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chronic kidney infection, anyone?
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chronic kidney infection, anyone?

I was diagnosed with MS in 1990. Have always had urinary issues and been checked periodically by a urologist. Now I am having left flank pain and tenderness (without any of the other hallmark symptoms of an acute kidney infection). My Internet obsessive searching indicates this could be a sign of chronic kidney infection.

Does anyone here have chronic kidney infection (chronic pyelonephritis) as it relates to MS? The whole kidney damage/failure issue scares the snot out of me. I am a self-cather and thought that would keep me from getting this. But now I wonder if I have reflux leading to chronic kidney infection.
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335728_tn?1331418012
Hello jr and welcome to the Forum!  I would like to start by saying that we have no doctors on this Forum so we are not able to make any diagnosis.  We do have a retired physician who also has been diagnosed with MS that is a great help but the rest of us are either diagnosed with MS or something else or the rest that are sitting in Limboland waiting for a diagnosis.

I am very sorry for all trouble you are having with the possibility of a chronic kidney infection...however, I am not going to be able to assist you with this subject.  I will bump up your query to Quix (she is the retired physician) and I am hoping she will be able to assist you.  Apparently she is not feeling well right now so it might be a bit of a wait but there may be someone else that can help.  

I wish you all the luck in the world that this does not turn out to be what you think it may be and that you can continue on as is.  Please be patient for a response and keep in touch!

Lots of Hugs,

Rena705
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Thank you so much. I will wait for Quix's response. I hope she is OK.

BTW, I am thrilled to have found such an active and involved community to share stories with and commiserate about the roller coaster ride that is MS.

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231441_tn?1333896366
Hi JR,

Welcome.  Am sure you can add a lot here with your experiences.

If you suspect kidney problem you need to get over see your urologist ASAP, and work with him/her to make sure you get this under control and see what can be done to prevent recurrence.  Please go see your Dr.

Take Care

Sally
(not diagnosed with anything yet)

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285045_tn?1253644928
Hi,
I too have to cath...My urologist made sure I understood the damage that can be done in the urinary system due to the bladder not working right.  Like Sally above I would go on as soon as you can!  It is your health!  
I hope you feel better soon!
Syn
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Thanks to everyone for the good wishes and concern. I now have an appointment with my urologist for Jan. 28.

syndismilez, how long have you been cathing? I started in July 07, after an injection of botox to the bladder that was supposed to fix my incontinence worked so well that now I can't pee on my own. Ha! ("laugh to keep from crying" -- the MS motto).
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285045_tn?1253644928
Glad to hear you have an appointment!!!  I started cathing around May 2007.  I totaly hate it!  But it keeps me from having UTI's.  I have residual everytime I pee...ick. The UTI's were my first sign of something wrong.  I am unDx'd as of yet, one dr says MS second opinion is still in the air I suppose.  Wow I didnt know you could get wrinkels in your bladder!  Haha. Just kidding:)
Syn
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Yep, everyone does a double-take when I say I got botox in my bladder;). Botox is becoming increasingly common for spastic bladder. I wonder if anyone else on the board has had it.

Cathing is no picnic, I agree! But I guess it beats the alternative.

Man, it takes forever for the definitive diagnosis of MS to come down, doesn't it? Do you feel that from your research that is what you have?
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285045_tn?1253644928
Well, considering the limboland ups and downs, all in all I believe I do have MS.  My first MRI normal, 2nd minor periventicular white matter plaques, lumbar puncture normal... First neuro says MS, I am still waiting on the second opinion.  Then just as I was enjoying a little break in symptoms, my right arm started to not work just this past weekend! I couldnt use it for anything.  It is a whole lot better now....So that just reconfirmed my suspicions.  Lovely....
Did your Dx take long?  Mine in actuality has only been 1 year so far.  But I have had symptoms for around 3.  
Syn
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I have been self-cathing since 1995.  I could not empty my bladder without one. At that time no doctor had any idea I had MS.  I saw a gynecologist, a neurologist, and a urologist.  Each promised they could fix my bladder not functioning, but nobody could, so I learned to cath.  It was awful at first, but now don't think a thing about it.  I use it every time and just carry it around in my pocket.  I take maintenance macrobid and have for all these years and have never had another UTI.  I was diagnosed in 2002 with MS because I complained of severe memory loss and they did an MRI.  

