Doctors are clueless (research: unusual gastro and heart symptoms)
I am hoping to get some help here. The Docs can't figure out what's going on with me.
Here's what's going on:
Since the middle of November 2004, I have experienced minor pain in my chest along with minor light-headiness on occasion. I attributed this to my smoking and cut down on the amount that I smoke. I have also not felt particularly well for the last 4 months, nothing that I can identify, except for a lack of energy, severe ringing in my ears, and a very minor flu-like feeling.
Beginning about 5 months ago, I started having more chest pains, mostly in the chest muscles (without difficulty with breathing, or any increase in phlegm), light-headiness on occasion and a general feeling of not feeling well.
About 4 moths ago, I started getting pain in my abdomen, ribs, kidneys, chest, and back. The pain would be in the range of a 5 or 6 on a scale of 10. I was unable to get comfortable regardless of whether I was sitting, laying down, or standing.
About 3 months ago, my symptoms seemed to be getting worse. I was experiencing pain in my right side, mostly below the right rib cage. My stomach was becoming very sore and feeling bloated & tight. I experienced pain that would move from my right side to my kidneys on my left side, to my upper & lower abdomen, throughout my chest, into my lower ribs, into my back and was having some difficulty breathing. The only constant was the pain in the right side & chest. I started feeling very light headed from time to time. The ringing in my ears seems to be worse when the symptoms increase.
On 1/25/05, the symptoms increased in severity in my right side, chest, abdomen, and back. I was having moderate difficulty breathing and felt very lightheaded.
It seemed that whatever position that I laid in, that the portion of my body that was in the up position, is where the pain concentrated, and that when laying on my stomach, that I felt gas or air bubbles rise over my kidneys, as well as the pain being concentrated in my back. At that time, I was prescribed aspirin & codeine that helped alleviate the pain. I was more comfortable over the weekend, but noticed that while I did not experience as much pain, certainly due to the medication, I felt very sore in the morning, as if I had been hit with a baseball bat in the stomach, ribs, chest & back. Also, on Saturday evening, I experienced uncontrollable shaking & shuddering for about 5 minutes. I thought that it may be shivering from the temperature in the house, but it was 78 degrees. Could this have been a sign of shock?
I continued to manage the pain over the weekend until Sunday evening when I experienced a strong spasm in my upper abdomen, just below & behind my sternum. I experienced the pain increase in the immediate area from a “5” to around a “9” (to me, kidneystones are also a 9). This pain quickly spread throughout my chest at a “9” level. I felt the pain radiate into the right side of my neck and into my left shoulder. My entire abdomen began to “actively” hurt, as well as my right side. This pain spread to my back, from my spine across my ribs and around my right side. I had great difficulty breathing and felt as if I losing consciousness was imminent. It was at this time that I called 911 and was transported to UC Davis emergency room. The pain did not lesson until they administered morphine, nitro-glycerin, & Pepcid. I eventually felt well enough to go home and managed the pain with aspirin & codeine. I was VERY sore the next morning throughout my chest, abdomen, ribs, & back. That morning, I had an appointment with Dr. at which time we discussed the findings from the tests from my ER visit. There was nothing to indicate a diagnosis.
The symptoms typically appear to worsen in the late afternoon & evening, with increased ringing in my ears being a precursor. I have also noticed that I begin to feel bad and become very irritable a couple of days before each “episode”.
Eating & food types do not appear to have a direct cause on level of symptoms, but after taking Pepcid, my stomach seems to have a little less pain.
The pain “moves” throughout my torso, with body position seeming to being a factor.
There has been a sensation of a cool liquid contacting my liver, kidneys, and lungs when symptoms are the strongest, almost as if there is a toxin being released that affects the organs and abdominal tissues. The pain also goes to my back, just below the shoulders, and wraps from the spine to the right side of my ribs. My stomach gets the same sour feeling as if I was kicked in the stomach. My stomach has been tender with a feeling of being bloated and gets very tight. The bottom area of my ribs gets very tender in the front.
My experiences with Hepatitis C:
I was diagnosed with Hep C of unknown origin in 1993 (?) and have been treated with Interferon twice. Both times I was unable to continue treatment due to side effects.
My sister also has Hep C of unknown origin. She was scheduled for a liver transplant in 1998 when I personally drove her from Sacramento to San Francisco three times due to a donor liver being available. On the third attempt, the donor liver was viable and my sister was prepared for transplant. The surgeon opened my sister’s abdomen and was preparing to remove her liver when he saw that her liver did not need to be removed. The transplant was cancelled. My sister and her family were grateful that she did not need the transplant, but my sister still lives with the scares of an unnecessary surgery.
My last liver biopsy was in 2002: The doctor was teaching a resident (?) how to do a biopsy and failed to get enough tissue for a proper specimen, so they took another biopsy in the same location. I was sore for months in the biopsy location. I attempted the Interferon & Ribavirian treatment shortly after. I felt the sensation of air bubbles being released at the biopsy site. This continued for the 2 week duration of the treatment. At the time, I swore that I would not allow another biopsy to be performed on my liver since it was very painful and traumatic with them going into the same location twice. Could the previous biopsy site be a potential cause for my symptoms if it did not heal properly?
