Words of Hope please?

[PennieLane]

I just wanted to ask a few questions, I'm new at this.  I'll bore you with my story in a bit, but first does anyone have any positive words for me? I am very scared and have no one to talk to.  How are you guys dealing with your diagnosis.  Does anyone else feel isolated and ashamed? How are you dealing with it?  Im am scared I will never be ok with the diagnosis, i dont tend to handle stuff well.  Are you guys happy and leading your life as if it never happened, im scarred ill never get through this depression im feeling now!

Now, with that said, i havent technicaly been diagnosed.  But i am very sure. Are symptoms always indicative of infection?  I have been having chronic muscle pains on and off since about 2 or 3 weeks after exposure, a sharp pain in my upper right abdomen, nausea, annorexia, and as of yesturday my stool looked lighter! One year ago almost exactly, i had a potential exposure.  5 1/2 - 6 months afterward, i went to the hospital in a panic and they ran a hep panel and liver function tests.  It all came back normal, but the D.O. said "no serological evidence of HCV infection, but a negative test may not completely rule out infection with or exposure to  HCV."  After the hospital visit, i forgot about  it and my symptoms seemed to disappear, but as of late they have reappeared worse than ever.  I have been so scared to face a positive result and almost decided i would rather not know, but the symptoms are getting much worse and i cant pretend nothing is wrong, today I went to the doctor that advised I get tested again and maybe have an Xray since it could be my gallbladder potentially.  She ran some blood tests, but not a hep panel.  I will need to go do that on my own, i dont know if i can handle it yet though.  I am very scared and can't face telling my parents and friends at the moment.  I just want to ask you guys if you think these symptoms are HCV??? and maybe if you could share some of your stories about how you found out and if you had symptoms during the acute infection?

Also, if you guys are at all religious, will you please keep me in your prayers this week, as I'll be getting tests ran.  Thank you guys so much for being here and listening to me, sometimes it just helps to get it out and talk about it!

[PennieLane]

Well, hopefully this is drawing to an end, im literally going crazy worrying about it.   I just want to know what is the likelihod that someone would test neg at 6 months and have normal enzyme levels but still have hep?

[PennieLane]

MerryBe, Im only 20 and im about 140 pounds 5'7, ive never really dieted.  

My mom, finally in a panic, made me go to the ER, not like they could really do anything if i do have it?.. but they ran liver tests AGAIN which were normal and took some Xrays, not sure how that helps but he said everything was fine.  He said he did not know what my symptoms are from : sore muscles, headache, nausea, upper right side pain, annorexia, but he said he highly doubts that it is hepatitis considering the test was negative  a few months ago and liver enzymes are normal, and since ive been vacinated for A and B and C is rarely transmitted through sex.... I feel better, but not convinced since many HepC+ patients have normal enzyme levels.  My mom told me to drop it and move on with my life, Im trying to... but something still feels off... just a gut instinct thing....  I think I am going to actually get tested for Hep again, to find out once and for all, wish me luck!

[merryBe]

first go and get an ultrasound for your gall bladder, even if neg, have a HIDASACAN done as well, as you can have gall bladder disease without stones and a normal ultrasound.  I'd rule that out first.
google gall bladder disease, symptoms are similar....

then, ask for a full panel for ALL types of Hep, not just hep C.
thirdly, yes it's scary, it's one day at a time, all we ever have anyway, but somehow this disease brings that home, but you'll get through.
Get to a good gastroenterologist for starters, and one in a practice that included hepatolgists in their staffs practice so you can be referred on as soon as possible if need be.

should you get tested again?  If you have a known exposure to someone who has it, then yes, I certainly would. Your liver enymes could be normal for years in the early stages. there is a difference in how this disease acts in the acute and in the chronic stages however. There are also other forms of Hep....most common those contracted from food repared by unwashed hands. However, stools can be lite and float from gall bladder disease, they are effected by diet also, what you eat....and light stool from liver disease is usually accompanied by other end stage symptoms none of which you exactly mention.
Here is a question, describe your anorexia, are you making yourself throw up BECAUSE you feel naused and that relieves it? This also could be gall bladder.
what is your age, weight, and have you dieted very much in your life or lost a lot of weight? It's hard to help much without more info.

[Deb_c430]

Great news about your liver levels. I tend to agree with your Mom, BUT if you need one more test to put your mind at rest then I would do so.   Peace of mind is a powerful thing as is imagination and worrying and blowing things out of purportion.

There are many who have normal liver levels, and then found out they have HCV.

High levels are a preindicater.

Good luck and again Congrats

Deb

[PennieLane]

So I got some of the blood work back today... All of my liver enzymes were normal.  Everything seems to be fine, the doctor said my white count was  a little high and I could just be a little sick.  My mother, whom i finally told, doesn't think i need to be tested for hepatitis again, since it was negative a few months ago and my liver enzymes and everything is normal right now.  Im still not convinced? should i get tested again or not?

