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My doctor for hepatitis does not see me becaus my bloodwork looks good.
I tested positive for HCV RIBA test and reactive to the HCV antibody screen in 2003. I believe I was infected almost 20 years ago. I was referred to a specialist who saw me once, checked my ordered blood work. The blood work could not show enough ?not sure? what to tell what type of hepatitis I had but he said it was probably hep type 1. After that I call him yearly to ask for blood work. He is the local specialist in the area and I must get a referral to see him but he does not want to see me because of the blood test results.
Last time I called, the nurse said that as long as my numbers are so low, I have nothing to worry about. Should I look for another doctor or call and insist on more attention or
be happy and trust that the virus is inactive? I don't understand the test and I never received any of the results, only over the phone. Shouldn't the doctor's office be keeping my records as an active patient? And how many years do I need to be tested for?
Last time I called, the nurse said that as long as my numbers are so low, I have nothing to worry about. Should I look for another doctor or call and insist on more attention or
be happy and trust that the virus is inactive? I don't understand the test and I never received any of the results, only over the phone. Shouldn't the doctor's office be keeping my records as an active patient? And how many years do I need to be tested for?
hey, glad to help, I'm not on treatment yet either, I'm waiting to see if I can get into a trial...so I don't have a lot to say on treatment issues, and I guess you've sussed out that most people are on treatment here....but this stuff? I know something about...I was amazed at how little info there is for people, most people I have ever spoken with were so worried and heard so many silly rumors, etc...while youre waiting you might try finding all the various things that could help you...anything from temporary handicap permits, different organizations that help with food discounts, etc...there are a lot of these types of programs and people don't always avail themselves of them because they don't know about them...but ususally, once you get into one program, etc. they'll tell you about other programs, etc...
you might need some help with various expenses throughout the month, because, as you know, disability doen'nt give you a lot of money to live on...also, have you thought of support groups, etc.? sounds like you have so many issues, and I know a lot of guys have trouble sharing problems, ha ha! this could be helpful...when you get medicare, you'll probably be allowed 2 visits a month with a psychiatrist...if I'm not mistaken, see if you can find a psychiatrist out there who will do talk therapy along with prescribing meds, there are a few out there...anyway, best of luck to you, please let us know how you are getting along...if you have any questions, find me, though I don't come on regularly, I can always ask my friend for you...
you might need some help with various expenses throughout the month, because, as you know, disability doen'nt give you a lot of money to live on...also, have you thought of support groups, etc.? sounds like you have so many issues, and I know a lot of guys have trouble sharing problems, ha ha! this could be helpful...when you get medicare, you'll probably be allowed 2 visits a month with a psychiatrist...if I'm not mistaken, see if you can find a psychiatrist out there who will do talk therapy along with prescribing meds, there are a few out there...anyway, best of luck to you, please let us know how you are getting along...if you have any questions, find me, though I don't come on regularly, I can always ask my friend for you...
I have a lot of time on my hands and I'm getting ready to start treatment so to put it mildly, I have a lot of time to worry and that's what I do. My quality of life would be so much better if I get SSec. I had to file bankruptcy when I lost my job so I don't really have any debts aside from my Subaru. I really loved that job. But I started to decline rather rapidly. I had over a twenty-percent absentee rate, I often had to be taken home because my pain meds (My back is toast)were so intense I was a veg and I was missing appointments and beginning to lose my professional edge. I want to travel I want to enjoy the last thirty-percent of my life and I want to put this horrible experience behind me. Having said all of this I hope you understand just how much these few little paragraphs you have sent to me mean. In just a couple of days you have put me at an ease I haven't felt for some time. All I can do is say THANKS and I am sorry I can't buy you a cold pint, but I guess those are from the past now. Anyhow, thanks again for your simple gesture, I knew this was a good chat room. Craig
one thing I forgot to tell you, this whole thing about making people keep on appealing over and over, etc. is a way to winnow out people...and to be fair, just imagine if they awarded every person who applied for it, they'd bankrupt the system....
they figure, that the people who are the slackers, and are just trying to get on the dole without any REAL problems, will get discouraged by all the red tape, waiting, hassle big time, etc...and I'm sure many people do drop out, because on your own you don't know how the system works, and even what you pointed out, the lawyers aren't really forthcoming most of the time as well...
