I Have A Unique Medical Situation That's Baffling My Doctor

[Nobody]

You know you're up a creek without a paddle when your doctor tells you to take to the internet to search for answers while he talks to his associates.

This might get a little ling winded, but please read, because you might have the answer we're looking for.

8 years ago, I started getting this occasional pain on the left side of my abdomen, just under the middle of my front rib cage. This pain is moderate to severe when it attacks me, but only lasts in 3-5 second spurts, then comes and goes in about 3 minute increments. These attacks have lasted for 8 years, but they only come in periods of about a week at a time, then I go a few months with no issues, but it always comes back. My doctor attributed it to a possible small hernia, because my blood labs always came back normal, and there never appeared to be a trigger for these flare ups.

About 2 weeks ago, I started having the exact same type of pain, only far more severe, in the exact same spot on the right side. This did seem to have a trigger - spaghetti/pizza sauce, and peppers and spicy food. Every time I would eat any of these for dinner, the pain was so severe within 20 minutes of eating, that it kept me up until 2am or later and made me nauseous. Immediately I was certain I had gallstones. The reason I came to this conclusion, was because not only did I have all the telltale symptoms, but gallbladder disease tends to be hereditary, and I have had an Uncle, an Aunt, 2 cousins and a grandfather that have had their gallbladders removed for gallstones in the past 2 years.

Since gallstones pretty regularly cause pancreatitis, I was certain this would explain the pain in my left side all these years. My doctor thought the same thing, so he scheduled me for a full endocrine system ultrasound, and ran a very extensive blood test.

The other issue I was having, was that for about a decade, I have had a patch of skin the size of a baseball on the front lower shin of my right leg, that appears to look like a deep bruise. Problem is, I've never injured it, it never hurts/burns/itches, it just looks like a bruise that has never healed. He said the two main causes of this are diabetes and hyperthyroidism. So he included tests for both in my blood screen.

Today, the results came back for everything. He said the ultrasound showed that I have an inflamed and enlarged pancreas and gallbladder. The problem is, there were no stones, and no signs I had ever had stones. There were also no cysts or tumors, and nothing on the ultrasound indicated what the cause could be. He said an average gallbladder is the size of an olive, and mine is the size of a golf ball, so it is roughly 6 times the normal size. My pancreas is 3/4 the size of my liver, rather than the 1/4 that would be normal. SO he moved on to reading the results of the blood test. Every single thing, and he said it was the most extensive blood test that could be done, fell completely within the normal range for everything. I'm not diabetic, my pancreatic and liver enzymes are normal, and I do not have a thyroid disorder.

So there is literally no explanation for any of the things wrong with me. He told me point blank that he is completely baffled, and doesn't even know how to proceed with treatment. He then told me something not so comforting. He said to use google and message boards to find as much as I possibly could as to any possible explanation for the mark on my leg (it isn't raised, it doesn't bother me, it doesn't change in size or color, it literally looks like a bruise - purplish in color) and a possible explanation for the pain I'm having on both sides. While I'm doing that, he's going to talk to some associates of his and specialists, and see if they have any explanation.

That being said, if any of you has any ideas, it doesn't hurt to throw them out there.

 

[Miles Monroe]

If not for the enlarged gallbladder and pancreas, I would say Hiatal hernia. I was diagnosed with one a number of years ago, and the pain you describe is much like what I suffered with.

I'm amazed you doctor didn't send you for a scope of your esophagus. I have to go for a scope every two years because of my condition being a bit more advanced.

 

[Nobody]

If not for the enlarged gallbladder and pancreas, I would say Hiatal hernia. I was diagnosed with one a number of years ago, and the pain you describe is much like what I suffered with.

I'm amazed you doctor didn't send you for a scope of your esophagus. I have to go for a scope every two years because of my condition being a bit more advanced.

I just recently had one to check for Barrett's Esophagus. I wouldn't imagine much could change in a few months time.

 

[Miles Monroe]

I just recently had one to check for Barrett's Esophagus. I wouldn't imagine much could change in a few months time.

Barretts is a pre-cancerous condition. I have the condition that is pre-barretts. Barretts and esophageal cancer are very slow moving, that's why I don't have to go more often. If you got scoped, they would know if you had a hiatal hernia and told you. You would also be getting treated with antacids.

