Still undiagnosed & very frustrated

[Cat-a-Tonic]

I'm just so frustrated. I'm trying not to cry because I'm at work (one hour left of my shift and then I can cry in the car the whole way home). I keep having test after test after test and they keep telling me that the results are normal. I've had a colonoscopy w/ biopsy, CT scan w/ contrast, many many many blood tests & stool tests. I'm spending thousands of dollars to pay for these tests and I'm no closer to a diagnosis. (I have health insurance, but I have a high deductible so I end up paying for a lot myself before the insurance kicks in.) The only thing that lets me know I'm not crazy is that prednisone works for me, and pred wouldn't work if there weren't anything for it to work on.

I've got an upper endoscopy scheduled for mid-August but I'm thinking of cancelling it because I can't afford it and I can already guess what the results will be - hmmm, normal! I should start a psychic friends hotline. Seriously though, I'm just so upset right now. I just had another test yesterday (this one for Addison's disease, my GI has kind of given up on finding IBD so he's looking for other diseases with similar symptoms that also respond to pred) and just got the call that everything looks normal, again. I'm the normal-est sick girl ever! And I'm so sick of being sick without any answers. It's been nearly a year and they have found zero inflammation, no ulcers, no fistulas, no fissures, no narrowing, no thickening, no nothing. My blood is normal, my intestines are normal, everything's normal. So why do I still feel like garbage every day??? I could just scream! I just want a diagnosis!! Is that really so much to ask for?

I just had to get that all out. Thanks for reading my rant. I feel better for having gotten that out there. You guys are the best and I'm so glad that I can say these things here that I can't necessarily say to my friends or family because they don't understand the way that you guys do.

 

[Crohn's 35]

Hey CAT.... wow, you need a ((( HUGE HUG)))). But believe it or not I was liket that in 1992-3. I was so sick from also having to drink this, prep, scopes, sbft, ct scan after scan. I whole year of that agonizing pain! You may not want to hear this but you need to go see another Gi! I went to a teaching doctor and he figured it out in 5 min. I lost 40 lbs in 2 months, and living on painkillers. My one and first time test was a endoscopy and they shot barium thru to the end, and I saw on the screen (yes I was awake but dont want to scare you on that part) and it was so looped, I dont even know how food passed?

I had repeated bowel obstructions and it explains why in the test. Fresh eyes could help you. Going to the same doc isnt going to help your case I think. It is the only way to see what it could be. Hope you get some answers soon, this has gone on way too long.

Hang in there kiddo, we are behind you 100%! We are here for you, and I fully get how you feel. Take care.

 

[Cat-a-Tonic]

Thanks Pen. It further complicates things that I called my mom to try to vent to her, but she is 100% convinced that I've got celiac disease because there's a lot of that in her family (even though both the blood test & biopsies tested negatives, plus the fact that pasta & bread are some of my safe foods and do not ever seem to cause or worsen my symptoms). She found some obscure website that says that celiac is only reliably diagnosed with endoscopy biopsies and not colonoscopy biopsies, so she's essentially forcing me to have the endoscopy. I'm just glad my doctors all accept monthly payments or I wouldn't be able to afford all these tests at all!

I will see how the endoscopy goes, since I already have the appointment, and then if I'm still "normal" I will definitely look into other GIs in my area. I have a friend who got diagnosed with Crohn's a few months ago, so I will ask her who she goes to and if she likes her GI. Thanks for your support, Pen, I really appreciate knowing that there are others out there who have gone through the same things and have come out of it without having gone bankrupt or crazy.

 

[whysoserious]

I'm so sorry Cat. I don't have a diagnosis right now either and I know how incredibly frustrating it can be. Not only do you want to know what's wrong so that you can get treatment, it feels like you can't move forward until you know what you are up against. It frankly sucks to be so sick and confused on top of it.

 

[Dexky]

Hey Cat, it sounds crazy but I'm sorry your test was "normal". We've talked quite a bit about your frustrating situation. I just hope you get some kind of answers soon. Sorry for all you are going through.

