Discussions By Condition: I cannot get a diagnosis.

Looking for a Diagnosis for so long ...

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: david75248
  • September 29, 2008
  • 01:49 AM

I have been suspicious of Leukemia as I have almost every symtom. The CBC however has never shown the white cells to be unusually high. It comes and goes over periods of weeks to months. It almost always involves dull to sharp pain where my Liver is. I am a Hepatitis C survivor and now have stage 4 Cirrohsis of the Liver. I was declared "cured" of the HCV though almost 8 years ago. There is an accompanying fever that is usually low during the day at 98.0 and often high in the evening at 100.8 or so. The pain will often radiate through my spleen and shoulder. At it's worst there will be chills and sweats. Both my Liver and Spleen are enlarged. :confused:

It is a real drag, as I have spent a lot of money on CT scans and PET scans. I have been told that "angionomas" in my liver cause false positives on the CT's. This has continued now for almost 10 years now. Receiving a diagnosis would greatly help in finding solutions to a number of daily living problems. I have recently kind of given up on my Doctors, as they keep running the same expensive tests that fail to offer help.

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  • Oh, yeah a couple of other factors. I am ANA positive spattered Titter, but negative for Lupus. Maybe the ANA was from the Hepatits C? I also have problems involved with the HLA-B27 Spondylarthrpothys. Mainly Sacroiliitis. Numerous spinal problems invoving degenerative disc disease and Lumbar Faucet disorder, cervical stenosis. I really don't think that my back problems are in any way causing the other symptoms. Probably should also mention Aortic insufficiency and possible Mitral stenosis? I have managed to take off a lot of weight, so the blood pressure is receiving normal readings. I guess it's all kind of a mess huh? Still no explanation for the pain in the Liver, and it sometimes really hurts! http://forums.wrongdiagnosis.com/images/icons/icon6.gif
    david75248 2 Replies
    • September 29, 2008
    • 02:08 AM
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  • Hi David. I'm sorry you haven't gotten a answer for your condition. I'm not a doctor, so I'm sorry that I can't help you with your symptoms, but there are many people on this site who know about many conditions, and they should be able to help you. And yes, it is a mess, I hope you can get some answers soon, and I hope you feel better; I too, know the pain of not getting any answers, and having tests not show anything. Good luck.
    Anonymous 42789 Replies
    • October 5, 2008
    • 08:22 PM
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  • Well, there are two major types of leukemia, myelogenous and lymphocytic, the first associated with formation of red blood cells and the second a proliferation of basically white blood cells. Each of these diseases has various staging that further defines where the cell proliferation is occuring. I don't see anything in your range of complaints or symptoms that would suggest either form of leukemia. As for your liver, I believe you may be referring to cavernous hemangioma, which is a rather rare benign tumor associated with the liver. Also be aware that the body temperatures mentioned would not constitute anything remarkable and at best, the upper range mentioned could technically be called a low-grade fever. I would ask at this point what your doctors are seeking to confirm with the CT and PET scans? Typically, these tests are run to support the contentions already formed on the basis of your symptoms and not to merely go looking around for an underlying cause. Have you had a viral load measured lately? This would be important to know whether and to what extent the virus is active. An enlarged spleen can certainly cause discomfort and I'm uncertain if your question is whether something unknown is causing the pain. Realize that your enlarged spleen is due to the cirrhosis and not something like leukemia. It's also important to know that joint and muscle pain can occur as a consequence of cirhhosis as well. This is more likely the explanation for your symptoms. If the spleen is tender to palpation and rebound tenderness can be elicited, then it's more likely that enlargement, together with the other symptoms associated with cirrhosis are responsible for your pain and discomfort. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • October 6, 2008
    • 01:34 AM
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  • Hi Jamie, of course it always helps if one can be a little clearer about what is going on. ( I will try) Again, Intermittent fevers generally low grade, that come and go with what seems to be cyclic Lymph node swelling. Anemia, a low Lymphocyte count, and a high ESR (sed rate) over 45. Replying to C. J Tottle M.D, Yes sir, unfortunately I have done several rounds of CT's and then PET scans. ie... based on the following CT findings as follows: "Mild interval enlargement in the gastrohepatic nodule, now measuring approximately 1.8 X 1.6 cm maximally. There are still small non specific lymph nodes in the upper mesentry and retropertioneum. Further elvaluation may be warrented, which could include PET-CT imaging, as suggested for further work up in the chest". When ever these node swell up, they can be quite painfull. I am now considering to refuse to participate in yet another round of CT/PET's as they are quite expensive and very much beyond my means, not to mention that they really haven't seemed to help much either.
    david75248 2 Replies
    • October 6, 2008
    • 02:18 AM
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  • ""Again, Intermittent fevers generally low grade, that come and go with what seems to be cyclic Lymph node swelling. Anemia, a low Lymphocyte count, and a high ESR (sed rate) over 45. """"Both my Liver and Spleen are enlarged.""Have you been tested for Lyme and co-infections? Other viruses and bacteria? Many with Lyme have the same symptoms. www.lymenet.org/ if you'd like to read and compare notes. Good luck~~JerseyLymie
    Anonymous 42789 Replies
    • October 6, 2008
    • 10:51 AM
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