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Old 04-05-2012, 09:11 PM   #1
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Badoop doop. Mystery Diagnosis on the boards! Chronic.

Keep in mind that I'm 14. This has been going on for roughly 4 months now. We have no idea what it could be.

Doctors don't know what's wrong with me, but hopefully we'll get some answers within the next week or two. I just got home from my outpatient appointment in a HUGE hospital. Met with the head of the whole hospital-- doctor wise!

My symptoms:

Migraines - I was just diagnosed with chronic migraines today!
Kidney pain - Has been going on since early EARLY January.
Rashes - Started about 2 weeks after the kidney pains.
Spleen pain - We're not sure if it's my left kidney or my spleen, so spleen is a possibility!
Joint pains - Knees, hips, shoulders, right ring finger.
Depression - YEARS.
Anxiety - Just as long as I've had my depression.
Extreme fatigue - Started about a week before the pains did-- still going on!
Nausea - Only if my kidney/s hurt and I eat!
Fevers - Always have a constant mild one, but they can get really high! Lymph nodes are often swollen with high fevers and a migraine.
Paleness - I've always been pale. I'm as white as can be! But since I got sick, I've gotten paler!
Really REALLY milky/cloudy urine - Only happens when my kidney/s hurt!
Irregular periods - I'll skip 2-4 months and then they're so light they last 2 days! No, it's not because I only just got my period-- I've had them for three years now.

And now onto my last blood results-- from March 9, 2012:
MCHC - Low
Platelets - High
Neutrophils - High
Lymphocytes - High
Monocytes - High
WBC - SKY HIGH
RBC - Close to being high

I've gotten the run around from so many doctors! I went to the Emergency Room a couple days after the pain started. I was diagnosed with a cyst on my ovary. They did an ultrasound-- there was no cyst.

Then I was diagnosed with Acid Reflux and a stomach ulcer because of the nausea I felt after eating while my sides hurt-- Wrong again!

I was then diagnosed with gall stones. Keep reading and you'll read about it!

I was tested for kidney functions and liver functions-- both came back okay. Kidneys could've been better, but they were okay.

I was scheduled for an ultrasound on my pelvic area and gallbladder. No gall stones and NO cysts on my ovaries! All clear.

I was then referred to a gastro in the cities because of my nausea. This was the least of my problems, but it was better than the teeny small town hospitals and clinics around here! We went and immediately the doctor said "Oh, we'll do an endoscopy and a colonoscopy, and if we don't find anything, I'm diagnosing IBS [Irritable Bowel Syndrome]." This, as you can imagine, did NOT go well with my mum!

They tried Tramadol and Tylenol 3 for pain-- no effect-- at all!

I went to the doctor again for pain about a week ago and I was prescribed 5 mg of Vicodin and to cut it in half-- 5 mg is too much for my tiny size! I'm 136 [62 kilos] and 4'11". 5 mg makes me too loopy-- I can't function.

I was referred to a MUCH, MUCH, MUCH bigger hospital-- same city though. The appointment was today! Nothing like going around a hospital in a wheelchair because your arms are too sore from using crutches because you have a SEVERELY sprain ankle! They took blood and did ultrasounds and did urine tests. My kidneys looked..... Weird. I've seen kidney ultrasounds before, and mine looked different. Hmmmmm..... Waiting on all the results! They're testing my blood counts and kidney/liver functions and antibodies for Lupus.

I don't function because I want to. I function because I simply have to. The only reason I have the will to get up and moving every morning is for the one guy in my life who I promised I would never leave, no matter what. And it's because of him that I've even made it through these 4 months. Without his pushing and support and encouragement, I would've given up awhile ago.
He gets it. I support him and his kidney cancer<3333

In all honesty, my mum and I have been thinking that it was Lupus this whole time.

But now?
Now we wait.

Any ideas?

Last edited by BubbleGuppy; 04-05-2012 at 09:15 PM. Reason: Forgot a symptom.

 
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Old 04-05-2012, 09:20 PM   #2
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

I am very sorry you are going through all of this. It does sound like you are talking to the right people and you might get answers soon, though.

By the way, were you tested for Lyme and other chronic infections? Have you seen a good rheumatologist at any point?

 
Old 04-05-2012, 09:28 PM   #3
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Doctor said that he didn't think that it was Lyme-- I was bit at about 14 months old, been having headaches/migraines since I could complain about them-- but I think they're testing for it. And they checked my joints for stiffness and stuff for MS, I think. I don't know how far that can go with a blood test-- if it can.

About the rheumatologist, nope! We have to be referred to go to a different hospital-- it's because of our insurance. Our insurance WILL pay for it if we have to go to a different hospital out of state, but only if it's an emergency!

 
Old 04-05-2012, 09:40 PM   #4
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Conclusive tests for MS are a bit more involved than a blood test, yes. And keep pursuing the rheumatologist, that's probably the most valuable specialist right now.

Make sure that, when you go, you have all the paperwork in order, including the blood tests. Possibly your pediatrician's office can make some calls to expedite things.

 
Old 04-05-2012, 09:46 PM   #5
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Yep! We always bring the paperwork and my medications! And yes, we will pursue the rheumatologist. It's a good idea! But I also might need to see an ortho because of my ankle. :C

 
Old 04-08-2012, 07:53 PM   #6
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Got the results from my ultrasounds and blood test from Thursday/April 5th.

