Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Hi Marsha. I only take 2 150's a day & they dont bother me anymore then the Neurontin did. Good thing I dont drive tho as they do make me drowsy & to easy to drop off for a little bit every now & then! No they dont make me fill high at all, but as we know any medicine will efect different people in different ways. Jim... > jim, i have been taking lyrica for about a month. i think it has helped > with the nerve pain from my back L3,4,5,S1. but i feel very stoned out and my > whole demeanor has changed. i don't feel like myself. have you felt this > way. i feel high all the time. especially zoned out right after i take the > pill. i take 3 > 150 mg a day. i would love some feedback from anyone else on lyrica. > thanks, marsha > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 cheer up friends, Pamela is living example. Just relax. It is necessary not to surrender before the disease. best of luck saleem Pamela <pwac-ed1952@...> wrote: Totally agree, I was diagnosed with Hep C over 30 yrs ago too and I have had very few problems with the disease. I did try the old intron A and Ribitrin treatment but I was a none responder to it. Now I just go in every six months for blood work and every four years for a biopsy. No big thing I feel fairly good most of the time occassionally I have joint pain, but heck that could be from old age. LOL. No need to worry about it I figure. Pam in Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 Pam, I don't want to be pessimistic. However, there are consequences to untreated HCV. I have cryoglobulinemia, which has been discussed here. It may have caused the peripheral neuropathy that left me disabled now for 4 months. I'm making progress with physical therapy & medication and now can walk without a cane, but it's been a tough haul and I have a long way to go. I told the doctor that I always thought that the hepatitis would kill me one day - in the future - but I never thought it would cripple me first. New to group Totally agree, I was diagnosed with Hep C over 30 yrs ago too and I have had very few problems with the disease. I did try the old intron A and Ribitrin treatment but I was a none responder to it. Now I just go in every six months for blood work and every four years for a biopsy. No big thing I feel fairly good most of the time occassionally I have joint pain, but heck that could be from old age. LOL. No need to worry about it I figure. Pam in Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 ....i don't think they new it existed 30 years ago. > New to group > > > Totally agree, I was diagnosed with Hep C over 30 yrs ago too and I > have had very few problems with the disease. I did try the old intron > A and Ribitrin treatment but I was a none responder to it. Now I just > go in every six months for blood work and every four years for a > biopsy. No big thing I feel fairly good most of the time > occassionally I have joint pain, but heck that could be from old age. > LOL. No need to worry about it I figure. > Pam in Indiana > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 Welcome to the site. You'll find both knowledge and compassion here. Don't feel let down-your doctor was probably just as surprised as you are at the progression of liver damage. It is so normal to to be worried and sometimes it's like an emotional roller- coaster. Please keep us posted and vent if it helps. W. lindydunster <dunsterl@...> wrote: I was diagnosed 3 years ago with AIH. Previously diagnosed with SLE 20 years ago. I was told not to worry about the AIH as it was caught early and it would just be monitored. Well, I have just had my second liver biopsy and now I am told that about 20 years damage has been done in just 3 years. I have lots of scarring and my liver is on the verge of being cirrotic. I now have to wait till my July appointment to find out what is going to be done about it. Sorry if this sounds like a whinge but I just need to vent. I feel let down and very concerned and just dont have anyone to turn too. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 Hi and welcome to the group. I am also new here and was diagnosed 3 years ago as well. What is SLE? Is that what caused your liver to scar? I also had a biopsy done 1 yr ago but my liver is not scarred very much and I am on 50mgs of Imuran and no prednisone. Have you gotten a second opinion from another doctor? Sometimes that helps, especially if you say you have to wait till July. I dont know about you but I would hate to have to wait till then to find out what is going on.....it is only going to make you worry. You can email me to vent if you wish......I know just how you feel as this type of disease can be very stressful and depressing but they have so much knowledge and meds now a days so I guess we can be thankful for that because years ago it was not like it is today in the medical field..... Best to you and hope all goes well.... > > I was diagnosed 3 years ago with AIH. Previously diagnosed with SLE 20 > years ago. I was told not to worry about the AIH as it was caught > early and it would just be monitored. Well, I have just had my second > liver biopsy and now I am told that about 20 years damage has been done > in just 3 years. I have lots of scarring and my liver is on the verge > of being cirrotic. I now have to wait till my July appointment to find > out what is going to be done about it. Sorry if this sounds like a > whinge but I just need to vent. I feel let down and very