Discussions By Condition: I cannot get a diagnosis.

Desperate and Dying

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • May 11, 2011
  • 07:55 AM

I am hoping I can reach out to someone here... please, anyone... I'm desperate. I don't know how much longer I can really take this. There has to be some kind of threshold, and there are times I've thought I've reached it... and yet, here I am. Anyway, I apologize in advance for this post's length, but please read it and please, PLEASE try to help me.
In Sept of 2009, I was bedridden for two weeks with severe epigastric pain, which was complemented by moderate-to-high fever, constipation, loss of appetite, fatigue, nausea. I went to the ER and was seen quickly because they thought it could have been appendicitis. An X-Ray revealed nothing. He told me to take some Tums, that it was probably just gas. I knew pain like that could not be caused by gas. A few days later, when the pain hadn't subsided, I went back. This time, an X-Ray found multiple ulcers in my duodenum and stomach lining. I was prescribed medication for the ulcers. In October, when the pain was STILL constant and debilitating, I went back to the ER. This time, I had a CTScan. The results showed a mass between my pancreas and stomach. It was revealed that the mass was elusive, and could only be seen depending on my specific position. That night, I was admitted to the hospital and didn't leave until two1/2 weeks later. The information is as follows:

-The mass was 8cm to begin with, and is epigastric, restricting the blood supply to my liver and pancreas, putting pressure on the liver/pancreas/gallbladder, but these organs show no signs of irritation.
-The mass caused intense, chronic epigastric pain.
-I was given large amounts of IV antibiotics. When they yielded no results, I was given large amounts of IV Vancomycin, again, with no effect.
-I was given a radioisotope scan with normal results.
-Pelvic exam was normal, except for multiple ovarian cysts that may/may not be related
-Another scan revealed two large lesions on my liver, that "appeared to have bled at one point."
-I had several "bubbles" of free-floating fluid in my abdominal cavity that seemed to "leak" from the mass, but no tests were done as the doctors could never "catch" the bubbles to extract the fluid to test.
-During a surgical procedure, my doctor took a biopsy of the mass's tissue and drained several milliliters of fluid from the more superficial part of the mass. He also discovered that the mass seemed to "grow" from the lymph node at that location, but the lymph node showed no signs of irritation and all of my other main lymph nodes seemed unaffected.
-The biopsy of the tissue and fluid returned "benign," but the doctor said he was skeptical of the results because during the procedure he had been unable to extract fluid or tissues from the core of the mass, and so the biopsy was conducted on the "part that doesn't really count."
*NOTE - My "unofficial" diagnosis was non-Hodgkin's lymphoma, though most tests indicated no evidence of infection or cancer.
-It's location causes the hyperactivity of my pancreas and stomach, causing ulcers.
-Reading through my progressive bloodwork charts, I had an elevated number of and WBCs, an extremely low level of RBCs, but was never treated for such
-Due to the proximity of the mass to my vagus nerve, my doctor was reluctant to remove it, but in February of 2010, after we had tried every other course of treatment with NO CHANGE, he decided to plan a surgery, saying that if he did not remove the mass, it could be potentially life threatening.
-I was self-pay, and my doctor ended up dropping me as a patient before the procedure could take place

Now, I still suffer the same symptoms, though the pain has drastically increased from its original debilitating state. I have gone to the ER many times in "extreme pain" just so I can get a CTScan, and learn, for myself, the progress of this mass. Since its drainage, it has not changed in size, however, I can still feel the mass internally when I sit/lay/stretch a certain way, if I lie flat on my back, it can be felt externally by touch, if I lie on my stomach, the pain is moderate but unrelenting. The lesions on my liver are still there, and still appear to "bleed periodically," the cysts remain on my ovaries.

My current symptoms include:

physical: (symptom)(frequency/variables)(treatment)
-fatigue (chronic, usually during daytime hours)(untreated)
-sudden onset of severe gastrointestinal pain, lasting anywhere from 5min-3hrs (seemingly random/spontaneous, about 2-3 times a week, usually during early morning or late night hours)(untreated)
-constipation (chronic)(untreated)
-fever, USUALLY accompanies each physical symptom, ranging between 99.8-103.5F (frequent)(if over 100F, it is treated with aspirin/ibuprofen/tylenol - if unmeasured or below 100F, it is not treated)
-sudden hot flashes/cold sweats accompanied by nausea, sometimes with vomiting, a cold "clammy" feel, a pale complexion, dizziness, and a moderate pulsating pain in my upper abdomen ALWAYS appear and disappear together in this group, and never deviate, lasts anywhere from several minutes to several hours (chronic/daily, no specific time)
-lower back pain, felt dorsally, ranging from inconvenient to extreme (chronic)

*note on the cold sweats: they seem to be provoked by a forced raise in my body temperature, that is, if activity causes me to start to sweat. A fever does not seem to cause the cold sweats, and the cold sweats don't seem to affect the fever, though the two happen simultaneously (one does not occur before the other).

-steady weight loss
-lack of libido

I use the OTC sleep aid "Unisom" periodically to treat the insomnia, and have been using it for about a year, at a frequency of about 2-3 times a week, sometimes more, sometimes less. Recently, I haven't used it at all. I have been given a low milligram prescription for Prozac and Straterra. I started Prozac one month ago, and Straterra last week. Before these, I was on Zoloft for four months with no affect. Before Zoloft, I briefly tried a few other antidepressants. I am on the birth control shot, called the Depo shot, and have been for three years. I am not currently taking, nor have I taken, any other medications within the past two years. I am a cigarette smoker, for about three years, at about 1/2 pack/day. I do not drink alcohol, except on rare occasion, as I have little tolerance and it makes me very ill. I do not do and have never done any illicit drugs.

Before Sep of 2009, I was a busy bee. I was a full-time university student, working on completing my sophomore year, attending 23hrs/week, studying pathophysiology. I was employed full-time as the manager of a local bookstore/cafe, working 35-40hrs/week, AND I was employed part-time as a retail clerk, working 15-20hrs/week. I had lots of friends, and healthy relationships with all of them. My social life was good.

But, now? A year1/2 later?
I have withdrawn from school and left the last semester of my sophomore year incomplete, forfeiting my scholarships and grants. I am unemployed, and have been since last August. My friends are scarce, my family feels far. These are all faults of mine, but I can't help thinking that if I felt better, things would be different.

I am and have been at a healthy weight for my height (5'4''/145lbs), although my weight seems to fluxuate by decreasing, then gaining ten pounds frequently. My diet does not seem to ease/worsen the pain, as I have changed my diet many times in effort to do so (e.g. low-calorie, low-dairy, low-grain, low-fat, low-sodium, etc.). Physical activity does not seem to affect the pain.

Well, sorry that was so long, but there are a lot of details to put into such a small space. No one has been able to help me. What's more, no one seems to care. The last time I went to the ER (in actual extreme pain), the attending physician ordered an X-Ray which yielded nothing. He said I had IBS and prescribed me some "Activia." I told him that the appearance of the mass depends on my position, that it's hidden between my stomach and pancreas. He acted as if he did not hear me, said he didn't want to hear "any more talk of tumors."

I am hoping I can reach out to someone here... please, anyone... I'm desperate. I don't know how much longer I can really take this. There has to be some kind of threshold...

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