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How I Became Incontinent And Still Trying To Accept It.


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babykeiff my right arm was paralyzed for 5+ years and the stupid neurologists kept agreeing with the first guys assessment that i must have slept on my shoulder wrong and bruised my brachial plexus , each and everyone would say give it a month and it will be better,what they did not see was the CIDP destroying the nerve roots on the right side of my spine,what none of these brilliant Doctors didn't last thru was the 5+ years of agonizing pain in and arm and shoulder that was paralyzed but you wanted to stick in a meat grinder because it would probably feel better,and just before the arm reanimated about 8 months prior i found a specialist who could put a name on what was and is destroying my body.if i dyed the salt out of my hair, shaved my body hair and walked into a doctors office i could very easily pass as a 12-13 year old, my body is a wreck i used to be big very muscular and strong being an active firefighter you have to be and now i'm shrunken,but the whole reason for writing this is the degree of insult (Injury) to a particular nerve depends on how long it will take to regenerate and if i remember correctly its 1/16 of an inch per month on nerves the have been bruised and not Severed so its a long road home, and me myself if i was newly incontinent and trying to cope this is not the site that would be high on the teachers list-at the hospital i'm sure they gave him a list of manufacturers websites and chat groups that are all heavily moderated round the clock and are there for just those kind of people, so me personally i do not believe his post or his story i think he is trying to play on peoples good nature-thats just my opinion i could be wrong.

Nappy

Your situation is so similar to a lot of what I have seen - where one medical professional states an opinion, and every subsequent medical professional will agree to the stated opinion, and do noting to investigate / cure the problem. In your specific case, CIDP is an acquired immune medicated inflammatory disorder of the peripheral nervous system.... which means that YOU were given this disease as a side effect from some medication prescribed to you. I suspect, due to the arrogance of the original Doctor / specialist treating you that s/he is responsible.

For those who do not know what CIDP, it its where ones own immune system attacks the myelin sheath that surrounds and protects the nerve fibres. Without this insulation, nerves can't properly work, and eventually fail. Without a feedback to the brain (nerve impulses) their is no way for the brain to know in what state the muscle / limb is. Long term damage includes muscle atrophy. If, as in TDX_SP's case, this started in a limb, eventually to save the rest of the body, the limb will have to be removed.

CIDP, in most cases, is progressive, and incurable. The reason is that the immune key identification system has been chemically altered, and as such, your own immune system does not recognise you, so it will slowly kill you.

Treatment does exist, if diagnosed early enough where on partial myelin damage has occurred with little to no nerve damage is to use immune suppression, however, due to this only being a cure of the symptoms rather than the original problem, there is a fine balancing act of increasing the medication enough to allow the myelin to recover without significantly impeding the bodies immune system. Too much medication and the patient will have no immune system, to little, and the immune system will destroy the myelin, nerves and eventually the body. Since medication levels need to be slowly increased to be effective, there will be a point where the medication is no longer effective.

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Guest dragonmaster4066

i to am incon. due to an accident 13 years ago. mine was a motorcycle accident and i was t-boned on the left side at low speed. it crushed my lower left leg and sent me and my bike sliding and rolling 35 feet away from impact. i deal with my incon. with diapers and have found out through trial and error alot of things. i learned how to layer diapers to keep from soaking threw them at night so i wake to a dry bed even though i have very wet diapers on. i have also learned that i need more day time protection in the winter time verses the summer time. i can almost get away with out any protection in the heat of the summer. i figure its something to do with needing more hydration at that time of year because of swetting. i can go all day with a simple pull on type and even then some days when i get home its just a little damp. in the winter i have to use a regular diaper and change by lunch time unless i am wearing coveralls then i double diaper and that works good. mostly in this thread i just wanted to help make you feel like that are alot of us here that share in your situation and we do try to support each other here.

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Motorcycle accident here myself. Memorial weekend 1995 i was riding from ft. Hood Texas to Houston. Barely anyone on the road, single car Lincoln town car or some such decided I was passing the offramp they wanted, crossed three lanes of traffic and forced me off the road in to the back of a stopped semi at 60 mph. Lost and regained consciousness a couple of times. Have had neurological issues since then currently my visual field shaking back and forth throwing my balance off and giving me headaches is my present gripe.