concerned and > just dont have anyone to turn too. Thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 Lindy Welcome to our group. There are a lot of people in this group who are very knowledgable. I have diagnosed with cirhosis of the liver in '97, The final diagnosis was Fatty liveer disease, but it has to do with the autoimune system somehow, because I have all other symptoms too, like Discoid Lupus, Asthma, Diabetes, Arthritis, and maybe even others that I do not pay much attention to as they are in the background. I expected to be dead by now or at least have a liver transplant. But somehow I managed to survive this long, and interestinly I feel better now than I have for a long time. My gastroentologist used to tell me " your liver is quite large and your spleen is enlarged too " . The last time I saw him , he said " Your liver is SOMEWHAT enlarged " so I asked him " if that meant the liver is healing itself somewhat??? " He would not confirm, but he did say my spleen was OK, so something must be going on in the positive side! Chin up and keep track of what the doctors recommend. Get a second opinion if you are not satisfied. And have faith and humor! I am convinced that the Milk Thistle from Natural Wellness has a lot to do with my seeming improvement. On the other hand it could be in my head. I have been taking Ursodiol for the last 6 years, but this last time, my doctor said, that according to research it does not do any good for my condition. So I asked him if it is goiong to hurt me, he said no, so I continue to take it just in case. Clara from OR. lindydunster <dunsterl@...> wrote: I was diagnosed 3 years ago with AIH. Previously diagnosed with SLE 20 years ago. I was told not to worry about the AIH as it was caught early and it would just be monitored. Well, I have just had my second liver biopsy and now I am told that about 20 years damage has been done in just 3 years. I have lots of scarring and my liver is on the verge of being cirrotic. I now have to wait till my July appointment to find out what is going to be done about it. Sorry if this sounds like a whinge but I just need to vent. I feel let down and very concerned and just dont have anyone to turn too. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 Hi and welcome. I am and I have had AIH since '96. At that time I wasn't expected to live more than a week or 2.As you can see it is a lot of years later and I am still going strong. I also have fatty liver, cirrhosis and other things but my doctor says that if I am going to get a disease this is one of the best because it can reverse itself and my liver can heal. I take only Imuran now 100mg. Until October I also took Prednisone which I really hated but needed. It is discouraging when we get bad news but do as the docs say and keep a positive attitude. There will be many ups and downs as we all know and any time you want to vent feel free that is what we are here for. Write any time the WV hillbilly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Thank you all for making me feel welcome. I just feel so angry that I did what the doctors said in the beginning and now they tell me that treatment should have started at the beginning. Now god only knows if treatment will work. Someone asked what SLE was. It is Systemic Lupus. I dont know about all of you but sometimes it seems easier to say whats not wrong with you. What do you think? Apart from Lupus and AIH I also have Raynards, and they think Sjorjons (cant spell) as well as CREST. See what I mean. Where I live it is not so easy to get a second opinion. Specialists are very thin on the ground. I know my specialist is good but even he said that I am " a complicated lady " and he is having to confer with a specialist on the mainland. Anyway it is nice to know that I am not alone. Good luck to you all. L Re: [ ] new to group Welcome to the site. You'll find both knowledge and compassion here. Don't feel let down-your doctor was probably just as surprised as you are at the progression of liver damage. It is so normal to to be worried and sometimes it's like an emotional roller- coaster. Please keep us posted and vent if it helps. W. lindydunster <dunsterl@...> wrote: I was diagnosed 3 years ago with AIH. Previously diagnosed with SLE 20 years ago. I was told not to worry about the AIH as it was caught early and it would just be monitored. Well, I have just had my second liver biopsy and now I am told that about 20 years damage has been done in just 3 years. I have lots of scarring and my liver is on the verge of being cirrotic. I now have to wait till my July appointment to find out what is going to be done about it. Sorry if this sounds like a whinge but I just need to vent. I feel let down and very concerned and just dont have anyone to turn too. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Most of us see our gastroenterologist every six months. If the doc felt that it was an urgent matter, he would have scheduled something sooner. It'll be ten years this fall since I was diagnosed and I've had 2 biopsies (only one was pretty painful). There were other things here and there-CT scans, etc. There are bound to be times that you'll feel as you do right now. We all go through it. It's hard to stay positive all the time. And that's why connecting with other people " in the same boat " is helpful. lindydunster <dunsterl@...