I'm going Crazy!

[lissababy]

My doctor diagnosed me with IC several weeks ago or so I thought, then today I call him and he says he no longer believes that's what I have!

I am in so much pain and now back to square One!

AAAAAAHHHHH!:rant:

I don't know what to do! I've been through so many tests and I don't have health insurance yet because I haven't found one we can afford!:mad:

Any Advice? Please HELP!

Melissa

[lisabar36]

Hi. I was wondering what test did the doctor use to diagnose you? I would feel confused to. :confused: Did you ask him why he no longer believe its IC? I would talk with him and sometimes it never hurts to get a second opinion. I know you said you don't have health insurance right now. If you have a hospital nearby, you can call and ask them if they know of any free clinics. I live in Pa and most of the hospitals offer free clinics to uninsured. I don't really know the details, or income guidelines, but maybe its worth checking into. I hope you get some answers.

[ICNDonna]

You might want to find and purchase some insurance before you go for a diagnosis with another doctor --- since you already have a bladder problem, it can be impossible to have your condition covered unless it's under a group plan.

How were you diagnosed?

Donna

[lissababy]

Thanks ladies,

I've been trying to reach my urologist and we keep missing each other.
The tests I've had are everything from a pregnancy to CT scan and blood work.
It was after that that they decided to diagnose me with IC.
All of my tests came back normal. They gave me a bladder spasm med and told me we might need to look into diet changes.

Then I call them a few weeks later and am told that my tests revealed no signs of IC, even though I am experiencing almost to a T the symptoms including horrible pain!

So, now I'm on pain meds but back to square one in figuring out what's causing it.

As for my health insurance, I am in the process of trying to gain it!

Any Advice?:confused:

[Mothergoose]

Most people have a cysto/ hydro for diagnoses not always, but I don't think it shows up in test you mentioned, maybe they just ruled out other things.
See if you can find a uro who knows about IC, call offices and ask if they do I did before I made app.

Mothergoose

[justice4j]

Lissababy,

You might want to wait like Donna said doing to much more diagnostic labs etc., before you obtain insurance. You'll be branded as pre-existing because the information goes into a data "bank" called Medical Information Bureau. If you've applied for insurance within 2 years, all that prior diagnostic work up is available. Google the MIB typed out and you can learn about it.

Next, when you get your insurance, see if you can get to a urologist who can do a Potassium Sensitivity Test, sometimes called the "Parsons' Test."

It's pretty simple. They just catheterize you and add a small amount of a potassium solution to your bladder via a syringe attached to the catheter. If you burn from the test, they immediately withdraw the solution by pulling back on the syringe. Then, they quickly add a rescue instillation which took the pain away completely for me.

A good hint is to ask them to use Lidocaine jelly on the smallest catheter possible.

On my rescue instillations at home, I only use a #8 catheter, which I believe is pediatric sized.

Good luck!

Also, if you have burning feelings in your bladder or urethra,, try putting about 1/2 tsp Baking Soda into about 6 oz. of COLD water with ICE CHIPS. It doesn't taste so bad that way. It may relieve the burning in about 20 minutes or so.

Good luck with all this.

[aynjul]

Your doctor could be doing you a favor by not diagnosing you yet. After you get insurance request the Potassium sensitivity test. Most insurance policies have the clause to not accept pre-existing conditions unless there has been no gap in coverage. Typically the allowable gap is 3-6 months and your previous insurance should have sent you a letter of coverage stating when your coverage ended.

Don't let it stress you out even worse because it will put you in more pain. I hope the doctor at least gave you something for what you are feeling and it helps a little.

Good luck!