So they figure, if youre going to go through all this work, and the attorney figures you have a good case, you must be legit, etc...and most good attorneys won't take your case unless they think you can win, since they are getting theirs on the back end, you have a lot of pertinent issues you are dealing with that keep you from working...so really, feel fairly secure you'll win your case...
they figure, that the people who are the slackers, and are just trying to get on the dole without any REAL problems, will get discouraged by all the red tape, waiting, hassle big time, etc...and I'm sure many people do drop out, because on your own you don't know how the system works, and even what you pointed out, the lawyers aren't really forthcoming most of the time as well...
So they figure, if youre going to go through all this work, and the attorney figures you have a good case, you must be legit, etc...and most good attorneys won't take your case unless they think you can win, since they are getting theirs on the back end, you have a lot of pertinent issues you are dealing with that keep you from working...so really, feel fairly secure you'll win your case...
YOU guys ROCK. I have been worried about this for almost a year, it was last August when I first applied. I really can not work. I can not sleep for longer than one - one and a half hours at a time before I wake up in horrible pain trying to find a comfortable position. I worked as a professional geographer and I do have a masters. I can not concentrate, I lost my last job because I was screwing up left and right, forgetting appointments and forgetting how to do the simpliest data queries. I have fatigue, forgetfulness, I search for words, I have a problem with spastic movements and jerking. I take a lot of narcotics for pain and they take their toll as well. It's basically the Hepatitis but more importantly it's my chronic back pain. I have had associated depression for seventeen years and have been hospitalized three times due to suicidal idealation and having a plan to move over to the other side. THanks
Bill 1954 is right. My situation is very similar to yours. Normal LF tests. Standing orders to check them every 6 months. 2 ultra sounds, both show no damage. I'm back with Primary care doc from 10 yrs ago due to move and decided to pursue at least getting more info after finding this forum. First thing is PCR to see if you cleared the virus. You will always have antibodies. I have both B and C antibodies, but am only carrier for C. My VL is 539,000. If it is <50, you are considered negative (one of the 15-20% who cleared the virus on their own). So, get the PCR if you haven't already or get the copies of you bloodwork, and get another doctor if you have an active infection. I go to GI in July for intitial consult and will go from there. Best of luck to you.
Hi, have you tried getting a good social security disability attorney? one that's been in business a long time and knows the judges, etc. You can ask what there loss/win ratio is, if it's more than 80% win, go for him/her...a person like this usually wont even take you if they don't think they can win...
one my best friends is a lawyer like this so he tells me a lot...many times a person will get it on the first try with an attorney when a person who is advocating for themselves will often be turned down 1, 2, and 3 times, a lot depends on the judge and their discretion, I have a freind who advocated for himself and was turned down on the first try and he had full blown aids...once in awhile a person advocating for themselves will get it though, though not often...
the attorney will take a percentage of your back pay award so you don't have to pay anything upfront...make sure that's how it is...
I also know that just having hep c isn't the deal clincher, it's what the hep c has done to you that keeps you from being able to support yourself and leaves you disabled...this is what you need to emphasize, depression, anxiety attacks, all the different physical symptoms, severe fatigue, etc...hope this helps...
one my best friends is a lawyer like this so he tells me a lot...many times a person will get it on the first try with an attorney when a person who is advocating for themselves will often be turned down 1, 2, and 3 times, a lot depends on the judge and their discretion, I have a freind who advocated for himself and was turned down on the first try and he had full blown aids...once in awhile a person advocating for themselves will get it though, though not often...
the attorney will take a percentage of your back pay award so you don't have to pay anything upfront...make sure that's how it is...
I also know that just having hep c isn't the deal clincher, it's what the hep c has done to you that keeps you from being able to support yourself and leaves you disabled...this is what you need to emphasize, depression, anxiety attacks, all the different physical symptoms, severe fatigue, etc...hope this helps...