 

[bushydougie]

Hi Cat,
As you probably know already I could quite easily have written your rant myself. I often feel so similar to how you are feeling. My only difference is that luckily in the UK I do not have to pay for medical bills.
I think that what we both have to remember is that we know our bodies and we KNOW that something is not right at all. We have to stay strong and keep pushing for answers even when we don't want to. And we both know that pred works for us so there is something not right otherwise the pred would't do anything.
Having read many posts on this site I have seen how many people all over the world struggle to get a diagnosis. As Pen has testified! I am positive that we will both soon get the answers that we need and the relief will be huge.
Hang in there. Keep fighting for the answers you need and good luck for Monday.

 

[DustyKat]

Hey Cat,

I can't begin to imagine the level of frustration you are feeling, I only know how frustrated I was seeing Roo suffer without a diagnosis for so long.

:hang: sending heaps of hugs your way............

:hug::hug::hug::hug::hug::hug:

Take care,
Dusty

 

[gypsigirl28]

Hi Cat, Sorry to hear what you are going through. I can relate to your situation totally. I have been going through the same thing since November.
I understand your frustration cat and I feel for you.

 

[xxNoGodxx]

I'm just so frustrated. I'm trying not to cry because I'm at work (one hour left of my shift and then I can cry in the car the whole way home). I keep having test after test after test and they keep telling me that the results are normal. I've had a colonoscopy w/ biopsy, CT scan w/ contrast, many many many blood tests & stool tests. I'm spending thousands of dollars to pay for these tests and I'm no closer to a diagnosis. (I have health insurance, but I have a high deductible so I end up paying for a lot myself before the insurance kicks in.) The only thing that lets me know I'm not crazy is that prednisone works for me, and pred wouldn't work if there weren't anything for it to work on.

I've got an upper endoscopy scheduled for mid-August but I'm thinking of cancelling it because I can't afford it and I can already guess what the results will be - hmmm, normal! I should start a psychic friends hotline. Seriously though, I'm just so upset right now. I just had another test yesterday (this one for Addison's disease, my GI has kind of given up on finding IBD so he's looking for other diseases with similar symptoms that also respond to pred) and just got the call that everything looks normal, again. I'm the normal-est sick girl ever! And I'm so sick of being sick without any answers. It's been nearly a year and they have found zero inflammation, no ulcers, no fistulas, no fissures, no narrowing, no thickening, no nothing. My blood is normal, my intestines are normal, everything's normal. So why do I still feel like garbage every day??? I could just scream! I just want a diagnosis!! Is that really so much to ask for?

I just had to get that all out. Thanks for reading my rant. I feel better for having gotten that out there. You guys are the best and I'm so glad that I can say these things here that I can't necessarily say to my friends or family because they don't understand the way that you guys do.

I just got done with my colonoscopy, did my CT scan on Friday, as soon as they wheeled me in for the colonoscopy my GI looked at me and went "Well good news the CT scan came out great and there's nothing wrong with you, no sign of Crohn's"

So, the constant side pain I get after eating that keeps me up all night long (that goes away after about 2 months or so, then comes back the next year, or waits a year and then comes back) the severe diarrhea that comes and goes when it pleases, and the fever/night sweats I guess are all in my head. I'd love to go to a different doctor, but I'm on what's called the BRIDGE Program, and it's only offered through one medical group here. I'm not sure how I would get a second opinion, I'm so sick of being sick, I'm a 30 year old male and this past month I've done nothing but, cry , cry and cry some more. I wish after I would be more happier today after learning that I "don't have crohn's" but I'm still losing weight, and I'm still in terrible pain.

 

[Cat-a-Tonic]

Thanks everyone for your replies. Although I hate to know that others are going through this miserable experience too, it is nice to hear from others in the same situation and know that I'm not crazy for thinking these thoughts or for having many tests with no answers. Sam, Whysoserious and Nogod, I really hope that we all have some sort of answers soon. (And not the "oh it's just IBS" or "oh you're just depressed/crazy" type of answers either! I've already heard that from one doctor, don't need to hear that again!)

