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@mediagirl: Oh no! I hope they figure out what's wrong soon!!

When I was 4-6 years old I had chronic constipation and my pediatrician kept telling my parents that it was "potty fear." My mom had a feeling something was really wrong. I had to take a ton of medicine and nothing really helped. Finally, a specialist sent me to UNC hospital and through a series of tests, I had a disorder so rare that it didn't have a na,me. I've been told that its similar to crohn's. Basically, my colon was stretched to the size of an adult's and I had to have 3 surgeries (including a colostomy and reversal) in a 13 month period. The colostomy was a last resort and it only had a 50/50 chance of fixing the problem. They think it started with a birth defect that affected my intestines and colon. I'm fine now as long as I take my medicine everyday and watch what I eat.

Yikes! Hope you guys get answers soon!

My entire life I've been having sharp pains under my ribcage on the side of my chest where my heart is. It would take my breath away, but within 5 minutes it would be gone and I'd only get these pains about once a year, so I never really did anything about it. Then about 8 years ago I got the pain so badly I couldn't walk or talk, and it didn't go away. I went to the ER and got admitted and they did every test in the book, including cat scans, EKGs, and very painful ultrasounds looking for a blood clot. I also got really painful blood thinner injections in my belly. None of the doctors could find anything wrong with me, and morphine wasn't taking any of the pain away.

The next morning the attending was doing rounds with the med students and he examined me and immediately said "oh, it's Devil's Grippe." Apparently it's a virus that lives dormantly in your body and flares up every now and then, causing the cartilage around your heart to be irritated. They call it Devil's Grippe because it feels like an evil spirit is clutching your heart. It's also known as Bornholm's Disease and is the coxsackie virus, which is the same strain as hand foot and mouth, I think. He said there's no treatment and sent me home with ibuprofen.

Has he seen a specialist?

@mediagirl: ER is the worst place to get a diagnosis for somethng rare--they deal with accute problems and recommend a type of specialist. I recommend following with your primary doc/family doc and seeing if he/she can do something/recommend someone who is at least inthe right field.

Good luck!!

I was very anemic for about 8 years and doctors kept wanting to test me, I took a ton of iron supplements, nothing worked at all, I finally just said - I think I am just anemic and a accepted it.

Fast forward a few years and a few other things start happening, stomach aches pains, mental fogginess, few other things and I basically self-diagnosed myself with celiac.

Went to see a gastro doc at MGH, told him I was like 90% sure I had it - told him everything and he was like, nah - you're fine, I think it's ibs. Practically forced him to give me an endoscopy to confirm and sure enough I was right - he said it was evident as soon as he got in, biopsy confirmed.... I so believe in trusting your instincts.

Good luck - hope you figure out what's wrong soon!

@mrs. wagon: wow that's really interesting!
Ive had some stomach pains that would affect me in high school and college that were so painful I was hospitalized, but I never got a diagnosis and it eventually went away.

@pastemoo: you should definitely look it up, it's also called pleurodynia. Now that I know what it is it makes me feel better when it hits... it's definitely stress related and the pain literally takes my breath away sometimes. But at least I know it's relatively harmless and it'll go away with rest. Now I just go "ow, devil's grippe, devil's grippe".

@mediagirl: If after seeing some specialist, they still can't figure out what's wrong, try seeing if you have a chiropratic neurologist in your area. They are not a regular chiropractor - they specialize in just the upper spine, neck, jaw and head issues. They generally specialize in migraine treatment, but the ones my husband and I saw helped with severe tension headaches and TMJ - so they do also deal with other head area pain. Might be worth a shot if the other doctor's can't determine his issue. Good luck!

Back in college, I had a awful pain in my back and chest - I thought it was a heart attack and went to the ER. The doctor diagnosed me with a "skeletal tremor".

It happened again right after going to a friend's graduation party out of town. The party started late and I was stuck in traffic and didn't eat for hours. Same thing that happened last time, we went to an amusement park out of town, decided to come home that night and hadn't eaten in hours.

I went to the ER again and this time was diagnosed with heart burn! The doctor was in shock about my previous diagnosis and even confronted the other doctor.

I hope they figure out what's wrong and it turns out to be not so serious!

When I was in my first couple years of college, I was unable to keep most food down for days sometimes weeks on end. I would try and eat and it would come up almost immediately. We did several tests but nothing ever turned up. We later found out it was caused by stress and it still happens occasionally but no where near the way it was back then. It was frustrating that we could do so many test and all they could tell me "is my food took longer to digest then most people's."

@mediagirl: Thank goodness he can sleep now! Hopefully they find the root cause soon!!!

The ER is the wrong place to go for unexplained medical issues. They excel at stabilizing very sick patients. Better to wait for the referral to the doc who specializes in her issues.

Never mind sounds like you are on your way to the answer!

@pastemoo: heh heh! Good advice

@Mrs. Jacks: Precordial catch syndrome! My sister and I both have experienced this at times but didn't know what it was; I have always wondered if I'm gonna randomly die of a blood clot in my lung or something. I had a similar pain last night when laying down on my right side only but am thinking maybe it was a muscle or something because it didn't get worse when inhaling...anyway, I am so glad you mentioned it! Big mystery solved.