My blood work is great only one test is slightly elevated...anyway I went to a new GI doc and he wouldnt treat me since I didnt complete the tx 2 yrs ago. I had no help my boys were just teens and I lived on 4 acres that needed mowing in the 90+ weather in the Summer. I too have clinical depression that I am being treated for with of all things cymbalta..(not a liver lover).. I got into a huge disagreement with this doctor about being treated..He gave me some story about if I wasnt diabetic and asked for inselin he wouldnt give it to me cuz I could sue him..what a crock..I for one do have HEPc and I am not asking for something I havent already tried so I know what to expect. So, I went back to the doctor who treated me 2 yrs ago.. I wasnt sure he would take me back because of my lack of following through. He said even if my liver tests were ok that doesnt mean that I am not progressing. He had seen people with normal functions and bad byopies. His thing is fix before it breaks. I have had this since 1993 I believe. My load went from 148k a year ago to over 4 mill now. Yes I had been drinking which I have now stopped. My hubby is back we moved to a smaller place and my boys can drive me around now..Good luck with everything..hang in there..geri
If you leave the virus un-treated you could be responsible for passing it to another person. You may not become clear of it even with treatment but the first thing is to find a doctor to take you on while you have such good numbers. If it doesn't work at least you have tried. That is the story I tell myself Tres. Dale
(From post above)
Dog_lover, I honestly have no idea what the SSI entitlement is based upon. I applied in November
Dog_lover, I honestly have no idea what the SSI entitlement is based upon. I applied in November
hey, my friend's been doing this for years, just spoke to him, you'll get it, and you'll get a slammin reward too cause they gotta go retroactive from when you first applied, guess you already know this, yeah, too bad most people dont get an attorney first off the bat, so they don't have to go through all those refusals...with all you have going you'll get it...I'd be very surprised if you didn't...I hope you'll feel better soon, at least not having this stress over your head would prob make you feel better at any rate...
Bill I can not tell you how encouraging your post is to me. Here's my claim to SS:
Chronic low-back pain. Inability to walk for more that five minutes, pain must be managed using an indwelling pump that injects morphine into the interthecal space of my spine 24/7. Have been judged to be fully disabled by VA due to back disorder. Cost me wife, job, house and bankruptcy in 2004.
Chronic depression and anxiety disorder for about nine years. Currently thought to exacerbate other conditions and after nine years still have not been able to fully control this problem. Was hospitilized in 9/2004 for possible suicide.
Lower extremity edema, initially thought to be caused due to cardiac ineffeciency, now being considered a side-effect of hep-c.
Hep-C unknown source, probably 20 year history. Genotype 1b, viral load seven-million, grade three, stage two, liver CAT Scan revealed fatty deposits to liver. Should start treatment in Aug/Sept.
Low testosterone probably due to long-term use of opiods.
Badly fractured wrist from MCY accident in 9/2004. Have had five surguries to date and one more scheduled (Depending on when or IF VA decides to treat hep-c) Unable to stabilize wrist. Joints have been destroyed by scarring and arthritis and will have total fustion rendering the wrist immobile.
This one is the kicker, GOD has a sense of humor, Myoclonic Jerks. These little dandys cause you to twitch. Usually not involving the face and wearing baggy clothes will hide most of the jerking but it's getting worse, it's dangerous and humilating.
THat's about it Bill, I have been turned down twice and I have requested a hearing that I have been told is 18-20 months out. I get a small VA pension but I don't know how I'm going to make it. Add to that my depression and then the interferon treatments I may not survive this mess. Thanks for the info and please take care.
Craig
Chronic low-back pain. Inability to walk for more that five minutes, pain must be managed using an indwelling pump that injects morphine into the interthecal space of my spine 24/7. Have been judged to be fully disabled by VA due to back disorder. Cost me wife, job, house and bankruptcy in 2004.
Chronic depression and anxiety disorder for about nine years. Currently thought to exacerbate other conditions and after nine years still have not been able to fully control this problem. Was hospitilized in 9/2004 for possible suicide.
Lower extremity edema, initially thought to be caused due to cardiac ineffeciency, now being considered a side-effect of hep-c.
Hep-C unknown source, probably 20 year history. Genotype 1b, viral load seven-million, grade three, stage two, liver CAT Scan revealed fatty deposits to liver. Should start treatment in Aug/Sept.
Low testosterone probably due to long-term use of opiods.
Badly fractured wrist from MCY accident in 9/2004. Have had five surguries to date and one more scheduled (Depending on when or IF VA decides to treat hep-c) Unable to stabilize wrist. Joints have been destroyed by scarring and arthritis and will have total fustion rendering the wrist immobile.
This one is the kicker, GOD has a sense of humor, Myoclonic Jerks. These little dandys cause you to twitch. Usually not involving the face and wearing baggy clothes will hide most of the jerking but it's getting worse, it's dangerous and humilating.
