symptoms but no diagnosis

I won't bore you all with the hell I have been through trying to get doctors to believe I am sick. Suffice to say that my stomach was swelling and I was told to lose weight. I have red spots on the tops of my feets the doctors just shrugged. When I said I was tired the doctors said eat more healthy. I showed my edema and the doctor said it's minimal.  I suspected it was Hepatits C because my ex-husband has it.

When I broke down in tears a doctor ordered an ultrasound on my stomach and it showed that my liver and spleen are 'significantly' enlarged. My guess is when the medical community uses the word sigificantly it means 'huge.' The red spots are now moving up my ankles to my shins. The edema is still there in my feet but now my feet burn so bad at night I can hardly sleep.  The fatigue is so bad I can't usually stay awake more than 4 hours at a time. My muscles are constantly cramping and either my muscles or my joints (hard to tell which) are very sore and it's hard to move around very much. Grocery shopping leaves me shattered.

I have tested positive and negative several times for the Hepatitis C antibody and tested negative twice for the actual Hepatitis C virus RNA. I've taken my concerns to a hepatitis C forum where I was told I probably have a fatty liver and I should lose weight and est better. But then another person I know irl who is a biochemist said a fatty liver does not cause and enlarged spleen.

The pain in my back where my spleen is, is very bad lately and my stomach is very distended, but I have no jaundice. I have an appointment with another liver specialist in February and I hardly know what I'm going to say to him.  Are the RNA test often negative?  Should I insist on another one?  Should I insist on a liver biopsy?  Is it possible it's not Hepatitis C?


Thanks for reading all this.

Lilly Liver

[hketsun]

Well Splenomegaly is not usually caused by Hepatitis C also.

[hketsun]

Theoretically, splenomegaly (enlargement of the spleen) is possible due to portal hypertension (high blood pressure in the portal vein) caused by liver cirrhosis (fibrosis of the liver due to chronic insults, such as Hepatitis viruses or alcohol abuse).

As the liver is chronically inflammed due to hepatitis viruses, it becomes fibrotic and compresses the portal veins in the liver thus impinges on the blood flow that are supposed to be returned through the veins to the heart. If the outlet (to the heart) is blocked, then the blood flows back, therefore it engorges in the spleen as the spleen is quite capable of storing blood, hence it becomes enlarged.

In your situation however this might be less likely. Splenomegaly associated with cirrhosis is a very late sign of liver disease and is usually seen in patients who have advanced liver cirrhosis.

You had an ultrasound performed and abnormalities such as cirrhosis should be readily picked up by ultrasound if it is that advanced (as the liver would most likely be macronodular in patients with Chronic Hepatitis). Moreover, cirrhotic liver is usually smaller than usual due to chronic damage so it should not be enlarged. Disease progression also takes about 10 years.

Concerning your test results, it is possible for you to have antibodies against Hep C virus with a negative virus RNA. It's a good thing!! These test are quite sensitive and specific, meaning that if it's negative you probably don't have the disease. So I suggest you to worry less about Hep C infection as you have taken the test twice. I don't think you should go for a liver biopsy.

But please consult your doctor!!

[LillyLiver]

Well the second test for the rna was not possible because no antibodies were found, or so said the report which I received a copy of.  I tested positive for Hep C antibodies 15 years ago, it was suggested I be tested because my husband at the time had it.  Symptoms started about 10 years ago.  Since then I have had, as I've said, both positive and negative results for Hep C antibody.  I don't drink, specifically in the last 20 years I've drank a handful of times.  

I'll be very happy if it is not Hepatitis C, but I'm still left wondering what it is and what I should ask of my new gastroenterologist whom I see next month.

[LillyLiver]

Thanks anyways everyone, I guess I'm still in no diagnosis limbo, even here.