Sam, you are lucky in the regard that you don't have to pay for your medical bills. I work full-time and sometimes that's still not enough to pay for all my bills, and I keep looking for other ways to make money. My friend is opening a boutique soon and she said I can sell scarves in her shop (I crochet), and my brother is moving into my spare bedroom this week so he'll be contributing some money towards rent & food. So I'll get by somehow, but it's really tough having to pay for all of this. It's so hard to be sick and have to figure out how to afford being sick!

NoGod, I'm also 30, and your colonoscopy & CT scan experience is the same as mine. Both came back totally normal, no sign of disease whatsoever. No inflammation, no bleeding, no narrowing, no ulcers, no anything! So I feel your frustration. Are they going to try any other tests on you? I'm having an endoscopy next month and that should rule out celiac at least, even if it doesn't find anything. Good luck to you, I hope things get better and you get some answers.

 

[D Bergy]

What are your symptoms specifically. Possibly you have a different problem entirely?

Dan

 

[Cat-a-Tonic]

What are your symptoms specifically. Possibly you have a different problem entirely?

Dan

Well, here goes:
Frequent diarrhea (sometimes watery, sometimes with mucus, no blood so far)
Nausea (not much vomiting though)
Abdominal pain (mostly in the lower-right) & cramping
Fatigue, weakness, insomnia
Low blood pressure, dizziness, dehydration
Unintentional weight loss (close to 20 lbs - and I was a skinny chick to begin with)
I also have some symptoms that aren't as frequent, not sure if these are directly related or not, but I get headaches & migraines (never got migraines until I got sick with this gut thing), joint pain & lower back pain, night sweats, pallor (all the color will drain from my face and I'll look dead) and insomnia.

So based on those symptoms, my GI was looking for IBD. After quite a few tests, he hasn't found any indication of IBD. The only things that have come back on any of my tests are that I have low sodium, I have a (probably benign) lesion on my liver, and I respond well to pred. Based on the pred finding and my symptoms, my GI is now looking for Addison's disease (it has similar symptoms and also responds to pred). I just had a test for that and the results are somewhat confusing, so I'm trying to get more answers on that. My GI is still going to look for IBD - I'm having an endoscopy next month.

 

[D Bergy]

Any skin rashes?

Dan

 

[Cat-a-Tonic]

Any skin rashes?

Dan

It's hard to say for sure. I just noticed something on my bottom last week, right near my anus. I put calmoseptine on it every day and it's mostly gone now. It was red and maybe an inch long - looked like a rash or a sore, and it hurt. But I don't know for sure what it was, and I haven't had anything else like that.

 

[xxNoGodxx]

Thanks everyone for your replies. Although I hate to know that others are going through this miserable experience too, it is nice to hear from others in the same situation and know that I'm not crazy for thinking these thoughts or for having many tests with no answers. Sam, Whysoserious and Nogod, I really hope that we all have some sort of answers soon. (And not the "oh it's just IBS" or "oh you're just depressed/crazy" type of answers either! I've already heard that from one doctor, don't need to hear that again!)

Sam, you are lucky in the regard that you don't have to pay for your medical bills. I work full-time and sometimes that's still not enough to pay for all my bills, and I keep looking for other ways to make money. My friend is opening a boutique soon and she said I can sell scarves in her shop (I crochet), and my brother is moving into my spare bedroom this week so he'll be contributing some money towards rent & food. So I'll get by somehow, but it's really tough having to pay for all of this. It's so hard to be sick and have to figure out how to afford being sick!

NoGod, I'm also 30, and your colonoscopy & CT scan experience is the same as mine. Both came back totally normal, no sign of disease whatsoever. No inflammation, no bleeding, no narrowing, no ulcers, no anything! So I feel your frustration. Are they going to try any other tests on you? I'm having an endoscopy next month and that should rule out celiac at least, even if it doesn't find anything. Good luck to you, I hope things get better and you get some answers.