THat's about it Bill, I have been turned down twice and I have requested a hearing that I have been told is 18-20 months out. I get a small VA pension but I don't know how I'm going to make it. Add to that my depression and then the interferon treatments I may not survive this mess. Thanks for the info and please take care.
Craig
I'm in Oregon, my attorney's part of a group specializing in this kind of law and his name is; David B. Lowry. I can not tell you how this information has made this already crappy day great. I think my attorney's good but he never returns calls of for that matter he never replys to email. I have had more encouragement from you today than I have with my attorney the whole time we have been doing this, THANKS to your friend too!
I appreciate very much your taking time to address my concerns. I have hired an attorney and I think he used to work as a SS attorney so he knows what they want to hear. We have an agreement that he will only collect if he wins and then it's twenty-five percent of the award. He's purported to be the most cynical in the office and he thinks I have a great case. I have the support of four physicians, a Psychiatric Mental Health Nurse Practitioner and a couple of social workers. I haven't worked since April 2,2004. I was solo when I first applied and hired this Atty just prior to getting the second refusal. We have appealed and are awaiting a hearing date sometime in the next couple of years. I can't help wondering if they couldn't do something to expedite this but are waiting so they get a larger settlement. As I mentioned my chief complaint is back pain and we are talking drill bits into the spine pain, crying into your pillow pain even with morphine. I don't know what else I can do!
BTW, did you actually go through a hearing of did your buddy work his/her magic for you outside of the hearing's office? If you went through a hearing did you have an answer by the conclusion of the hearing or did you have to wait? Was the adjuticator a nice person or was the hearing confrontational? Are you eligible for medicare?
Thanks so much for answering my query!!!
Thanks so much for answering my query!!!
I'm not on disability, it's just that he's one of my best friends so I started helping people in a hep c support group (with my less then second hand experience, ha ha)and he kept telling me things and I kept learning for my friends, etc. So I've gotten to know a bit...
Firstly, don't worry about the guy not answering you, these guys figure theyre getting what, 4000? and up for this, which isn't much for an attorney, not in their minds anyway, so what they do is pawn off any questions you might have to their secretaries, who usually know a ton of stuff, and then they aren't always the most helpful either...don't feel like youre in the dark, looks like you've done your homework by getting the all the labs, the docs, the psychiatrists (head problems count a lot to these guys) if I were you, you might even write a letter saying what the average day is for you and get all these people to sign it, that's a personal touch...they also have surveys that ask these questions, as your lawyer's secretary for it...don't worry, I'd be very surprised if you didn't get it, you will...
they figure just looking over your records and showing up to your hearing is enough work for that kind of money, and they know what to say and where to delegate, but they are really not doing all that much...and besides, to my way of thinking? It's a system thing, and they are all in the system, and they figure if youre a paying customer to the system (by getting an attorney), you should have a better shot at winning your settlement, that's why you have a much better shot with an attorney, that's my opinion from all that I can see...
I mean, you could also get one of those advocates that do it for free and everything, but they ususlly don't know the judges and everyone in the system...Capeesh? Still, like Bill, there is a possiblity that you can win without representation, but just a possiblity...
once you get your settlement, you'll get Medicare, it depends on how long you worked and how long you paid into SS, but if you've worked that recently, you'll get SS, SSI is a different deal, and that's usually for people who haven't paid into SS, it's complicated...once you get Medicare, you'll also get Dental insurance too, they only pay for cavities and things that aren't cosmetic, except if they are in front of your mouth, they will pay for root canals and crowns there (all root canals usually) they also have new drug plans now where they pay for a lot of drugs...your antidepressents, etc.
You should also see about applying for In Home Supportive Services, google it and you'll see what that is...
as far as your hearing, don't show up all dressed up and looking like youre going to the dance if you know what I mean...if youre lawyer's any good, it'll be fast and pretty direct, a few questions and your out-a-there...don't sweat it...just be honest for the most part, youve got plenty of issues and they do keep you from working, so youre not getting away with anything, that's why this insurance is there, you might try looking at Janis and Friends site, they also have plenty of information on gaining disability with hep c last time I looked...
