Misdiagnosed??

[ICtears]

So I'm nearly the end of month 5 since my diagnosis and I am starting to wonder if I was properly diagnosed in the first place. My doctor did the potassium chloride test back in September and she concluded that I had a mild reaction. She based this on a scale of 1-5 and anything over a 3 was considered IC. I said 2.5-3. She also told me that after a few months on Elmiron I was going to start feeling great. Now I have improved tremendously since this past summer but I wouldn't say that I feel great. I'm just beginning to wonder why she didn't do some of the other tests that I've read about. Does anyone know anything about this type of diagnosis? Could this be something else all together? I'm not gonna be able to get back to my doctor until April because of school but I'm gonna throw a whole list of questions at her when I get there. If anyone has any suggestions please pass them on.

[GriffsMommy]

A lot of dr's are using symptoms and the PST as a way of diagnoising. Some dr's don't feel that it is enough to go off of to diagnois a patient so then they do the hydro/cysto under anesthia. Each dr is different though. I had the hydro/cysto done because the dr I was seeing at the time said he wasn't sure I had IC until he had done that.
My current dr said he would have diagnoised me based on my strong symptoms and my strong response to the PST and nothing else. It just depends on how much you trust your dr and what tests you feel comfortable with getting.

[ICNDonna]

Elmiron doesn't always make people feel "great." However, if you are feeling better, I would say it could be what's helping. Most people will say that elmiron can take six months or longer before it really starts working.

I think all of us have at one time or another had doubts about diagnosis when we have periods when we feel better.

Warm hugs,
Donna

[traceann]

For me it was at least 8 months before I felt pretty good on Elmiron. It was about 3 months that I started to feel "better", certainly not great, lol. I have read and heard it can take even up to a year to feel the "full benefit", so it's certainly not a quick-fix. For me, that's where the diet came into play, it really helped me manage symptoms until I started to notice a difference from my medications.

I'm with Donna, I can remember when I seemed to back-slide or wasn't feeling as good as I thought I should, thinking it was the wrong diagnosis. But then, when I did notice improvements (I kept a voiding diary, it was a lifesaver, helping me to see even minor changes) I knew we had it correct...

I agree with Christine too, it's all about what you are comfortable with, if you want further testing, I suppose you could ask and see what your doc has to say! Keep your chin up - it will get better! :)

[alycat]

Elmiron does take a long time. While I do feel pretty good most of the time on it, it hasn't fully healed my bladder, I can tell. However, I've only been on it since June, so it's still taking its time; also though I can't take it exactly as prescribed (I have to take it with food or I get horribly nauseous), so it'll probably take longer to work in me.

If you're concerned about the diagnosis, you could try a Hydro/cysto. I found that after the initial pain of the procedure, I felt wonderful for several months. It can also definetly pinpoint your diagnosis. When I had the hydro done, both my gyn and my uro thought I had endo. With the hydro they were able to accurately see the damage to my bladder, and diagnosed me correctly and got me meds that actually made me feel better.

I wish you luck, and yes, throw as many questions as you can at your dr. If he knows your concerns, he can maybe do more tests to check them out.

[Cadyfatcat]

I thought the same thing a couple of months ago...I was questioning my diagnosis of IC because I started to see dramatic improvements when I got some good care for my pelvic floor dysfunction. I also started to eat problem foods without consequence.

I was also diagnosed with PST and read up about the possibility of it giving false positives...especially if there were different pelvic pain issues, like pelvic floor dysfunction for me.

So I went off the elmiron to see if it was really the elmiron that helped and IC that was the root of all my problems...got worse about a month or so after I stopped, tried some different things, and am starting elmiron again.

However, on a 1-5 scale on the PST, i was near a 5 in pain. So maybe go off of it for a while and see your condition deteriorates...supposedly if you are off of elmiron for a month or so and get worse and decide to begin again...you won't have to wait as long to see results.

[ICtears]

Thanks to everyone for responding, I really appreciate it. I have considered asking my doctor about a hydro/cyst just for my own peace of mind that I'm being treated for the right thing but I'm not sure yet. I still have a month or two before I see her so hopefully I will continue to improve. I just keep reading articles about all the things that should be ruled out before a proper diagnosis has been made and I haven't even heard of any of these things much less have been tested for them. I'm just gonna have to be prepared with an arsenal of questions. I'm just happy that I'm at a stable level for now. I haven't had any serious pain in a few months. It's more of a constant annoying pain. I mostly have urgency and burning. It all fluctuates though so it's hard for me to tell if it's the food I eat or just my body being strange. Maybe one day I'll figure out this bizarre disease. Thanks again to everyone!

Yes I do go to Penn State and I absolutely love it!