Can someone please?!!?....

[Morgan]

Can someone please explain to me how a potassium test is done? Can't seem to find it. I know they insert a catheter and instill potassium and if it hurts, you have IC? Am I right? Then they drain you and put pain med in..(heparin or lidocain, or something...) What I wanna know is your expereinces...from start to finish? And do they tell you when they're putting the potassium in..or do they just wait till you scream? (j/k..)thanks so much... <img src="graemlins/eek.gif" border="0" alt="[eek]" /> Kinda nervous....

[Christa]

Here goes. My dr put in the catheter which was painful enough. Then he put "something" in my bladder and looked at me face and said, "Well?" I said that it hurt a little. Then he pushed it out with his hand by pushing on my bladder. Next he put "something else" and I started screaming and told him that I will hurt him and him nurse. So he pushed it out and rinsed the bladder. I didn't have any pain meds. Next in another room with another catheter I had the bladder stability test. He said that if it hurts, then Elmiron can be useful for you. But as I wrote earlier, doctors don't all agree on this.

Christa

[Morgan]

Youch. I mean...I know it is going to hurt, or its supposed to. Not looking forward to it..that and I've never been cathed. So what was the first fluid they put in you? After the test they're starting me on elmiron and vistaril and a couple other meds...Thanks for replying... <img src="graemlins/blink.gif" border="0" alt="[blink]" />

[Flore]

Morgan:

I had a potassium test, but I was negative!

My uro put a catheter, he put lidocain so I didn´t feel it, at first he put saline, and I didn´t feel anything, after he put KCL and I only felt cold. He said I was negative in this test. After, I slept (I was in the surgery room) and he did a cyto/hydro and I had a lot of glomurations (??) so I was positive to IC

I hope you have the same experience than me

[Morgan]

Wow..Glad it didn't hurt for you. My doc said if the test doesnt hurt, then I dont have IC...What are your thoughts on that??
confused.gif

[Christa]

Mine hurt a lot and my doctor says I don't have IC because I don't have the spots in the bladder. Who knows? Not me, that's for sure.

Chris

PS I don't know what they put in first, but they didn't give me any meds after the potassium. frown.gif

[Morgan]

Well, then. One of you reacted to the potassium test, but has no bladder damage...and the other had no reaction to the test, and has bladder damage.

confused.gif

[lm2]

I just read in an article by Dr. Nickel found on this site that some Canadian researchers concluded it's not useful as a diagnostic tool. confused.gif Then it started to say another group challenged that but it got cut off...I'm not sure what it all means. One doctor gave me a "reverse" potassium test - he gave me stuff which was supposed to make me feel better and if it did, it suggested IC. It didn't...which scares me. confused.gif

[rnewman]

I dont think that this is usefull as a diagnostic tool: it depends- everyone's bladder is sensative to different things. I know that because I take different vitamin supplements and sometimes I hurt the next morning and sometimes I dont. It might be usefull for some- and even in some where pain is NOT caused, that does not mean it does not irritate the bladder tissue--

which could be seen if a cysto is done right afterwards.

I was diagnosed when I had a small bladder and two tiny "glomerulations" on my bladder wall. BUT we tried detrol adn everything first- when we decided it was nothing else, it was IC.

Also though, just so you know, lidocaine is a topical anestethic. It is used on children's skin before an IV is put in so they dont feel the pinch (Emla cream.) So, if this is used before KCL, you arent going to feel it even if it does irritate. Hope that helps a bit-
Rachel

[ICNDonna]

To my knowledge there are three methods being used to diagnose IC: One is by symptoms alone. The second is by hydrodistention under anesthesia, after other problems have been ruled out by testing. The third is the potassium test. Pain with the potassium indicates IC.

Not everyone will react the same to either a hydro or the potassium test. Some people who had IC ruled out by hydrodistention have later been diagnosed based on symptoms plus a positive potassium test.

Donna

[Christa]

Hi Donna-

What would you say in my case? I'm at a loss at how to interpret my results. So are the doctors. Cysto/Hydro normal but pain relief after procedure and high pain in potassium test. Final diagnosis ??? Crazy, isn't it?

Christa smile.gif

[Morgan]

Wow, Christa. I'm sure miffed! I hope you find some answers, soon! This disease affects everyone differently, that's one thing I have learned!