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  • 1 month later...

I broke C6/7 many years ago. First managed my bladder w/ texas catheter and drainage bags. Irritations from them suct, so I went to using diapers soon after. Thankfully I was attracted to diapers growing up, I just rarely got to use them. Despite the inconveniences of no bladder control, my full time access to diapers and the fact that it's "socially acceptable" for a wheelchair bound person to use diapers makes me comfortable and able to enjoy them in other aspects.

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I too, had an accident witch left me, in the state I am today, I was in a motorcycle wreck, when a person ran a stop light and hit me head on. It took me a full yr of pushing my self everyday, never took a day off, to learn how to walk again, at first is was like being a child learning to walk again, all the nurses cheered and clapped the first day I got up and took my first four steps on my own, i still fell down but I did it on my own. i remember that day very well, i kept getting back up and trying to walk on my own, in a couple of weeks i was able to walk a cross a room on my own. I have no control at all over my bladder, and some bowl control, its been 10 yrs since my accident and I havent let it slow me down yet.

theres days i wish i didnt have to wear my diapers, like on very hot humid days, those just suck.

It has come to that its a normal thing to be wearing a diaper, like when i dont have one on for a good amount of time I feel wierd, i think its because my mind has learned that i need them and when they are not on me my mind nows something is wrong.

Hang in there dont let this slow you down, prove to your self that anything can be down,

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  • 7 months later...

I was cut off by an SUV while riding a pushbike. I ended up on the guys windscreen, and got thrown down the road 20 yards with all the force being dissipated up my spine, burst out my T12.

I currently have a flaccid bladder and bowel. I have no control of my bowels, but Im managing them with diet and emptying them manually every morning. This doesn't stop accidents but it helps. My bladder won't release on its own, and I've got to empty that manually as well with a catheter four to five times a day. I think Im getting close to the over active bladder that my urologist suggested would be the next progression. Im getting sudden feelings of being full, but still can't release. Diapers seem to carry so much of a stigma here. They suggested that they could treat it with botox, reverting the bladder back to not being able to release by itself! I've always had a thing for diapers, and had a pretty big stash leading up to the accident and I think I'd rather treat with diapers. The risk of infection from inserting something into your bladder that often just seems way to high.

Im in a chair most of the day, but I can walk around short distances which is great.

I've been lurking for years, mostly just using Daily Diapers for the stories and pictures. It took a long time before I stumbled on the forum. Id mostly been using aby.com for that sort of thing, but Im glad I found the forums here. There seems to be a lot of experience here, and hope I can make use of some.

Cheers!

Puggsley

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Puggsley, you'll find many here who sympathize with you, having their own medical continence issues. FYI, we try to keep a tight reign on this particular forum to maintain it only for those with Incontinence- there are plenty of other forums on this site for other interests ;) You can feel free to share safely here, asking any questions you may have, knowing that we'll keep things on topic for you as best we can.

Bettypooh

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2 years ago I was admitted to hospital with back pain and incontinence, they suspected Cauda Equina Syndrome and I was going to have an operation on my back, then I became partially paralysed and started retaining urine so was catheterised which was much better. I was then diagnosed with Guillian Barre Syndrome and was transferred to a specialist neurological unit where I stayed for 3 weeks. They removed the catheter and I was encouraged to gain bladder control. After numerous accidents I was given incontinence pads (Tena) and just left to get on with it, pretty bad really. I was in a wheelchair for over a year and have only just started walking properly very recently. I now have some control but suffer from stress incontinence so wear just normal tena pads that you can buy in the supermarket.

I am a DL too. but save those moments for when I am alone.

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  • 1 month later...

When I was 14, I had a lawn tractor flip and land on me. My back was bruised and it cleared up, but, I started having incontinence problems. I went to a chiropractor and he helped at that time! In the mid eighty's I had a mild stroke and lost some control, then in the mid 90's, I had open heart surgery! After this due to the trauma I developed Fibromyalgia and IBS. Now, I wear when on the road and also at work. I drive a school bus, and there are times when I just have to go, no pre-warning! I dont let the diapers and plastic bother me and have just learned to live with it! I am now 62 and I live a nearly normal life as possible and do stay active! I guess it's all in the attitude we take!

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