The pain I've had has put me in the hospital being treated as a heart attack more then once, so GI disorders can cause quite intense pain, and often on both sides of your chest. To the point of shortness of breath, and pain under the shoulder blades.

I wish you the best of luck with this. If I happen onto something, I pass it along.

 

[Nobody]

Barretts is a pre-cancerous condition. I have the condition that is pre-barretts. Barretts and esophageal cancer are very slow moving, that's why I don't have to go more often. If you got scoped, they would know if you had a hiatal hernia and told you. You would also be getting treated with antacids.

The pain I've had has put me in the hospital being treated as a heart attack more then once, so GI disorders can cause quite intense pain, and often on both sides of your chest. To the point of shortness of breath, and pain under the shoulder blades.

I wish you the best of luck with this. If I happen onto something, I pass it along.

I was diagnosed with GERD about a decade ago. It has gotten so severe that I am on Omeprazole and Protonix prescriptions, and still get very little relief. I was told at the time I had hiatal hernia, and I also have laryngopharyngeal reflux.

I found all of this out nearly 2 years after I quit drinking, and it definitely makes it a lot easier to never have to worry about going back to those days.

Another symptom I get almost every single day, which is very worrisome, but my doctor doesn't seem at all concerned with, is I get these sorta pinching feelings all over my chest that come and go all the time. I used to be worried about it being my heart, because I've been on Metoprolol for an arrhythmia for about a year, but my doctor said if it hurts when I touch it, and it does, that it isn't cardiac related. It still sucks though, and it would be nice to know the cause or how to make that stop.

I also have high triglycerides, and that constantly makes me worry about heart disease as well.

 

[Miles Monroe]

I was diagnosed with GERD about a decade ago. It has gotten so severe that I am on Omeprazole and Protonix prescriptions, and still get very little relief. I was told at the time I had hiatal hernia, and I also have laryngopharyngeal reflux.

I found all of this out nearly 2 years after I quit drinking, and it definitely makes it a lot easier to never have to worry about going back to those days.

Another symptom I get almost every single day, which is very worrisome, but my doctor doesn't seem at all concerned with, is I get these sorta pinching feelings all over my chest that come and go all the time. I used to be worried about it being my heart, because I've been on Metoprolol for an arrhythmia for about a year, but my doctor said if it hurts when I touch it, and it does, that it isn't cardiac related. It still sucks though, and it would be nice to know the cause or how to make that stop.



I also have high triglycerides, and that constantly makes me worry about heart disease as well.

I'm on the same meds, though we switched from the protonix to rantidine due to the ins dropping coverage on the protonix. If you we're diagnosed with GERD, I'd place a wager that the pain you're having is related, and your enlarged organs are another problem all together. Besides the meds, do you do all the other stuff like no food or drink 3 hours before bed, or lying down ? No bending over after eating? Bed elevated at the head, and sleeping on your left side ? No more then 8oz coffee a day, no carbonated drinks ? No huge meals... which was my real problem.

I'm like a a dog, and if you put in front of me, I'll finish it. That's how I ended up in the hospital two years ago. The waitress saw me walk in and said, "Pete, I have a steak as big as your head." By the next morning.. Easter Sunday, and my birthday, I was in the hospital. Go figure, my wife tried to finish me off by telling my we signed McNugget.

I'm on Tricor for the high triglycerides We have a lot of common problems. They scared the hell out of me with the pre-barretts, and I did modiffy my life style to some degree. The last scope, I had actually improved.

 

[Nobody]

I'm on the same meds, though we switched from the protonix to rantidine due to the ins dropping coverage on the protonix.

They tried me on the Ranitidine to start with several years ago. I never responded to it t all, and that was doing the 300mg three times a day. I had to go through hell and back to get the insurnce to cover the Protonix since it's like a gazillion dollars. They wouldn't even approve it with prior authorization from my doctor. I actually had to see a Gastroenterologist and get the EGD done and get prior authorization from him before they finally accepted the fact I need it.

