Diagnosed 1 Yr Ago And Still Spinning Wheels

I was diagnosed w/Hep C (1a, viral load between 1 and 2 mil, not bad I guess) after I had this weird episode where I suddenly began slurring my words and lost my ability to walk. It passed quickly, but I did go to ER for it. They couldn't figure out what had happened so they sent me to a neurologist who tested me for it. I still don't know why he did that-I kinda think it's because I have some horrible tattoos I got in my youth and he assumed I should be tested...whatever reason, I was positive. Sooo...here I am, a year later.

I was sent to the "best" hepatologists/gastros in my area for some information and answers. What I got was the nurse telling me there was no need to retest my year old results, we know you have it, so lets get you into a study. What she didn't do was read the study first and see that I didn't qualify for it because I'm overweight. I wasn't very happy with the dismissive attitude and childish "Hep C handbook" (although it helped my husband understand some things better lol). They kept on trying to sign me up for studies for months after my appointment and finally another nurse says "oh, you don't qualify unless you lose 20 lbs, at least". I ask about going ahead with treatment and she says "it's super expensive, like $1,000 a month...you'd be better off to lose 20 lbs and do a study". I've been unemployed for 2 years now, so that number scared me to death! I've asked around about that cost quote, and found that it's not nearly that expensive (I have BCBS TX). But now, I'm really put off of any doctor so I'm just kinda seeing what happens. I've not had any other testing besides the first one and never had biopsy or sonogram done.

To top it off...my family (adult kids also) was concerned for my diagnosis but over the past year they've not even bothered to come see me or call to ask how I am. I have called them and asked how they are, opening the convo up for some kind of something (not trying to get sympathy from them, just feel like family should take more of an interest I guess) but the only converstaion I've really had was w/my mom saying telling me one of my cousins has it, has had it longer than me and he's just fine so what am I worried about. Thanks mom...way to be supportive.

I guess I'm just lost. :(
bgyldy bgyldy
4 Responses May 22, 2012

I know how you feel.I get this all the time from my family oh you willl be ok there are lots of people who have it.But thats not my issue a feel so nasty and know people dont want to be around me any longer since i found out. I just feel like hiding in a room forever. Which is pretty much what i do now.

so,stroke like symptons are a clue to hepc?was in the hospital twice thinking<br />
i was having a stroke.it was a year after the 2nd time thatr i found out i had hep c.

I don't know what was up w/the stroke like thing. I never got an answer on the cause.

I guess im lucky that a least my daughter cares a lot and checks on me often.I will be glad<br />
when,yet dread the day i can start treatment

Huggs my kids are so supportive too. Find yourself I'm finding me hang in there!