I wish you lots of luck.  I'm new to this site too and very pleased to find others who share my experiences
barbie51
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Avatar_f_tn
I had symptoms for almost two years before I got the diagnosis. I had run back and forth to doctors for months and they basically had decided, I think, that I was just insane.

Thinking about that used to infuriate me. I mean, I was the right age, the right gender, the right race for MS to be at least a possibility. Why did it not occur to anyone? And my diagnosis finally happened at Duke University Medical Center, after a neurologist prescribed "nerve pills" (my mother's term) and basically told me I was a nut. If the diagnosis took that long at a premier hospital, I can't imagine what it must be like at less prominent institutions.

But I'm pretty much over it. I have heard many worse horror stories about diagnosis from folks with MS.

I hope you get an answer soon! I remember well those months of limbo waiting for a professional to confirm what I strongly suspected.
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Avatar_f_tn
Wow. That's interesting that your most prominent early symptom was urinary retention. Just goes to show you that MS can present in a million different ways.

So your doc doesn't have a problem with long-term use of an antibiotic? I am trying to convince my urologist of the benefits of that but no luck so far. Ha!

Good luck with the cathing and I'm sure we will be talking a lot on the boards. This place is great!

P.S. I must share my favorite pee joke. This is phonetic so you have to read it aloud to get the full effect. This joke is as old as the hills and you've probably heard it. But it never gets old for me;).

Here goes:

Q. If you're American when you go in the bathroom and American when you come out, what are you when you're in the bathroom?
A: European
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Avatar_f_tn
He, he!  Haven't heard that one in a really long time, back before I had peeing issues and gave it any thought.  Reminds me that I actually used to watch my dog and be jealous that she could pee so easily!  How crazy is that?  But I realize ordinary things can be a real blessing and thankfully, I still have blessings to be thankful for.  

I've questioned the docs, I've had more than one, and they tell me not to worry about long-term antibiotic.  If it ever quits working, they'll use another one.  Way back in the beginning, I tried going without it and had a UTI within days.  I haven't gone without ever since.  I hope you get good news from urologist on Monday.
barb
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285045_tn?1253644928
Loved that joke!!!  
Talking about cathing.... I call it my tinkle straw!!!  I just have to have humor to make it through all this!  I get a giggle every time I make a visit to my urologist... All the older gentlemen give me the funniest look!!  (I am 36)  especially when I went to his other office.... A prostrate cancer clinic!!!  Hahaha.  This rollercoaster ride has been crazy!  I'll just enjoy my limboland a little while longer till something hits my doc over the head!
hope all is well with everyone!!!
syn
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Glad you have docs that go with the antibiotic.

Thanks for the good wishes:).
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Ha! Tinkle straw! I will have to use that one.

Good story on the old guys in the prostrate clinic. A few years ago, my urologist prescribed me Flomax, thinking it would ease urinary retention. Now of course Flomax is indicated for older males with prostrate issues. When I presented the script to my pharmacist, he did a double take at me (a 35-year-old female) and started stammering questions.

Haha. The Flomax did nothing for me, BTW. Except make me a topic at the next pharmacists' convention, I'm sure.
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Hey, just checking on how your appt with urologist went today.   I hope you get some good answers.

Barb
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Welcome !
Well im not dx with ms just yet however its looking pretty much like  do have.
What i wanted to let you know is that i had been haing this lower back pain for some time and my neuro ordered m mri of spine. Well i was in the er friday due to the pain had bcome intolerable and they pulled my reults and i have a 5.0 cm mass on my right kidney! Im not sure if it has anything to do w/ms but i have my appt tomorrow w/neuro for results of all the latest test.
I will post tomorrow and hopefully have an answe for you.... at any rate i sugest getting an mri on spine just to be sure.
good luch
Cheryl
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Hurry up and wait as usual at the doc's! Glad he's thorough though.

Urologist today ordered at CT scan of the kidneys for sometime in the next couple of weeks. He says it might be reflux, but he's more inclined to think kidney stones.

We shall see! Thanks to all for the concern and I will update when I know something more.
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