Misdiagnosed??????

[indiana]

I read the message boards everyday hoping to find someone with my exact symptoms. I know that that is almost impossible though. Here's my problem......

I am not 100% sure I have this disorder. I went and purchased Dr. Moldwins book, "The IC Survival Guide" and I seem to find more things that I don't have than I do.

I don't have pain with intercourse (thank God), I don't have the pain and the burning constantly like a lot of you do, I feel so bad.......I sometimes sit and read here and feel like I'm not "worthy" to be on your site because I don't hurt as bad as you guys seem to. But, could I still have this?

if you recall, I had the in-office cysto last Tuesday and on that plus symptoms of reoccuring bladder infections, peeing 3-4 times a night, my Uro determined that I do have it. I don't have the PFD, I don't have VV, IBS, etc.

Does anyone out there have the same mild symptoms as I do? Should I demand that I get the cysto with hydro? Is there any draw back to having this?

I just feel that I should be a 100% sure that I have this before I go down a road of medications that could make me lose my hair, thin my blood, etc.

I am definitely going to get a secnd opinion, my step-son sees a Urologist for night time wetting, it's a male Urologist, maybe I'll see him. He is in the same practice though, do you think I should seek out an entirely different practice?

Is there any of you who have the mild symptoms that I do? I'm so confused. :dizzy:

[twiggy]

My uro said people have mild to severe IC. I know my own symptoms vary. As for pain, each individual feels it differently and handles it differently. To me, it sounds like a spectrum disorder. There are many different levels and extremes of the disease. Many diseases are like this.

[SaraJ]

Well, I know for sure that everyone is different. I have had endometriosis, DUB, pelvic congestion syndrome & reoccurent cysts. (all gone) I have pudendal nerve entrapment, pelvic floor disfunction, and IC. My main systems of IC are bladder pain (mostly in my lower back) and frequency. I also have urethral spasms which causes pain when you get down to that last little bit and stop. Through all of this I found out that my main problem is actually some type of spinal cord disfuntion - and I am going to have the spinal cord stimulator done. My doc thinks this will be more effective than taking a ton of meds and doing bladder instills(they cause my urethral spasms to triple). I think - if I understand my doc correctly - that most of these conditions occur over a period of time. Also he said if you are in soooo much pain from one condition - like endometriosis or Lower back pain - until you free up those spinal cord nerves from those pains (which I did) you can't always tell how bad it hurts. With each surgery I had - I instantly felt great but after a couple months went back down hill. He said that it wasn't a new condition but I had freed up my spine to feel the other pain. When I started wiht the IC all I had was frequency. Now that I have had all these surgeries My IC seems more severe, but my doc says it's still the same I can just feel it for the first time ever. Hope this makes sense to you. I wish you all the best and don't ever minimize your pain to make others understand it. I have found unless you are going through it, you don't know about it!

[Sarojini]

There are many people out there who have very mild IC -- perhaps a little frequency and urgency, and absolutely no pain. If you are one of these patients, that is GREAT :) Well, not great that you have IC, of course, but that you have mild symptoms that you can easily manage :)

There is indeed a spectrum of symptms with IC... some are mild, others are moderate, and some are severe. Some have intermittent symptoms, and some have constant ones. Some have pain, some don't. IC is one of those weird things that's different for everyone... and it can even change from day to day in the same person. Mine started with frequency and urgency only, but progressed to pain later... I have moderate to severe IC according to my urologist.

If you're mild, you may not want the cysto/hydro. However, it will likely give you a more definitive answer as to whether or not you have IC, which, from your post, it seems like you would like to have. The cysto/hydro will give your doctor a good look at your bladder and he'll likely be able to classify you as having mild, moderate, or severe IC based on how many pinpoint hemmorhages he sees, or if he sees any ulcerations or scarring. Keep in mind though, that that is just an observation of a doctor... it may not have any relation to your symptoms. Some people can have what looks like mild IC during a c/h, but have severe symptoms of pain, and others can have ulcerations and severe bleeding and be able to deal with the disease fairly well without much intervention.

It is SO individual it's downright frustrating sometimes!

