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Discussion Starter · #1 ·
Back from Ultra sound

I was surprised that after emptying my bladder I retained 286 cc of urine. My Urologist last time I was that high diagnosed me with MS. Neurologist said no MS.

Now I am learning you can have bladder problem with Lupus. Lupus nepatis (sp) which will cause you retained urine. Twenty minutes later I was asked to empty my bladder again. Even after emptying my bladder the 2nd time I still retained 165 cc.

My Urologist said that if I continually retained over 100 cc to self catharize myself. I really don't want to do this but I am getting more UTI infections. So I guess I am back to self catharizing myself, no fun.

Yesterday I had 40 blood test done (9 tubes of blood were taken). Today the ultra sound showed urine retention, and I have kidney problems. What else it showed I am not sure.

My face, hands, are continuing to swell. Like I told my doctor I am also in lots of pain like 365 days of year 24/7.

Hoping for answers soon. I am going back to see my doctor October 31, not soon enough for these answers.

Hugs

Gerri
 

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Hi Gerri,

I am glad to hear they are doing further testing. Maybe once they get all the results back they will have a better picture of what is going on and start you on the appropriate treatment.

May your week fly by quickly,
Lazylegs
 

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Hi Gerri,

I too hope this week goes quickly and that you get some answers and appropriate treatment.

Did your urologist not explain about double voiding to you? I found it helpful when I was retaining urine. You go and then stand up for a second and try again, you seem to get a more complete emptying then. Certainly helped me. I was fortunate enough not to get a string of UTI's I think my Lupus was so active it never let any germs take hold.

love
Lily
 

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Lily, you bring up a good point. If our immune system is overactive, why would anyone get UTIs? Is it because the meds are suppressing the immune system too much? In that case, lowering the meds help? I don't currently have UTI problems, but I know many lupies do.
 

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Hi Jesse,

I was really speaking prior to medication when things were out of control. Even now I think now in my case my meds are pretty well tailored and I'm not suppressed too much but just enough to control the Lupus in the most part but not let bugs get hold.

love
Lily
 

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I see. So I guess having an overactive system doesn't help with the kind of bugs that start UTIs. It would be nice if there was at least that small benefit. Thanks for the information.
 

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Our immune systems aren't really overactive - they are malfunctioning. It's more that if you already have one thing going on, the autoimmune disease activity in this case lupus, the immune system's resources are less capable of dealing with anything additional.
The autoimmune disease provides an opportunity for infections that would otherwise be more readily resisted, in much the same way that bacterial infections often follow viral infections.

HTH
Clare
 

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Now I'm getting confused, but I'm having some brain fog right now so that may be the problem. During the past few years when I started with the AI symptoms, those were the years when I no longer caught colds, viruses, bronchitis like I used to, ect. I wasn't sick a day for several years, while everyone around me was coughing and sneezing. My understanding was that because my immune system was overactive, my body was not only fighting itself, but every bug that tried to get me. I also thought that one reason we are more suseptible to infection while being treated is because the drugs suppress our immune system and if the proper balance isn't there, we are more prone to various infections. MY RD said the drugs shouldn't suppress us so much as to make us more suseptible, just make it more like a normal immune system, but it's tricky to get the right balance.

Now, what you're saying does make sense to me, kind of like the pick-pocket stealing your money while you're being distracted by his accomplis, but the two scenarios seem to be different. Please believe me, I'm not trying to be contrary, I'm just confused at this point and it's important to me to understand what's going on. I thought I did, but now I'm not so sure. Duh.
 

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Gerri, I hope you find out what is the problem. I have Lupus Nephritus. My doctors didnt realize my kidneys were not functioning so they kept loading my up with Lasix so i would go pee more often because i was not going at all. Then i ended up in the hospital w/almost complete kidney failure. So dont stop pressuring the doctors for answers. It's your right to know what's going on. Make sure your kidneys are functioning, are you going to the restroom? Do you have a nephritus doctor?
 

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Discussion Starter · #11 ·
Hi lazylegs, Karol, Lily, Alisiajo

I am not feeling too good, so I haven't been here answering anyone, sorry.

I see my doctor this coming Friday for the results. I am still having problem with hesitation, not completing, and pain when I first have to go, so I wet myself.

Last bladder/Kidney infection I didn't even know I had an infection, until doctor came back and said he needed to put me on anti-biotics. The only one I can take because of allergies is macrobid. It's funny not many people can take it.

I am trying what Lily said to do, stand up for a bit, and sit back down to complete urination. It seems to be working.

I had a Urologist over a year ago, but I moved from the area and haven't had a Urolgist since. I guess after the test get back to the doctor he will be setting me up with one here in my local area.

Hugs

Gerri
 
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