liver disease - the beginning

[Abbie14]

Hi I'm looking for some insight,  If you don't mind me asking what were your first physical symptoms that you knew something was wrong? Did you have strange symtoms, persistent pain, or pressure? The reason I'm asking over the years I've had extreme fatigue, headaches, vomiting attacks, WEIGHT GAin swelling in my feet, high BP, low tolerance to physical activity, I'm only good to actually get up and go for about 4 hours and then I am exhausted to the point I can't move, I'm sick to my stomach, feeling as if I'm going to die, I have a constant dull deep ache in my back at the lower rib that raps around to my front lower rib, I feel like something is pushing on my insides and creating pressure almost as if something is crushing me, every move and breathe I take I feel it, I have seen every tons of specialist nothing ever really shows up except abnormal LFT's at first my ALP was the only enzyme that was raised now over the last 6 months my ALT has started rising along with a slight raise in my AST and my BUN and the rest of the test are starting to drop and I've had heavy rectal bleeding with clots at times  , I'm only 28 and have been dealing with this pain and feeling like crap for 6 years and the pain and symptoms seen to be progressing, I don't drink, use drugs, I don't really eat much I have no appetite but I still continue to gain wait, over the past month my palms and my sides of my stomach have been itching to the point I'm going insane, I have no rashes though? I'm trying to get a GI appt. To let him investigate but I have to go through my PCP to give me a referral to this particular physician because I have dealt with this so long I did the research and found the top rated GI specialist in our state, I have been tested for Hep c , had a hida scan, A GGT test, Several other tests and nothing shows up. Sorry for the long spill, but I'm scared, confused, and no one can really explain the symptoms and my flare ups when it all gets really bad and I can barely move because I feel so bad and the pain is so intense on my right side, I've even been tested for MS, and some other diseases to that degree, any information you can give would be appreciated

[fntn]

Seems that you're dealing with a cholestatic issue of some sort. Much of what you describe is familiar and I'm dealing with those sort of issues myself. Have your doctors done any biopsies with your colon or liver for additional data? Seems strange that they haven't been able to piece together a diagnosis yet. I've dealt with my disease for some time and it has manifested itself in quite a number of crazy ways, so chronic cholestasis can create a big puzzle for sure.

[Livelife777]

Sorry for all that your going thru.  It's so difficult when you feel bad and can't find answers.  Not a doc but have you looked into Auto Immune issues?  Perhaps a Rhumatologist may offer some insight.
Hope you find help soon
.....Kim

[Abbie14]

Thank you all for your replies this has just been such a miserable ride over the years bouncing from one specialist to the next, at this point I just want an answer a true diagnosis of what's causing all of this, whether it may be something so simple that's been overlooked or something major. Again thank you for the replies.

[Dee1956]

Hi there. I am sorry you are going through this.
My first symptom that something was wrong was fatigue.  Then I started to get these red dots on the bottom of my legs which indicated my body was fighting HCV.  It wasn't until my platelets were tested and found to be at 67 that I was sent to a blood specialist a hemotologist.
He tested me for lymphoma, leukemia, lupus and hepatitis.
It turned out I had hepatitis C.
I was also told the cherry red dots on my upper body were a sign of liver disease.
Just the fact that you are bleeding is very bad.  I am surprised your primary has not sent you to a gastro.  
Again, really sorry, I went through years of not knowing what was happening to me.
I hope you can get to a gastro asap
Dee

[hepcandme]

We're not doctors here but it doesn't sound like you have HCV or cirrhosis to me - that would be apparent from your blood tests. There's nothing about Hep C that causes the type of pain that you describe

I have a young friend who has Crohn's disease that sounds similar to what you are experiencing. Just a thought

Remember, I am not a doctor - just a person with Hep C

Your doctor is the one to make the diagnosis. Happy to hear that you have sought out a specialist and yes, going trough one's PCP does seem like a huge waste of time but that's the way it works with most insurance

I hope you feel better soon