[ICNDonna]

I don't have anything to add here, other than to suggest that if you plan to go for a second opinion, my suggestion would be to see a doctor who is not practicing with your current one. However, before taking that step, I think it would be a good idea to discuss your concerns with your current uro.

Most IC patients do feel good with treatment. I function normally most of the time. I am fortunate in being one who is helped significantly by hydrodistentions and monthly DMSO treatments.

Sending encouraging hugs,
Donna

[indiana]

You guys are great! I appreciate all the input. I tend to rely on you guys for a lot of my questions because you are more available to me than my dr. I'm sure you all experiene the same thing. I can't drop my dr. a quick e-mail and get a response! haha

So, this disorder can be progressive then? I understood it that where ever you land with our symptoms is where you'll be, no progression. Am I wrong? If so, that really stinks!

[Annie2]

Indiana,

The vast majority of people with IC do not experience a progression of the disease and, with treatment, go on to live very normal lives. Many can control their IC with diet alone and some only have to limit a very few foods. For every person posting here, there are hundreds more who are not posting and only come back to these boards occasionally as they are busy getting on with their lives.

Yes, IC can progress, but the percentage of people who experience progression is actually VERY low. As the others so well explained, the symptoms experienced by IC patients varies greatly from very mild to severe.

I am glad to hear your symptoms are not severe. I agree with the others that if you are uncertain about the diagnosis you received, you might wish to consult with another urologist. As you know, there are 2 tests currently used to diagnose IC. The 1st, and most common test, is the cysto / hydro. Some urologists, however, prefer to use the Potassium Sensitivity Test. As you have a copy of Dr. Moldwin's book, you can read about it there. Perhaps the potassium test would be a less invasive test you might want to consider and discuss with your doctor.

[tigger_gal]

I really don't have thing to suggest, other then what everyone else said.. except I would go for the second opinion.. I really have a hrad time believing that an in office cysto, can show IC. I had an in office cysto by my "old" uro, and he said there was nothing wrong with my bladder, but, he'd do a cysto any way.. then I found out that my bladder only held 350 cc's under sedation with much distress.... he actually told me there was no meds and to learn to live with it... got a new uro right away...
sending you hugs and best of luck
Brat

[indiana]

I did have the Potassium test and I reacted to it. I guess I need to get out of denial, huh?

I just went to the grocery store, that was a treat. If I have understood everything correctly, I should basically eliminate everything except what I know is ok, then slowly bring things back in. I say this as I just finished a vanilla ice cream cone from the corner eatery! :lmao:

Basically, I've eaten the same thing everyday since Tuesday. 1 cup of oatmeal with a half teaspoon of brown sugar and 1% milk for breakfast, then a Wendy's Chicken strip salad for lunch (I removed the tomatoes and the onions) and I used the ranch dressing sparingly. No dinners.

So, the ice cream cone was new, we'll see how that goes.

I have to admit, taking way my tomatoes and my wine was a huge hit to me, I can't imagine not even being able to have ice cream! :yikes:

[Katrina]

Many people have mild IC....you only catch them on them on the board when they first get diagnosed...or flare sometimes....that is why so many of us on the boards seem to have it bad...but that does not mean there are not a lot people out there with mild IC. I had the potasium test and screamed....nurse said no one had reacted that bad in a long time...but other did react more like you. I know taking so much out of the diet sucks!! I have grown some low acid tomatoes and am trying to figure out what I will eat...probably just beef and the "home made tomoatoes sause" to test it out. I hope you have good luck with your treatment and self help things!

:grouphug:

[Annie2]

Indiana,

Are you doing ok with the Wendy's Chicken Strips? By itself, chicken has almost no flavor. Restaurants are in the business of selling flavor. Therefore, finding IC-friendly chicken in a restaurant, especially chain and fast food restaurants, is VERY difficult. Almost all restaurant chicken is marinated and highly seasoned to create flavor.