The pain is now centered about the 3rd rib from the bottom, right chest at about a constant 3 level of pain.
What they've done:
Checked my heart (seems to be OK)
Ultra-sound of the major organs, especially my liver (all seem to be OK)
Barium & Iodine i.v. MRI (nothing of note)
Chest X-ray (Negative)
blood tests - I cannot recall all tests taken since I have been to the lab about 4 times, as well as all of the tests taken in the ER.
endeoscopy & colonscopy - only finding was some chronic irration of the stomach, noncancerous.
Rib Xray - I had a cool Xray tech who let me look at the X-ray, mainly because it was new I think. While he said that he couldn't say anything about my X-ray, but he did point to a small spot on my rib (looked like a small circle with the center being of "normal" color) and said "that could be something". He also mentioned off hand that the rib didn't curl like most peoples' do. This was on Monday of this week. The doc said that he would call if there was anything on the X-ray, I haven't heard back from him.
The doctors seem to be convinced that this is in my head or that Pepcid AC will cure it in 3 months. I have no follow up appointments, so guess they are giving up. I have had to complain to my insuarnce to get an appointment with an internist. I guess I'll have to complain some more to keep the docs interested, don't know what else to do. I had to give up my job because of the travel involved and the docs won't do disibility forms unless they have a diagnosis, I'm going broke FAST!
I need help, any ideas? has anyone gone through anything similiar?
Last edited by DX-; 05-20-2005 at 10:04 AM.
Reason: indicate research help needed
Nope, no invasive type of procedures, except for 3 years ago doing a liver biopsy. You would think that the xrays would show anything metal, like a neddle point. They did mess up, but kinda wierd that it would take 3 years to show up, but it is in the same exact area.
Bless your heart -- you have been through the ringer! I'm not a medical person at all -- but I do have some knowledge about combining facts and doing research, so here are a few suggestions of where you can go from here:
1. Get ahold of your medical records. Specifically, you've had lots of tests and biopsies and there will be test and pathology results associated with them. You'll probably need to get them from whichever doctor prescribed the tests, not from the labs themselves. By law, they must provide them to you, so don't be afraid to ask for them!
2. Begin comparing test and biopsy results as best you can. If they use terms you don't understand, look them up. There are lots of websites that can help you with terminology If any of the test results or biopsies have a piece of information that either doesn't make sense OR doesn't seem to sync with something else, you'll have even more to research. All you need to do is plug words and phrases into a search engine and see what you see.
3. It's unclear if you are seeing the same doctor repeatedly, or different doctors. I'm not sure what kind of doctor you should be seeing, but specialists only tend to focus on their knowledge of their own specialty -- they can't seem to see the forest for their own little tree. Consider going back to a GP after looking over your medical records, and with a master list of symptoms in hand.
That's what I can think of for now. Good luck with it.... there's a ton of information out there and even if you aren't sure how credible it is, it should help you formulate some more questions to ask your doctor.
I wish you the best, and I'll be happy to know when you find something you can get your arms around!
Last edited by Administrator; 07-13-2007 at 05:00 PM.
yes you may have something there,i saw this very same thing on the montel williams show not more than a month ago.check out his web site and ask questions (alot of questions)and by all means get a second unbiased opion.heart felt good health to you linda in arkansas
Thank you all for the advice.
I may have a breakthrough today (I've posted this same topic in the General Health heading under the same title since it seemed more appropriate there). The Dr found double Inguinal Hernias and a bone cyst on my rib, seems there are two things going on making harder to figure out.
I've posted more in detail on the general health board under the same title ( Doctors are clueless) if you have any thoughts about the new findings.
Just a thought here but in all of the tests that you have listed, I don't see an MRI of your spinal cord area.I really do think that this should be the next step here if what you just stated in your last post does not pan out as the culprit.All of the symptoms that you describe 'could" possibly be stemming from some sort of lesion or cystic type formation that is somewhere in your upper thorasic or lower cervical area of your spine.I have what is called a cavernous hemangioma (part of it was removed but still have some that was too dangerous to try and remove)that had been lurking inside of my spinal cord at the C 7,T 1 area and the symptoms I was having are very much like some of yours.i just think that since you have had all of the usual tests for abdominal problems,that you need to go 'out of the box" here and explore other more remote possibilities.problems in the spine can cause all kinds of really bizarre symptoms that you would not ever think were being caused by something inside the spinal cord.Just a thought.believe me, you just never know what is going on in a certain area of your body until you can actually see inside.i never knew I had this 'glob" lurking inside my spinal cord until it just happened to show up when I had an MRI done to try and determine just where a herniated disc was in my cervical area.Good luck to you and i hope you find the cause of your problems soon.Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.