Firstly, don't worry about the guy not answering you, these guys figure theyre getting what, 4000? and up for this, which isn't much for an attorney, not in their minds anyway, so what they do is pawn off any questions you might have to their secretaries, who usually know a ton of stuff, and then they aren't always the most helpful either...don't feel like youre in the dark, looks like you've done your homework by getting the all the labs, the docs, the psychiatrists (head problems count a lot to these guys) if I were you, you might even write a letter saying what the average day is for you and get all these people to sign it, that's a personal touch...they also have surveys that ask these questions, as your lawyer's secretary for it...don't worry, I'd be very surprised if you didn't get it, you will...
they figure just looking over your records and showing up to your hearing is enough work for that kind of money, and they know what to say and where to delegate, but they are really not doing all that much...and besides, to my way of thinking? It's a system thing, and they are all in the system, and they figure if youre a paying customer to the system (by getting an attorney), you should have a better shot at winning your settlement, that's why you have a much better shot with an attorney, that's my opinion from all that I can see...
I mean, you could also get one of those advocates that do it for free and everything, but they ususlly don't know the judges and everyone in the system...Capeesh? Still, like Bill, there is a possiblity that you can win without representation, but just a possiblity...
once you get your settlement, you'll get Medicare, it depends on how long you worked and how long you paid into SS, but if you've worked that recently, you'll get SS, SSI is a different deal, and that's usually for people who haven't paid into SS, it's complicated...once you get Medicare, you'll also get Dental insurance too, they only pay for cavities and things that aren't cosmetic, except if they are in front of your mouth, they will pay for root canals and crowns there (all root canals usually) they also have new drug plans now where they pay for a lot of drugs...your antidepressents, etc.
You should also see about applying for In Home Supportive Services, google it and you'll see what that is...
as far as your hearing, don't show up all dressed up and looking like youre going to the dance if you know what I mean...if youre lawyer's any good, it'll be fast and pretty direct, a few questions and your out-a-there...don't sweat it...just be honest for the most part, youve got plenty of issues and they do keep you from working, so youre not getting away with anything, that's why this insurance is there, you might try looking at Janis and Friends site, they also have plenty of information on gaining disability with hep c last time I looked...
Thank you all. I have no one to talk to about this. My husband never wants to discuss, better swept under the rug. It's hard with the hmo insurance today to get guidance and referrals. But the feedback I received encourages me to get the answers that I worry about and to make an active effort to find another doctor who will have time to see me. at the first and only specialist appointment the doctor referred that at my age it would be beter to wait as long as my levels were low. ( I didn't think 46 was that old!) I just need a doctor who can tell me if I'm cleared or not.
also, forgot to say, youre in a lower traffic state as far as people applying for hearings, as compared to say, California or New York, so you shouldn't have to wait more than a year, my friend's just guessing...
one more thing I forgot, ha ha! you're attorney will know really soon after your hearing...
hey, just spoke to my friend again, your hearing date will come before a couple of years he thinks...prob within one, what state are you in?
I am using the VA medical system where a "Team" decides if they are going to treat or not treat. My type is 1b, load seven-million grade III Stage II. I suffer from chronic depression and anxiety. On two separate occasions I have been denied treatment because the team feels I'm a risk due to my chronic depression. Without going into a great deal of rhetoric, suffice it to say that I have had two letters written on my behalf from VA providers supporting my claim for total-permanent disability. In these letters my providers state that I am stable and adhere closely to treatment regimens. I wrote to the "Team" with these letters of evidence along with other reasons I should be treated and they didn't even respond. My physician-tasked with my liver as no time responded to my queries. She gave me no encouragement, no information on how long I could hold out or what kind of damage could occur. The climate of the federal government seems to be a universal "we ain't telling you anything" line. I can not afford to go outside the system right now. I'm wondering if I should go to the newspapers?
Hi Tres,
Although you tested positive for HCV antibodies in 2003, keep in mind that approximately 15-20% of us clear the virus spontaneously and don
Although you tested positive for HCV antibodies in 2003, keep in mind that approximately 15-20% of us clear the virus spontaneously and don
DUMP HIM!!!! Dyce man and I been reading lately, and the indication is you TREAT NOW, WHILE ALL YOUR BLOOD WORK IS GOOD, makes it much more likely that you will clear!! I was at 200,000 ten years ago, now its 2,890,000. If you have an active infection, HCV RNA positive, then you need to worry. Go to the Drs. office and ask for ALL COPIES of your bloodwork. You paid for em, they belong to you. And they are quite used to it, they won't bat an eye, will make you sign a release, but thats it. Then you can post your stats, get some advice here, and know where you stand.
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