Discussions By Condition: I cannot get a diagnosis.

end of my rope

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: wvinhale
  • April 13, 2008
  • 11:43 PM

I am a 30 year old male and until three months ago in the best shape of my life. I woke up one morning with a large mass on the side of my neck, figured I was fighting off the flu and shrugged it off. The next week it got a little bigger and then i noticed one above it behind my ear. Still figured they would go away. My wife convinced me to have the doctor call in some antibiodics so i took them and still no changed. When she noticed that they were hard and fixed she convinced me to go the er. Doctor said i probally had staff gave me a shot and another round of antibiodics and sent me home. A month later and they were still there. Seen another dr. in another er and they thought it would be a good idea to biopsy, it came back unkown. Several weeks and drs later my condition is only getting worse and they cant find out why. I have severe night sweats and almost constant low grade fever, constant nausea and vomiting, severe weight loss average of 2pds a week total of over 50 now. Painful shocks and numbness in various parts of my body. I am so tired and weak now that i can no longer work, but i cant draw disability on an unkown disease of defect. I spend at least a couple days a week in the hospital on fluids because i get so dehydrated and weak i start blacking out. They have tested for every known infection out there even ones from other countrys and the one thing that all the drs agree about is that i have NO infection. I have had several x-rays and scans and they all say they are quite large but give me no answers as to why. Every doctor has given me different types of anti-nausea meds and they dont work. Now they are attributing most of my problems to stress. and that makes me even more stressed because i feel like i'm dying and they dont seem all that concerned. I am supposed to go wed of this week to have one of the many enlared nodes in my neck removed so they can do futher testing because now they say they didnt get enough of a sample to test thouroghly with the needle biopsy. I am under the care of a ent doctor now but he seems at a loss as to what i may have. At least its comforting to know they are people out there with the same problems, so i dont feel like maybe i am going crazy. I have been on meds now for three months for depression, anxiety, and insomnia but quess what they make me feel worse and the symptoms are still there. I am going to insist that they test me for castlmans, and sarcodoises because the symptoms fit with mine perfectly. If there is anyone out there that has these diseases or symptoms like mine please email me. I feel like sometimes i am going to be dead before i get an ansewer from the drs, so i am taking matters in my own hands.

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5 Replies:

  • There is some indication that sarcoidosis can be caused by a pathogenic organism. It is possible that there is an infectious agent causing it and that the lab cannot identify. There are some alternative ideas that come to mind.
    LINENUP 122 Replies Flag this Response
  • Do you have a cat? Have you been scratched? Cat scratch disease, perhaps...
    aquila 1,263 Replies Flag this Response
  • Wow - your docs sound like idiots:mad:! Stress is the cause of your symptoms - what garbage. That makes me mad - I am sorry you are going through all this! ENT docs are worthless IMO. I agree that a good Lyme test from Bowen or Igenex labs would be in order to rule this out. The night sweats and weight loss are very troubling. Have you had your c reactive protein done and was it high? Have you visited an oncologist? I don't want to worry you unneccessarily, but your symptoms do point to possible cancer. Please push for an oncologist if you haven't yet done so! Have you tried any compresses locally to the regions to help? I would recommend finding a good Oriental medical practitioner who specializes in Chinese herbal medicine as there are some excellent herbs for lumps, abscesses and nodules. I would get off of the meds if they are not helping - talk to your doc about this as you cannot just go "off" antidepressants, but would need to taper off them. Were you taking any meds before this illness occurred? When allopathic medicine doesn' t offer any answers, an alternative approach may really help. Acupuncture can at the very least help get the night sweats, nausea and anorexia symptoms under control. Please try this I think it would really help. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I agree with seeing an oncologist due to the mass. I would want to rule out Hodgkin's disease or lymphoma, etc. I don't think an ENT is the doctor to see with your symptoms.
    Beth56 272 Replies Flag this Response
  • I am so sorry for what you are going through. I would be interested in knowing what your SED levels and CBC are. I agree that you should not continue medications that are not working, but be sure you have given them ample time, and do not stop without consulting your physician. A little trick I was taught for nausea was to take small sniffs of an alcohol swab. I know it sounds strange, but for some reason it works. What anti-nausea meds are you on? Alternative types of intervention are a good idea for treatment and relaxation. Be sure to eat a healthy diet to help you through this elimination process for strength and healing. My son was diagnosed with Lymes disease last year. You really have to push to get the correct tests done. It is an expensive test, but worth doing if it is possible. Right now, I think removing the masses for pathology review is a smart idea, both to provide comfort and to properly assess the situation. Best of luck to you.
    wisconsinwendy 6 Replies Flag this Response
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