Discussions By Condition: I cannot get a diagnosis.

Desperate, with Little Hope

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • May 12, 2011
  • 00:42 AM

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?

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9 Replies:

  • I don't think anyone has seen this post, since it just showed up yet is dated from over a week ago. Ugh! :confused: Someone out there HAS to have some idea of what's going on with me.... isn't there anyone?
    Anonymous 42789 Replies Flag this Response
  • Sorry. Most people here are screaming help! help! But when somebody tries to help, screaming people don't need their help at all and disappear. Help here just means wasting the own time. There are simple ways to get rid of the most diseases but people prefer keep suffering... It's their choice anyway. If you really need a help, you should understand that your information is not enough for complete diagnostics. Post exact info about your date of birth, your weight and height, your normal blood pressure numbers.
    alltimatehelp 128 Replies Flag this Response
  • Sorry. Most people here are screaming help! help! But when somebody tries to help, screaming people don't need their help at all and disappear. Help here just means wasting the own time. There are simple ways to get rid of the most diseases but people prefer keep suffering... It's their choice anyway....Why so hostile?Anyway, I'm quite aware that the information provided by a forum is limited, and that I cannot ask for a diagnosis via a message board, just as I am aware that no one who has read/will read my post is MY doctor and has no idea who I am, and the probability that there are certified doctors who read my post is actually quite slim. I'm asking for advice from my peers. I've noticed that in many threads, there are replies that say, "Oh! Yeah, I had that too, and here's what I did to help..."That's what I'm asking for. Counseling, if you want to call it that.
    Anonymous 42789 Replies Flag this Response
  • I'm really sorry about your suffering. But you also should understand that every person has own conditions and causes of diseases, although the symptoms and manifestations are similar to other persons. That is why the information about similar cases is mostly useless and even may be dangerous. If you follow the treatment and prescriptions assigned for other person you may face very bad consequences and side-effects during your treatment. Most of modern doctors don't understand this and can't determine the proper reasons (except the simple cases). The existance of this forum is evidence of my words. The propability of good outcome after using medications and procedures prescribed for others is low. It's like a lottery. I hope you understand what I mean. Anyway I wish you good luck.
    alltimatehelp 128 Replies Flag this Response
  • OK. If I say that I can help you (after analysis of your case), what next? You will do all my directions and instructions to get better? I doubt very much. You even refuse to answer standard questions that every doctor asks.
    alltimatehelp 128 Replies Flag this Response
  • Wow, you aren't getting much sympathy here! :(I don't know what to make of your symptoms, but clearly you need medical attention. Where do you live? You need to look into what medical facilities are close by and how you would be able to get access to them. If you live in the US and are unemployed, would you be able to get Medicaid? Also, if you live in a small city or someplace remote, there may not be the correct type of specialist in your area, so finding a doctor who can put all of the puzzle pieces together could be pretty hard. Can you get copies of your test results and scans? Depending on where you live, that information actually belongs to you and you need to get your hands on it. I don't know if this helped you, but don't be afraid to ask for help (even if some people give you a hard time). Again, since I don't know where you live, I can't make too many suggestions of where to get help, but you may want to try social service agencies to find someone who can guide you to your next step.Good luck!
    pingpong1953 5 Replies Flag this Response
  • Sorry. Most people here are screaming help! help! But when somebody tries to help, screaming people don't need their help at all and disappear. Help here just means wasting the own time. There are simple ways to get rid of the most diseases but people prefer keep suffering... It's their choice anyway. If you really need a help, you should understand that your information is not enough for complete diagnostics. Post exact info about your date of birth, your weight and height, your normal blood pressure numbers.I'm new to this forum but I thought this forum was for people that had symptoms and wanted to find out if anyone else had similar issues and could provide insight. I came here because I was researching my symptoms/test results trying to figure out if there there is more to what's going on with me besides just the individual issues. I just want to make sure I find out as much as I can in addition to what the doctor is telling me since I have such limited time with the doctor normally. The original poster did say her age and that she was "normal" weight so I was surprised to see this post that seemed like an attack. In my post I included all the information that I have (my weight, test results, etc). If I left something out I would appreciate someone replying to ask.... without attacking me.I'm not sure why you are posting here if you think it is a waste of time. Anyway RCS01 I hope you find out what is going. Sorry I can't provide any insight but to say you are doing the right thing by researching and posting to forums. Amanda
    AmandaAtl 8 Replies Flag this Response
  • I personally thought your post was quite detailed. The mass is lying on the blood supply to my liver, stomach and pancreas The issue is that may be giving you pain at times... You really do need to get it out. Doctors "cant" currently help you if you dont do as they recommend. The only answer is to get that mass out. This may mean that you need to borrow money from family or friends or take out a loan to pay for that to be done. and yes it is worth it when you dont know if it could grow and put your life at risk. Going against doctors recommendations and leaving something which may become life threatening, something which is also really bothering you, is an action you may later end up really regreting. 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. A common condition called GERD (http://en.wikipedia.org/wiki/Gastroesophageal_reflux_disease) can do that. (GERD commonly causes heartburn too). The mass due to pressing against things is probably also giving you also GERD ....... The lack of replies at this forum of late I think is due to all the spamming posts which have put a lot of people off. ***warning .. never give your date of birth out to strangers. There should never be any medical need to do so. Age yes can help but date of birth no***
    taniaaust1 2267 Replies Flag this Response
  • First of all, thank you guys for replying with something other than negativity. I really REALLY appreciate it. Wow, you aren't getting much sympathy here! :( If you live in the US and are unemployed, would you be able to get Medicaid? I cannot get Medicaid, I have tried and been denied numerous times. I live in a fairly large city - Joplin, MO - at the time, we had two major hospitals and many clinics. My doctor was the only doctor of his kind here in town, the other gastroenterologists said that the procedure was too risky to be done by someone who wasn't an oncologist. I'm new to this forum but I thought this forum was for people that had symptoms and wanted to find out if anyone else had similar issues and could provide insight. I came here because I was researching my symptoms/test results trying to figure out if there there is more to what's going on with me besides just the individual issues.Exactly! That's exactly what I'm trying to do! I'm not out here looking for miracles. I thought the whole purpose of this forum was to have people to relate to? To talk with people who may be suffering from something similar, and who may be able to say, "Yeah, I went through that. I found out that this.... ....really helped me, maybe you should try?"The issue is that may be giving you pain at times... You really do need to get it out. Doctors "cant" currently help you if you dont do as they recommend. The only answer is to get that mass out. This may mean that you need to borrow money from family or friends or take out a loan to pay for that to be done. and yes it is worth it when you dont know if it could grow and put your life at risk. Going against doctors recommendations and leaving something which may become life threatening, something which is also really bothering you, is an action you may later end up really regreting.I would LOVE to have this stupid thing removed, but, unfortunately, I can't. Not only can I not afford it, but it's apparently a really risky surgery that not just any doctor will perform. I have already looked into the teaching hospitals in my area, though I can't afford to travel. A common condition called GERD (http://en.wikipedia.org/wiki/Gastroesophageal_reflux_disease) can do that. (GERD commonly causes heartburn too). The mass due to pressing against things is probably also giving you also GERDThank you! Thank you so much! See? THAT'S what this forum is all about. I didn't know what GERD was, but now I do - that's one symptom I can tackle. That's one symptom I can relieve myself from. Thank you so much!
    Anonymous 42789 Replies Flag this Response
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