First let me say that this is not related to Test or hormones. I am seeking advice on how to deal with doctors about a problem I have.
In May of this year I was in the gym doing ab work. I felt a sharp pain in my right side just below the ribs. I thought I was just overdoing it so I stopped the crunches. Didn't think more about it.
That night I woke about 2am and my abdomen was on fire. It felt like nothing I've felt before. A tingling, numb, burning sensation all though my abdomen. It kind of freaked me out so I got out of bed. I was a little disoriented and also noticed that my hands and feet felt like they were asleep.. Those tingles you get when they start waking up. I took a hot shower and walked around a bit and it seemed to ease the burning but not the tingling in my hands. I also noticed that it was hard to do simple tasks that you usually don't think about.. sort of a groggy lack of focus.
This is all taking place on an offshore drilling rig about 60km off the southern tip of South Africa so going to the emergency room is a major undertaking.
The next day I went to the medic. She checked me out and said I was OK but if it happened again to come see her even if I had to wake her up.
Well that night I was laying in bed and I felt the burning start. I rolled onto my left side and I felt something go from my right side to my left side and leave a burning trail behind. It formed a pool in my left side and I immediately sat up in bed. I could feel it go down toward my groin after I sat up. This made me think it's some kind of fluid. I slept setting up that night, what little sleep I could get.
The next day I went to the medic again. She did some tests and said she couldn't find anything. We talked and I remembered that my gall bladder had been removed two years prior to that and it was in the same spot that this burning liquid is coming from. She said it might be my appendix also.
Next night.. I woke shaking uncontrollably. I took a hot shower and was still shaking so I went to the medic. She called the helicopter and they evac'd me to the emergency room in George. There they did blood and urine tests and said I did not have any infection and that I wasn't going to die. They did an ultrasound of my abdomen and said everything looks great. I asked the doctor what could be causing the burning and she said it could be acid reflux or Hiatal hernia. She gave me Nexium and released me from the hospital. I returned to work for my last few days and then returned to the US for my 4 weeks home.
When I got home I went to see a Gastroenterologist. He did an EGD (Endoscope check out of the stomach, esophagus and small intestine) and also a Colonoscopy. He said everything looked great, prescribed me some Dexilant (for acid reflux, which I've had since the mid 90's) and sent me home.
Anyway... before this becomes a book.
He referred me to a Digestive Specialist who also did an Endoscope check out of my stomach etc.. he also did an ultrasound of my bile duct. Nothing was found.
By this time I have read everything I can about my problem and also did some experiments. I found that it is triggered when I eat meat or fatty products.
If I eat a piece of meat, about 30 minutes later I start to feel a tenderness in the upper right abdomen followed by what feels to me to be a fluid leaking out. If I'm sitting it goes down toward my crotch. If I'm laying down it feels as if it pools in my back area. If I'm on one side it goes to that side. After I start to feel the burning about 5 minutes later I start to feel the numb, tingling feeling in my hands. It will sometimes get to the point of sharp pin pricks and burning in my joints. My feet start to swell and my skin feels like it's on fire. This can last for days.
I visited the digestive specialist again and told him that it's getting worse. He suggested a HIDA scan (radioactive dye injected that goes to the liver/bile duct. I went straight away to the clinic to have it done. I called them and asked if I should eat some meat to get the burning started. They said "If we want you to eat something, we'll tell you". Three weeks later I was able to get back in the see the digestive specialist to go over the HIDA scan results. I commented that I wasn't feeling the burning at the time because I had been eating only fruits and vegetables for the weeks prior to that. He mumbled something and said let's do a "Fatty Meal Stimulated Liver Ultra Sound" Ok the fatty meal part sounded good but why an ultrasound??? Why not do a "Fatty Meal Stimulated HIDA scan?".
So I've been to several more doctors in search of someone who will do the right tests in a timely manner. The surgeon who did the gall bladder removal said I should get an ERCP. None of the doctors I talked with will do an ERCP.
I suspect a bile leak from my cystic stump (the little tube that connects the bile duct to the gall bladder). Possibly I pulled the clips off the end or somehow ripped the tube during the exercise. Now it's September. Nothing has been done. The proper tests are not being preformed and I'm just getting worse. I've completely cut out all fat from my diet and I can go for about a week between the burning.
It used to take me out of action for a few days but I read that bile salts in the blood can cause electrolyte problems. Now when I feel the burning I drink a liter of pedialyte and within 30 minutes the tingling in my hands, foggy thinking and pin pricks are reduced greatly. I don't have two or three days where I don't know night from day.
The last visit to the Digestive specialist netted "Here take this and come back in two weeks if you're not feeling better" I went to get it filled and it turns out to be an anti depressant. What an insult.
How to go about finding a doctor who will take the time to go through the correct tests and get to the bottom of this?