If you we're diagnosed with GERD, I'd place a wager that the pain you're having is related, and your enlarged organs are another problem all together. Besides the meds, do you do all the other stuff like no food or drink 3 hours before bed, or lying down ? No bending over after eating? Bed elevated at the head, and sleeping on your left side ? No more then 8oz coffee a day, no carbonated drinks ? No huge meals... which was my real problem.

I do adhere to the no food 3 hours before bed or lying down, and the coffee restrictions. The things I have issues with are the elevated sleeping (it was making my feet swell, even with minimal elevation), I have to have soda once in a while (I have a slight addiction to Dr Pepper), and the no huge meals is a wash. Sometimes if I'm really hungry, which is at least once a week, I can't help myself. I usually eat pretty normal other than the time or two a week I need a lot more. And holidays, of course It's actually easy for me to control how much I eat, because I also have an undiagnosed issue that has caused me to be severely constipated for over 2 years now. It's anther thing no doctor has been able to solve, but it gets so bad that I've been on a prescription called Lactulose for 2 years that I have to take as needed, usually twice a week, or I can't go at all. I've often wondered if that's related to the GERD, or now with the info I have if it is related to the organ enlargement.

I'm on Tricor for the high triglycerides We have a lot of common problems. They scared the hell out of me with the pre-barretts, and I did modiffy my life style to some degree. The last scope, I had actually improved.

I take Lofibra, but it doesn't seem to help at all. I'm actually considering stopping that and trying out the high grade Omega-3. My triglycerides before the Lofibra were at 243, and now after all this time they have only dropped to 218 - still way too high. My total cholesterol is good, but it's very misleading because my HDL is anemic at 25, and my LDL is slightly up at 119. I just haven't found way to fix it. I eat so healthy, but that doesn't seem to put a dent in it at all.

 

[Miles Monroe]

LOL My triglycerides before the Tricor were over600. The doctor almost **** himself. All my numbers are good at this point.

I've found moderation lets me eat and drink what I want for the most part. I have one or two soda's a week, and still enjoy my wine. I'm a coffee junkie, but get away with it for now.

Antacids rob your body of Iron, and other vital goodies you would normally get from the food you eat. Maybe that's can be causing the enlarged organs.

Who knows ?

 

[Nobody]

LOL My triglycerides before the Tricor were over600. The doctor almost **** himself. All my numbers are good at this point.

I've found moderation lets me eat and drink what I want for the most part. I have one or two soda's a week, and still enjoy my wine. I'm a coffee junkie, but get away with it for now.

Antacids rob your body of Iron, and other vital goodies you would normally get from the food you eat. Maybe that's can be causing the enlarged organs.

Who knows ?

It's definitely worth looking into. I saw an episode of House years ago where a guy had very strange and unexplainable symptoms. Turns out, it was all caused by years of Omeprazole use. I just can't for the life of me remember what the condition was called, but it was a rare complication of long term use of the stuff. You could be on to something, I will definitely be talking to my doctor about it.

Edit: I couldn't believe when I went the direction you suggested and found the following - something that was never mentioned to me before, and something that isn't even mentioned in the prescription pamphlet....

Omeprazole long term studies reveal a rare (<1.3%) but possible increase in symptoms of other diseases or disorders. More serious long term side effects, as reported in labs and research studies include: depression, agitation, aggression, hallucinations, confusion or other changes in behavior or mood. In the most rare cases (<0.05%) Omeprazole can cause severe inflammation of the pancreas. Symptoms of pancreatitis can persist such as nausea, fever, chills, extreme pain in the upper abdomen or a rapid heartbeat, and possible palpitations. Other side effects that are sometimes considered to be serious may include appetite changes, dry mouth, weight gain, joint pain, drowsiness, hair loss, dry skin, vision changes, ringing in the ears, anemia, urinary tract infections, dry eyes or taste changes. Fewer than 1.3 percent of all patients will ever experience any of these side effects.

I put in bold the symptoms I have had. It makes me feel a bit of relief to know this could very likely be the cause of my symptoms. The only thing unnerving, is I can't find any information as to whether it is reversible.

 

[Miles Monroe]

Ya, I would speak with the doc about it. A drug side effect may not show up on a blood test, and that may be why they haven't figured it out.

I'll keep my fingers crossed for ya.