Same goes for you, we're too young to be this miserable. I've lost so much due to this stupid whatever it is. I'm scheduled today for an appointment with my GP, my GI wants me to get a referral to a Urologist,because a ton of crohn's symptoms also fall in line with Prostate problems. I've got a follow up with the GI in October, and if the urologist doesn't find anything, then the GI wants me in sooner. At least I know that I've got a doc who's concerned and not just throwing me out to die, still scared out of my mind though. Best of luck to the rest of you, I would try and stay on the same safe diets (if you're on one at the moment) just in case you have a dumb GI guy who doesn't know, like Jettalady and many other people have said, "sometimes it takes a second pair of eyes". Good luck! and thanks to everyone here, you've been extremely helpful and kind, don't see that much on the internet/real life anymore.

 

[Astra]

Hiya Cat

dunno whether you read my thread today about my visit to the osteopath?
I've had headache, migraines, joint and muscle pain etc, dizzy, foggy, just feeling **** all the time, tired, fatigued etc etc
he said I've got Arnolds Neuralgia, check my thread for details
cos of this, I've been so anxious, and visited the dentist today too (another thread!)
I've got Bruxism! I am grinding my teeth in my sleep, causing fatigue and insomnia! Apparantly it's a well known sleep disorder and very common with digestive illnesses.
just some other specialists for you to follow up on, just to eliminate
hope you find answers soon, you gotta kick arse I'm afraid! scream if you have to! I did, I lay down on the floor and refused to move til they listened to me.
I also recommend seeing a gynae too, there are so many corellations with GI issues
good luck, keep fighting hun
xxxx

 

[Cat-a-Tonic]

NoGod: I'm a female so fortunately I don't have to worry about prostate problems, sorry to hear that you're dealing with that possibility. That is very good that you have a doc who is concerned and isn't ignoring you. And I'm definitely on a "safe" diet, I avoid anything spicy or fried, I avoid garlic and (most) chocolate as I know those trigger my symptoms, and I avoid caffeine and alcohol and red meat and so on. It gets kind of boring eating bland foods and Ensures, but at least I know that my diet isn't going to make things worse. Good luck with your GP visit and good luck with the urologist too, let us know how it goes.

Joan, I grind my teeth too - always have. I had one of those nighttime mouth guard things for awhile but didn't like it - it moving around in my mouth seemed to keep me awake more than the grinding did! I think my grinding is hereditary, as my dad does it and I think my uncle does too. Neither of them have worn down their teeth so I figure I don't have to worry too much about that, at least not right now. I know it's something I've always done, since I was a little girl, so I think for me it must be just a hereditary thing instead of a response to stress or illness.

I've never heard of Arnold's Neuralgia, I'll have a look into that, thanks for the info. I assumed the migraines were tied to my gut problems since they both started at the same time, but who knows. And I usually get a yearly checkup from the gyn, plus they didn't see any endos or anything like that on my CT scan, so that shouldn't be part of the problem.

 

[Mayflower537]

Any skin rashes?

Dan

What kind of skin rashes are you talking about? Are those significant?

 

[D Bergy]

Rashes are not real reliable indicators of anything by themselves, but when combined with other symptoms they can be.

There are certain specific type rashes that can indicate one disease or another, and I have run into a few of them.

For instance I have Psoriasis on one shin that I am treating currently. The cause of Psoriasis is unknown, but it often accompanies Crohn's and some other autoimmune diseases. It means nothing on its own, but can help diagnose Crohn's as one of several other symptoms.

A butterfly rash on the face is one symptom of Lupus. They can be useful indicators of a disease, but not usually on there own.

Dan

 

[Astra]

Hiya Cat

I was thinking more along the lines of muscle tension in your jaw and head and neck causing the migraines and headaches, more than losing your teeth!
xxxx

 

[Cat-a-Tonic]

Joan, thanks for clearing that up. Since I've always been a teeth-grinder, and the migraines just started last year, I doubt the two are connected. But I'll mention it to my dentist and see what he thinks. Since we're on the subject of dentists, do you suppose it could be a wisdom teeth thing? I've never had my wisdom teeth out and they've never sprouted up either but I know they're in there, so they might be pushing against my other teeth and causing pain or problems. I'll have to ask the dentist about that too.