Everything on my ultrasounds look normal, and all of my blood work came back normal.
The blood work coming back normally is weird, because my last blood work... It came back all out of whack. :c

BUT.

We are still waiting on the Lupus antibody blood work. We should get that sometime by Friday, but definitely not before tomorrow.

I'm really scared, to be honest with you. If something comes back positive in that blood work, I have no idea what I'll do. I'm afraid it's going to come back positive. :\

If it does, that's good... In a way. It means we're on the right track for an answer. In another way, it's bad. I mean, I'm 14... I don't want Lupus! :c

If it doesn't, that's good... Which means I don't have Lupus.
In another way, it's bad. It means a lot more testing and still no answer! :c
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Old 04-10-2012, 11:38 AM   #7
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Good luck to you and let us know how the autoimmune testing went. I am guessing that you will get back a result for an ANA test, called a titre, with mention of a pattern. It also includes testing for other antibodies. These tests can help narrow down if you have an AI disease and which kind because there are many more than just lupus. They are not 100%
indicative of anything in and of themselves, even if they are positive. It's kind of confusing, but they can help point the way, as it were, when combined with symptoms. I know it's all pretty scary, but even if you do have lupus or whatever, there is treatment available and can be as simple as keeping out of the sun. I hope that you don't have ANY disease but if you do, best to get treated early, so you can get on with being a young lady and having fun, instead of worrying and being scared. Sometimes what we don't know or what we imagine something's going to be like is waaay worse than the actual way things are. Even adults feel this way sometimes. Talk to your mum about your feelings and I hope your ankle heals soon!

 
Old 04-10-2012, 11:47 AM   #8
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Good luck to you and let us know how the autoimmune testing went. I am guessing that you will get back a result for an ANA test, called a titre, with mention of a pattern. It also includes testing for other antibodies. These tests can help narrow down if you have an AI disease and which kind because there are many more than just lupus. They are not 100%
indicative of anything in and of themselves, even if they are positive. It's kind of confusing, but they can help point the way, as it were, when combined with symptoms. I know it's all pretty scary, but even if you do have lupus or whatever, there is treatment available and can be as simple as keeping out of the sun. I hope that you don't have ANY disease but if you do, best to get treated early, so you can get on with being a young lady and having fun, instead of worrying and being scared. Sometimes what we don't know or what we imagine something's going to be like is waaay worse than the actual way things are. Even adults feel this way sometimes. Talk to your mum about your feelings and I hope your ankle heals soon!

 
Old 04-10-2012, 04:04 PM   #9
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

My mum is blaming her anxiety and depression on me being sick and complaining about the pain... So that doesn't seem like a very good idea to me. She blew up on me this morning for no reason, wanting me to apologize for making her "sick" again.

I'm not going to apologize for being sick, thanks so much.

She's also convinced that it's my mental health causing me to be sick. If I didn't have depression, schizophrenia, self injury tendencies, and past suicide attempts, it would've never crossed her mind. I think it's BS, really... It's been months since I last hurt myself and over a year since my last suicide attempt. I'm fine now, but apparently she doesn't think so.

Still no results on the testing, unless they called my mum today while I was at school. I guess I'll find out when she gets home.
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Old 04-10-2012, 06:45 PM   #10
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Oh, man, I have been there. Understand, there are few things in this world as difficult as facing the serious illness of your child.

I was 18 when I first developed symptoms of fibromyalgia, and I was diagnosed at 20. I'm now 31. My father, to this day, has never actually named it out loud, and it took my mother years to be as OK with it as she is now. Just the other week, she saw me rubbing my back (which was killing me, thanks!) and got all upset.

It hurt her in ways I still can't begin to imagine. Sometimes she was supportive, often she was helpful, but occasionally, she actually took out her frustrations on me, or blamed me for causing or making up the problem. I felt very alone at times, I have to say.

Just, give her space, and understand that your illness may upset her as much as it upsets you. Maybe sometimes you'll have to be the adult. Or maybe she just needs to find something concrete that she can do to help you.

Last edited by janewhite1; 04-10-2012 at 06:46 PM. Reason: Added stuff.

 
Old 04-10-2012, 07:00 PM   #11
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

To be totally honest with you, the whole reason I haven't just given up and let it take me over is because of my boyfriend. He knows what it's like to be going through this. His mum was scared as hell for the 3 months that he was sick before he was diagnosed with kidney cancer. He's kept me going, I guess you could say. He's really the only reason that I haven't just said "screw it" and let go. I can tell you now, that everyone that knows me is thankful for him, even if they don't agree with the age difference... He JUST turned 19 and I'm 14. It's not that big of a deal, because we're in different states even.

I don't even really know how I'm going to react if this test comes back positive. All I can tell you now is it will NOT be pretty.
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Old 04-23-2012, 08:51 AM   #12
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Hi. I was reading your post and wondered if you had any further update on your tests. I can feel how frustrating and worrying this all is for you BUT you have youth on your side and that counts for a lot. I admire your inner strength with everything you have gone through. All the best

 
Old 04-24-2012, 07:44 PM   #13
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

Apparently everything came back normal. We still don't have my ANA test... So I don't know. ;n;

I'll let you know when I do.
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Old 04-25-2012, 05:58 AM   #14
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Re: Badoop doop. Mystery Diagnosis on the boards! Chronic.

I had abnormal blood results for 4 months and then voila ! everything came back normal. i suspect a lot of these types of conditions are prone to flare and from what I have read can take a long time to really show a clear diagnosis. I wish you well.

 
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