I've had over the years that seemed unrelated are likely rooted in the same cause. I've had testicular pain that I thought was epididymitis. Swallowing problems. etc etc.

But I have also had several issues with my spine, some from hereditary degeneration. Some from misuse such as heavy lifting. And some from a few accidents, vehicle, falling, bicycle, snowboarding, etc.

Now I have to be careful what position I sit, where I rest my arms, etc.

I never suspected that sitting was causing or could cause my incontinence. It was humbling having to deal with urinary problems, but those were mostly retention and urge, I still had a fair amount of control most of the time and was aware when an accident was occurring or was about to occur. These new problems are much more advanced than I had bargained for. I have no idea some of the time that anything is happening down there now, sometimes I just feel an odd sensation followed by a feeling of being soiled. Now I am concerned how far this might progress.

I've already stumbled a few times standing up from sitting, I can be numb in the saddle and my leg can just fall out from under me. It doesn't happen every time, or even every day. Some days I can be okay, not entirely without pain but tolerable. Other days can be very painful and I can experience more 'accidents'. I used to go without wearing once in a while, and felt fairly safe, but now I am afraid to go without protection for any length of time, especially when I leave the house. A good day can become a bad day in the matter of minutes. Like if I sit in an unpadded chair.


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PostPosted: Fri Jan 13, 2017 4:26 am 
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Once upon a time,
I have gone through a lot of tests here recently. One of them was a fluoroscope. where they can see through your body. They discovered that my tailbone was twisted. Now you may say what does that have to do with this!!! The nerves to the bladder and the bowels come out the same place S-1 S2. Then they branch to go front and rear. I had an Medtronic Interstem put in last week.It fixes the nerves that effect our bladder and bowel. It's attached to the saddle and the nerves down there. I had a very weak bladder, I've had a few bowel events, not many. The Interstem takes care of both.
You will need a Neurologist's help. Not a urologist.

I have neuropthy, not Diabetic My toes are curled, my leg muscles were shrunken . I fell hard on the ice and landed on my back.
That was my start to all of this

First I had prostate problems. I waited too long to get help and was forcing out urine. That was messing my bladder up. Then I had a TURP. That relieved my problem for a while. But I started having to go every 2 hours, then every hour. I was using Catheters without any effect. Then I started having high PSA numbers. After some tests, I had the beginnings of Prostate Cancer
So my prostate was removed, and I was placed into a Foley. Also I found out my neck was caving in, so I had an operation and C2-6 were fixed. That relieved a lot of nerves in my body. It restored my leg muscles and arm muscles, I could straighten out a crippled hand again!!

I finally had enough and asked my Neck Surgeon if she could fix me. She told me to find a Neurourologist. I did !!!


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