Discussions By Condition: I cannot get a diagnosis.

Tumors, lesions, corrosion - no one knows!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • May 20, 2011
  • 10:31 PM

The story is a long one, so I'll make this short (as short as possible) and to the point. I'm a 22yr old female, of average weight and height. Until recently, I've been relatively healthy-no surgeries, no major or chronic illnesses. In Oct. 2009, I was bedridden with severe epigastric abdominal pain (a "10" on the scale) and fever (average of 102F). I was seen quickly in the ER for fear it could be appendicitis. An X-Ray showed nothing to warrant such debilitating pain, and so the physician prescribed me a medication to relieve gas. A few days later, the pain and fever persisted. I went back to the ER. This time, an X-Ray showed several ulcers in my duodenum and stomach. I was prescribed medication to treat the ulcers. Another few days later, when the pain and the fever had not relented, I returned a third time to the ER, explaining that this pain could not possibly be due to ulcers, it felt too "hard." An abdominal CT scan revealed a "mass" between my pancreas and stomach. I was admitted to the hospital, where I was kept for testing for two1/2 weeks.

The tests yielded:
-Mass is fluid-filled, and "leaks" free-floating bubbles into my abdominal cavity, of which were never tested due to the inability of the doctor to "catch" the bubbles.
-Superficial biopsy of the mass implied that it was benign, but the doctor said he was "skeptical" because, due to its location, he was not able to get a "good" sample.
-The mass was drained of 6mL during an exploratory surgery, of which was tested with no results.
-The mass is thought to be growing from that lymph node, but all other lymph nodes seem to be fine.
-The mass is lying on the blood supply to my liver, stomach and pancreas - the pressure it puts on my pancreas causes the over-stimulation of my stomach, which had caused the ulcers.
-The doctor told me the mass had the potential to be life-threatening should it shift position or change in size, and recommended I have it removed, however, I could not pay for the surgery and have no insurance.
-I have multiple ovarian cysts that may/may not be related to the mass
-I have multiple lesions on my liver and pancreas that "appear" to be related, and "appear" to bleed periodically.
-I have several smaller cysts on my other epigastric organs, which may/may not be related.
-A radioisotography (sp?) scan revealed nothing
-Multiple CBC's revealed elevated levesl of WBCs and lowered levels of RBCs, but I was never treated for this
-I was given large doses of IV antibiotics, but when they had no affect, I was given IV Vancomycin, also with no affect. Does not seem to be an infectious agent that is causing my problem.
-A pelvic exam was normal.

In Feb. of 2010, my doctor dropped me as his patient and I have not had any treatment since. Because of its location, the mass is only visible from a certain angle, and certain position, so it is missed many times. I return the ER every once in a while for an X-Ray, not expecting treatment, rather, I am trying to track the mass on my own. It has not changed shape, form or location.
My current symptoms include:
-Fatigue - chronic/daily
-Abdominal pain that stops as suddenly as it starts, can last anywhere from a few minutes to a few days and is usually a "7" or an "8" on the scale. Doesn't seem to be stimulated by anything specific. However, it seems that if I am tired (i.e. early morning, late night) the pain is more intense than if I am well-rested.
-Moderate-high fever (100F-104F) accompanies this pain, along with cold sweats and an overall clammy feeling, a dry mouth, lightheadedness and dizziness. They occur simultaneously, and one does not begin without the other (i.e. the fever does not start before the pain, the cold sweats do not start after the fever). Sometimes, I notice changes in my vision and headaches, but this is not constant.
-My insides feel "cold," and my saliva feels "cold," as if I have ingested great amounts of menthol. This happens regularly, daily, but is not accompanied by anything else.

My diet does not seem to affect any of these symptoms in any way, as I have tried numerous diets over the past year in an attempt to relieve some of the pain. I cannot find the variable that triggers the pain, and have tested many things. The mass can be felt internally when I move in certain ways (i.e. when I turn to shave the backs of my legs in the shower, I can feel it very well), and if I lay flat on my back it can be felt externally by touch as a small lump. Now, it is usually just a minor discomfort, as I have grown accustomed to doing things in certain ways that do not hurt. However, At worse times, the mass feels as if it is inflamed. During these periods, I cannot sit or lay in certain positions, I cannot flex my abdominal muscles, I cannot turn my torso, and I cannot eat. If my stomach is full or empty, the pain intensifies.

Before all of this, I was a full-time University student studying pathophysiology and veterinary medicine. I was employed full-time as a manager of a local cafe, and part-time as a retail clerk. I worked in the mornings, went to school in the afternoon, then returned to work in the evenings. I didn't mind - I could handle it. I was a busy-bee and my social life was wonderful.
Now? I have withdrawn from school and I am unemployed. Sometimes, I will go an entire week without leaving the house - or even getting dressed, because sometimes, the pain is that severe. Because I don't have enough money for the surgey, I can't find a doctor who will help. When the pain is at its peak, I worry for my life... I was told it could be fatal if the mass were to grow, and I sometimes wonder if it has grown.

I just want to be a normal 22yr old. I want to have friends, go to school and have a job. Most importantly, I don't want this pain. It's ruined my life. I feel like I'm stuck in purgatory. I've always thought of myself as a strong person, and on most days I can push through the pain, and I can ignore it, but on some days, I am almost forced to give up.

I don't know what to do, so I'm asking - no, I'm pleading - can someone please help me?
Read more at http://forums.wrongdiagnosis.com/showthread.php?t=100179&ktrack=kcplink

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