I have a question, if the potassium test doesn't burn or hurt me, does that mean I don't have IC ? Or can you still have IC and not have a sensitivity to Potassium? I'm just unclear about this, and the Urologist should be calling me today to schedule this test because I have the classic IC symptoms
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Potassium test, what if It doesn't hurt?
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From what my uro told me, some people who have IC will not respond to the test and some people who don't have IC will respond to the test. If it doesn't come back with a positive result but you have all the symptoms then your uro should be looking at different ways to diagnois you.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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Oh, so a person who doesnt even have IC could have a potassium sensitivity? Odd... so then why do they even use it I wonder ? Otherwise I have been tested for everything under the sun up to this point and its all coming back fine so this is where I have landed, at the Urologist's office. By switching to an IC friendly diet, I have greatly reduced my pain. But he wants to torture me more just to say he covered everything. I had a scope with a different Urologist who just looked in there with water and said everything looks great. Lovely. The scope actually really hurt! So I'm really dreading this for more than one reason.Comment
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This is not nearly as bad as the scope. My uro doesn't do the PST my gyn did. My uro was saying he didn't think it was the best test to diagnois because some people w/o IC might respond if they have irritation from something else.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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I can only speak from my personal experience. That scope in the office was KILLER. It was so painful. I was bawling. He didn't see anything. He said go see an IC specialist. I went there, they heard my symtpoms and said I have IC, but they wanted to do the potassium test to confirm it. That test burned like crazy. I held 40cc of saline before I thought I'd burst (had to pee so bad). She said that if I got up to 40cc without feeling anything different, IC was not likely. Well... she didn't even get in 5cc before the burning and need to pee hit me. It was aweful. From what she said, if I felt something, I have IC. If I didn't, they would have to explore other bladder issues.
I hope this helped! (Oh and for that test they used a regular cath... HORRIBLE. For my instils, they use a pediatric cath. and that is so much better).
Oh, so a person who doesnt even have IC could have a potassium sensitivity? Odd... so then why do they even use it I wonder ? Otherwise I have been tested for everything under the sun up to this point and its all coming back fine so this is where I have landed, at the Urologist's office. By switching to an IC friendly diet, I have greatly reduced my pain. But he wants to torture me more just to say he covered everything. I had a scope with a different Urologist who just looked in there with water and said everything looks great. Lovely. The scope actually really hurt! So I'm really dreading this for more than one reason.[SIZE="1"][B]Be well, Alyssa :hi:[/B]
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Yikes, If nothing else I've learned here, its to ask for a smaller catheter. The regular one used on me in the first Urologist I saw, hurt like heck. I was really in pain! And then the pain continued the rest of the afternoon! So thanks for that tip everyone! I will certainly request it when they schedule my exam.
I still have to ask, rhetorically speaking, why do they do this potassium test if its not a guarantee of an IC diagnosis? It seems cruel to torture us with the burning pain and mental anguish if its not a definate sign of IC....Comment
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I'm sure that the dr that is doing it thinks that it is a good way to diagnois IC and think that it only will hurt if you have IC. My gyn did the PST it hurt and they said I had IC. I didn't feel like the gyn office was doing enough for my IC and didn't really listen to my requests to try meds that I had read about here. When I went to the uro he told me he did not use the PST to diagnois because HE didn't feel it was the best way to diagnois, that's when he did the in office cysto and then the hydro/cysto.
There is so much that dr's still don't know about IC drs have a lot of different ideas about the best way to diagnois. I know I read that one uro didn't even do the PST because he didn't think it was needed. This uro went based on symptoms and ruling out all other causes.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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ok, so different doctors have different ways to test and they all have different ideas on this illness... Yeah, my GYN basically said there was nothing more he felt he could do for me and told me he thinks I have IC and to go see a Urologist. He basically sent me packing and didnt even attempt to try to help me any further. I guess its not his area of expertise, even though I feel that the pain and other misc problems like possible pelvic floor dysfunction may be part of my problems. Do your Urologists help you with GYN related issues like Pelvic Floor dysfunction? Or do you see your GYN for things like that???Comment
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I go to a urogyno who specializes in pelvic diseases. He (and his PA) specialize in IC and are passionate about finding the best treatments, going to conferences, and following up closely with the patients. They have a PFD specialist and PT there and they treat incontinence as well.
I would really shop around and find the best place in your area. I was referred to this doctor by my gyno (the urologist didn't know much about IC, nor did the other uro's in his office, biggest office in town). I asked my internist about this IC specialist and she said she would not see anyone else. I said there was a month long wait list and she said he's worth the wait. Well, when I talked with them, they heard my symptoms, and the PA started tests and treatments a week after I called. I see the actual urogyno next week!
I hope you get help soon![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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borntoswim,
A urogyno... thats interesting... I will have to ask around. I am happy with my treatment at my new Urologist so far but have only been there once. I think after they perform some testing, I will see how I feel about my treatment there, but that is a super suggestion if I am unsatisfied I will ask my family DR for a recommendation. You don't happen to live in PA do you? I would love to find out your doctor is in my townComment
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Yeah, I never knew there was a speciality called urogyno! This office focuses on IC and it is their passion. I am very lucky to go there. Sorry that I'm not in PA! If you ever move to Florida, I'll give you their name! Go Gators![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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Why do Doctors not always use a Pediatric Cath.? It is like Saline Solution for contact wearers. Do I want regular solution or the sensitive eyes kind? No I want the acid kind that feels like brillo pads so I hurt like hell all day! I don't get it. My URO says the Potassium test is very unreliable. I think many Doctors do tests to cover themselves from law-suits on down the road. I Pray every day for a cure. ZiggyComment
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Why do some doctors diagnose IC based on symptoms without any tests?
Why do some think the potassium test is unreliable? When I hear that I wonder if I have IC or not (because my in-office cysto was normal, except for the pain and the potassium test they said was a strong positive).[SIZE="1"][B]Be well, Alyssa :hi:[/B]
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