I went to the Wendy's site and checked the ingredients for their Homestyle Chicken Strips. Here is what I found: Chicken Breast with Rib Meat, Water, Modified Potato Starch, Salt, Sodium Phosphate (emulsifier), Breaded with: Wheat Flour, Water, Rice Flour, Salt, Modified Corn Starch, Sugar, Spice, Leavening (Sodium Bicarbonate, Sodium Aluminum Phosphate), Dextrose, Onion, Garlic, Chicken Broth, Autolyzed Yeast, Maltodextrin, Natural and Artificial Flavor, colored with Paprika, Lactic Acid. Cooked in: Partially Hydrogenated Corn and Soybean Oil. Those chicken strips contain onion, paprika, lactic acid and are full of MSG (a real bladder burner for most of us). MSG is not listed in that list but Autolyzed Yeast, Natural and Artificial Flavor are terms often used on labels that also can mean MSG. Plus the chicken broth listed in the ingredients likely had more MSG and who knows what else.

Most of us do ok with vanilla ice cream so I would guess if you are having symptoms after your lunch, it likely would be from the chicken on your salad as well as the little bit of salad dressing you used. When trying to start the IC diet, it is best to limit yourself to homemade things so you can control every ingredient you ingest. Later on, after you know your own personal triggers and tolerances, you can expand your diet to include things you know are safe for you. You'll quickly get the hang of it.

:grouphug:

Annie

[vm]

I have mild IC. You can click on my story in the link below my name to see if the symptoms seem similar to yours. The story is a bit outdated, I am doing better than I was back then. :)

[indiana]

Your story gives me hope! Thank you so much. I did find one food today that bothered me, HoneyDew. I love that melon but my bladder obviously doesn't like me.

I'll keep trying!

Thanks again.

[lindy lou]

Hi Indiana,

I was dx about 6 weeks ago. Still can't believe it was more than a UTI since I had mild symptoms also. In fact, I thought it was just a flare of a condition I had been dx with 20 years ago, trigonitis (also thought to be a bladder inflammation). Maybe it was mild IC all these years and I didn't know it. My symptoms were mild, frequency and urgency, last fall and I thought it was just post-menopausal stuff or diabetes. My regular doc did some tests and found some crystals in a urine sample taken to check for diabetes. I was referred to a uro, thinking it might be the beginning of kidney stones. When I described my symptoms of frequency and urgency as well as discomfort after voiding, the uro started me on Detrol LA for overactive bladder. One month on the Detrol didn't make any difference and on the second visit, he mentioned it might be IC. I had the cys/hydro and that confirmed it. The hydo must have put me in a really bad flare because I was a real mess for almost three weeks after it. I couldn't even sit or stand without considerable pain. Did not sleep more than 3 or 4 hours a night.

I really feel fortunate that my uro caught this early and has started me on Elmiron and Elavil. He just added Vioxx last week as an anti-inflammatory. I have improved with the diet and meds so I can say, I am almost back to the mild symptoms I had before the hydo. Guess that is not the treatment for me. Just shows how individual we all are. I live with IC 24/7 and can say that most of time, it doesn't interfere with what I want to do, except for food. I am uncomfortable but not dealing with constant pain. I am hopeful that I will continue to improve on the meds and that you too will find a treatment that works for you. Hang in there and keep the posts coming. The boards were my salvation for the three weeks after my hydro. There are so many helpful and loving people here to help you get through this.

Linda

[Mimi-in-Chicagoland]

I think maybe a lot of people have a slight case of IC for a while before it gets bad enough that they go to the doctor. Some of us are more stubborn than others and wait till we're on death's door (figuratively speaking) to get checked out. :rolleyes: Then there are different severities of IC. I think I had IC for at least a year before I knew it. I used to have a "camel's" bladder, so the fact that I had frequency didn't make me suspicious. Normal people go more than twice a day...so I wasn't worried. When I started going 8 times a day and felt like I had constant infections, THEN I got worried. It got worse when I would go every 15 minutes, but its much better now.

Those Wendy's Homestyle Chicken Strips are AWFUL!!! My husband wanted Wendy's the other night, so I ordered some. Most of the time, chicken strips are fine for me. I got the WORST headache from them. I wondered if they had MSG. I won't be eating them again. :yikes: I guess I'll stick with the potato and chili.