newly diagnosed and terrified

[dharmaqueen]

hi. this groups seems extremely knowledgeable. so after moping for 2 days, i decided i should reach out for support and/or information. all i can do since my doctor told me Friday that i'm positive for antibodies is read about this disease and it's scaring me to death. on top of that, the new primary doctor who had my blood drawn Friday is out of town for the week, so i feel really alone. he says they should know by Thursday if i have active infection. they'll tell me on the phone if it's negative, but if it's positive they'll tell me i have to talk to him when he returns the following Monday.

my main issue is i'm having fatigue right now and i don't know what's going on with me. i'm also epileptic - i get atypical partial seizures that take a month to recover my energy from afterward. they are debilitating. i feel close to seizure a lot lately. i suspected yesterday that i have the hepatic encephalopathy, because i've had insomnia for about a week, and fatigue and brain fog. today i waited too long to eat breakfast, so i lied in bed for an hour or two afterward because i was too weak to want to get up at all.

it's also a very long story how i got diagnosed and how i got worse lately. and i have raynaud's disease and my fingers are absolutely freezing for some reason, and the heat is off for the summer already here. so anyhow, my mind is going and going, thinking - is it a blocked gallbladder? (i'd gotten pale stools while taking turmeric recently, which went away when i stopped.) is it ammonia buildup (encephalopathy) from my liver being bad? will they believe me if i go to ER or urgent care? (i have been neglected and worse by doctors for years, which probably is why nobody listened to me for years when i asked what is wrong with my liver and why am i allergic to everything i take)...

so, with doctor out of town, no reliable history of good medical care even for my seizures or doctors who listen to me or understand that i have a strong intuition and understanding of my body, and a week or so to wait for my titer results, i'm miserable. most of all, i want to know if any of you had this ammonia and toxin buildup in the brain... and if you have any layperson suggestions as to what to do. i'm considering going to an urgent care or ER tomorrow, as i read they can give you stuff to get the ammonia out. thanks for any feedback.

[Mary4now]

dharmaqueen,
Please don't worry, first of all it doesn't help anything, that is a huge lesson to learn takes a lifetime, so get started.  I worrried like a banchi at first
Second when I was diagnosed as you with hep c antibodies its like my whole life flashed in front of me, then when I finally got to see the gastro provider skilled in hep c and she said right off the bat, this is not a death sentence.  There are treatments and there are new treatments in the works, not sure how quickly they will be available, but there are trials to get in with...... Foremost you have to get all the information to determine your gentotype important for treating, and a biopsy of the liver (very easy for most people, the biopsy itself takes minutes, its the prep and after that takes time)  also your blood tests to check all your blood levels, all those components will give you a better idea whats going on.  You may not even have the virus, you may only have the antibodies, its possible so calm yourself down.  Most people die with the virus not from it.  Once you get your vital information then you can figure the best course.  I am waiting for a little bit because I am genotype 1 (harder and longer to treat) and my liver damage is minimal right now grade 1 stage 1, and my life circumstances are not ripe for me to treat.  I hope I know when that will be and I hope its before I get more damage.  I think I've had the virus for 30+ yrs. but theres no way for me to be absolutely sure.. I will be monitoring the effects of the virus as best I can.... blood tests in another month...
practice the dharma for the time being and probably good to do from now on...
Blessing, best wishes for a good outcome... M4now

[dharmaqueen]

thank you. and yes, the doctor did say that the results don't necessarily mean anything. i just wish i didn't have so many long-term symptoms to go with the test results.

[dharmaqueen]

thanks! i do need to relax, or i'll just make myself worse. and i'm glad you like the name, though i think maybe i should have called myself "dharmaslacker". :P

[copyman]

welcome, try and relax. don't forget that there is still a chance you only have the antibodies and your body has fought off the virus. If not that lucky then this forum is the right place for information and support. good luck on the test results.

[desrt]

Welcome. Just a thought off the top of my head: your posting seems way too lucid for someone with encephalopathy. Slow down, take some deep breaths, and do some reading in the archives of this site on some of your topics of concern. This is a slow progressing disease and it's doubtful anything is going to change between now and when you get your results back. Love your chosen name, by the way.