[Mary4now]

I know exactly what you mean, really the best way to deal with this is to get the blood test.  As you've been advised your symptoms sound more like gall bladder, and in my case I had Irritable Bowel at the right upper quadrant.  I too was really scared, and things have calmed down after getting all the tests to determine what is really going on.  There is so much help with this, new treatments being developed, treatments right now that can clear the virus and lots of support.  Like I was advised here on this site, take a deep breathe, educate yourself and move forward.. This is not a death sentence, most people die with the virus not from it,, (thats my hep c mantra).  I think I've had it for 20 years and I have very minimal inflammation, so I am waiting to treat, hoping for a better treatment for the genotype I carry.  Also 80% of the people w/ hep c are undiagnosed, so if you've got it its best to be diagnosed so you can monitor, or treat, and lead a healthy lifestyle.  Good luck and keep posting.  Mary    You'll find people here knowledgeable, helpful and truly caring... we're with you

[PennieLane]

Thanks guys, actually the physiology lesson makes me feel better!!  hopefully its not my liver.  Today I am trying to take a new approach and convince myself that it will be negative until I hear otherwise, atleast I will be able to make it through the next days.  I guess my biggest fear isn't even dying, its having to live through it, and tell my friends and family, and all of the side effects, i really just don't want anyone to know, but on the other hand this is not something I can do by myself.  Well thank you for all of your help and I will let you know how everything comes out!!

Thanks again

[medicmommy]

My apology for the physiology lesson...I've been there...Having Hep C is like having any other chronic disease...life goes on...you do what you have to to stay healthy...When I was first diagnosed, I felt contaminated...I'd had a "false positive" test 2 years before that, but unexplained liver enzyme elevations..My hep c came from a contaminated needle stick while I was working on a cardiac arrest patient who was +...I thought I was in the clear and then it showed + in a presurgical screening...I had myself a good old fashioned pity party for about 2 weeks (I cried, was depressed, felt sorry for myself, even did some grieving, and was mad...)..and then I started educating myself, and realized, I wasn't in any immediate danger of dying...I had time to think and plan...And so I have...That was July, 07...I had my gallbladder out, as it was causing all kinds of problems and it was stressing out my liver...I them tried some nautropathic stuff, with limited success, but also got in much better health while I did so...And now I've just started treatment...Once I get this done, this chapter of my life is over, and I can start anew...Life's little things are a lot more important now...Good luck, and may you not have this...But if you do, we are here...

[medicmommy]

Well, your pain could be a good news/ bad news thing...First of all, if it is your gallbladder, and it is obstructing(having an attack), you will have multiple symptoms...Intense pain to the upper abdomen just under your ribs that may radiate up to your right shoulder or shoulder blade...You will probably have constant nausea, possibly vomiting, maybe a fever, burping, maybe light yellow stools (indicates no bile is getting through from the gall bladder)...Maybe even brownish urine...If you have these symptoms, go to the emergency room! Too many people wait too long, and end up having a horribly infected gallbladder that endangers their life..
Just so you know, the liver can only sense pressure...Pain like this is usually caused by something nearby it...

[PennieLane]

Thanks guys, it means a lot to me that i have someone to talk to and you guys actually listen.  Today the symptoms are getting worse, i couldn't even eat and the stabbing pain in my side is worse.  Hopefully its my gallbladder, I'm getting an Xray on monday so we'll see.  Not knowing is driving me crazy, just afraid that knowing will drive me insane... But im going to try not to panic until I know... thanks again for your support and I will let you know when I know anything, because heaven knows i will need someone there!

[orphanedhawk]

I didn't know I had hep C until after 30 years and I had none of your symptoms. Does this mean you don't have Hep C?  The only way to tell is by getting a blood test.
Do it and ease your mind.

[Deb_c430]

Wonderful advice Matt,  

I would add very often are more of afraid of what they imagine or are apprehensive about,  keep taking the steps and find out

Sounds like you are getting your facts together, and you may find it is your gall bladder. it can raise your levels.

I have lived with this since I suppose the mid 80's.

I have a good life,  great family, I also have an illness I need to take care of.

Don't panic and as Mark said get re tested.

Keep you in my prayers and let us know or write or freak, we have all been there!

Deb

[mcmcorp45]

I hear what you say! I feel the same way, its a difficult situation for all. However I think you will find all the positive words you need here! Everyone is very helpful here and we all bring a story and experiance we can all learn from. My words of advice are, never give up hope! Nothing means its over for anyone, tak it day by day. The fact that you reached out for help is great and will make you feel better. No one will say this is an easy thing to deal with, but we all deal with it in a diffrent way and in no way should you feel ashamed or have any bad feeling towards yourself over this. Right now I think you should take a few step back and collect your thoughts, and wait until a test comes back. No matter what the test says you will get through it, tell yourself that everyday! And ask for help always. My prayers are with you this week, and we are all here to help! Please let me/us know how everything is and follow up.

Your physical symptoms can be many things, and it seems like you are on the right track to find out what is wrong. HCV has "typical" symptoms but everyone is diffrent. I have had it for 22 years ( my life ) and I only know because I gave blood to the red cross. If you are worried about stuff your mind can trick you into thinking you have anything, but you are correct to follow up on your symptoms and I would say getting tested again is a good thing but it could always be somthing else.

God Bless,
Matt

If you to talk more or let it all out contact me! We are all here to help