Now it is bugging me that my Uro said flat out if you don't have pain during the potassium test, you don't have IC. I had all faith in his views and beliefs about IC up until that! Maybe I should tell him what you all have said! <img src="graemlins/blink.gif" border="0" alt="[blink]" />

[ICNDonna]

If you are having concerns about your diagnosis, or lack of it, the best suggestion I have is to get a second opinion from a different doctor, who is not within the same medical practice as the current one.

Physicians don't object at all to this --- and they are willing to send your records to the doc you will be seeing for that second opinion.

Good luck,
Donna

[Jill L.]

Hi Christa,

One of the other posters here, I think had mentioned that her cystoscopy with hydro didn't show any abnormalities. I think once she had the potassium test she tested positive. She has been taking Elmiron and seems to be doing quite well on it. So to me, Elmiron would probably be of no help if IC wasn't the issue. So I think it's possible....It's so strange how we all are so different in all aspects of IC. This disease is so weird! But I do agree with Donna. If you're feeling unsure about your diagnosis by all means get another opinion and keep searching.

Jill <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Christa]

Hi all-

Thanks for the advice about the second opinion. I've been to over 12 doctors in Poland, Germany, and the United States. I have 12 different medical opinions and an empty bank account. And a lot of extra Elmiron (which I plan to donate to the German IC Foundation if I don't need it). I think that's one of the (many) bummers about IC. Finding out if you have it. Then you can decide what to do about it. Like many I've taken the backwards approach. Do something about it and see if it works. rolleyes.gif

Chris

[Christa]

Oh I forgot to mention this. I don't know if it is good or bad, but in Poland your medical records are your responsibility. That means that I have a copy and in some cases the original of every single test result, usg, x-ray, etc. that I have had. It's all mine! Like a little private gallery of my innards!

tongue.gif

[Morgan]

Christa -

Best wishes to you in hopes you find your diagnosis! *hugs* <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[Jim in San Antonio]

Although there appear to be a high number of "false negatives" with the potassium leak test, it does seem to predict who will have some success in future treatment with Elmiron, as reported in following article:

Urology. 2002 Mar;59(3):329-33.
"Effect of pentosan polysulfate therapy on intravesical potassium sensitivity." Parsons CL, et al., & The Elmiron Study Group. Division of Urology, University of California, San Diego, Medical Center.

From the abstract: "Potassium sensitiy test shows abnormal epithelial permeability in most patients with IC and a significant reduction in this permeability after successful pentosan polysulfate (Elmiron) therapy."

[Morgan]

Hey, Jim..

Thanks for the info! *hug* <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[peiti]

Morgan:

Hi, I had potassium test about 4 years ago. I was diagonsed of ic before that, but my urologist wanted mt to have potassium test to see if I am allergic to Heparin before Heparin treatment.
To tell you the truth, I didn't feel anything at all. I thought I would have been in so much pain. I didn't even know the test was finished until my urologist told me it was done.

[Morgan]

Thanks Peiti...
Do you have bladder pain?? Just trying to put 2 and 2 together. I've noticed a lot of you who HAVE IC had no reaction to the potassium. I'm scared to death I will be negative, as well, and my Uro is so set on Potassium testing in diagnosing IC.

[PeitiW]

Morgan:

I had potassium test 4 years ago and didn't have much pain at that time. About a year ago, my pain started and sometimes it can be very unbearable. I don't know if my ic is prograsive, but in terms of frequency, I use bathroom much less than my first onset of ic.

[Morgan]

Wow - I can't believe I am freaking out, so bad. I've had more people tell me that the test was neg for them, or that it's not a good way to diagnose IC, than not. Should I be worried? Should I tell my doc what I've learned on here...from actual patients? I'm so scared it is going to be neg! frown.gif

[Ratchada]

I guess i was lucky to have a doctor who knew how to make the diagnosis. After excluding other conditions with a CAT Scan and IVP he said I need the hydrodistenstion and cystoscopy and bladder biospy. It was all done at the hospital under anesthesia and I went home that night with a catheter because there was a fair amount of bleeding. The diagnosis was IC and was evident to me because of the photograph that was taken of the lining of my bladder. The ulcers were right there. I hope this helps someone who is fearing the procedure. I am curious to know how many of you who went through this got a picture with your report. Despite the fact my bladder looks terrible I am doing very well and Elmiron seems to have kicked in quickly, along with the Vistaril and 5mgs of Elavil I take at night. One word of caution - I am very strict with my diet. Finding a good doctor is key!

[Morgan]

I'm scheduled for a cysto/hydro, as well.