> wrote: I was diagnosed 3 years ago with AIH. Previously diagnosed with SLE 20 years ago. I was told not to worry about the AIH as it was caught early and it would just be monitored. Well, I have just had my second liver biopsy and now I am told that about 20 years damage has been done in just 3 years. I have lots of scarring and my liver is on the verge of being cirrotic. I now have to wait till my July appointment to find out what is going to be done about it. Sorry if this sounds like a whinge but I just need to vent. I feel let down and very concerned and just dont have anyone to turn too. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 we are here to listen I hope things get better soon sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Welcome Lindy!! I too have AIH which was originally discovered in 1992, however, not diagnosed until 1999. Even at that time, I did not test positive, however, was put on medication (pred/Imuran) due to the first liver biopsy results. I went off the meds for about five years and now am in the early stages of cirrhosis with SLE as well. After 16 years with JP Chase, I have been on disability since February of this year. Last week I started the application process for SSDI. Once thing I have learned is that auto-immune diseases are very strange. They affect people so differently from one to the other. My mother had a very rare auto-immune lung disease along with a firm diagnosis with SLE without a positive ANA. Unfortunately, she passed away in 1998 at the age of 51. (by the way, today would have been her 60th birthday) My liver counts have gone down since beginning meds, however, last time checked are starting to go up. This is probably due to the faact that the prednisone dosage has been decreased. Not a very good sign. I also have been battling bronchitis for 3 weeks and have some fungal rashes due to the compromisation of my immune system. Despite the obstacles I face, I will not lose faith. As long as I can get out of bed, walk around and hang out with my family and friends I will continue to fight these conditions. I truly believe that the cure to all auto-immune disorders is coming soon. Sorry for the long winded e-mail. Guess I am in a reflective mood today. Take Care!!! > > I was diagnosed 3 years ago with AIH. Previously diagnosed with SLE 20 > years ago. I was told not to worry about the AIH as it was caught > early and it would just be monitored. Well, I have just had my second > liver biopsy and now I am told that about 20 years damage has been done > in just 3 years. I have lots of scarring and my liver is on the verge > of being cirrotic. I now have to wait till my July appointment to find > out what is going to be done about it. Sorry if this sounds like a > whinge but I just need to vent. I feel let down and very concerned and > just dont have anyone to turn too. Thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 , Just got back online after my hard drive died.I am too but go by Becki with an i. JRA is an auto immune disease and so is asthma.While JRA is not the cause they can go hand in hand. The scoliosis could be from the JRA/JIA or just be of (unknown cause) idiopathic. hugs Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Becki, I didn't realize that asthma was also an auto immune disease. Do you know how it works? Does the immune system start attacking the lungs? It is all very interesting and yet also very scary when it involves a loved one. --- & Elaney(12 poly) & Elyssa(7) Arthurnator@... wrote: , Just got back online after my hard drive died.I am too but go by Becki with an i. JRA is an auto immune disease and so is asthma.While JRA is not the cause they can go hand in hand. The scoliosis could be from the JRA/JIA or just be of (unknown cause) idiopathic. hugs Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 In asthma the immune system attacks the bronchi and the bronchioles - tubes that lead from the trachea to the lungs. When the inflammatory response starts in those tubes they swell and the air can't get through to the lungs. This is why, when Elaney is on prednisone, her asthma probably gets better - it gets rid of inflammation all through the body. In allergy-induced asthma the immune system reacts to the allergen in the airways and then " forgets " to stop reacting - attacking the airways. It does start to get less scary as time goes on - this coming from a 15-year vet of asthma. Hope this helps and good luck, (15, poly?) On 5/30/06, Pickering <rebpick1artist@...> wrote: > > Becki, I didn't realize that asthma was also an auto immune disease. Do > you know how it works? Does the immune system start attacking the lungs? It > is all very interesting and yet also very scary when it involves a loved > one. --- & Elaney(12 poly) & Elyssa(7) > > Arthurnator@... wrote: , > Just got back online after my hard drive died.I am too but go by > Becki with an i. > JRA is an auto immune disease and so is asthma.While JRA is not the cause > they can go hand in hand. > The scoliosis could be from the JRA/JIA or just be of (unknown cause) > idiopathic. > hugs > Becki and 7 systemic > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 Hi Arlene welcome to the group. Sorry to hear about your friends pain. You are a good friend to try and help her out. I kind of doubt she'd be a good canidate for laser surgery. They can remove the bulges BUT they may come back. I had some of the same symtoms she has with pain in my shoulders, upper back and neck And feeling like my head was too heavy for my neck to hold up. I ended up having a fusion from C5 - C6 over 3 yrs ago. The dr also did some work to clean up spinal stenosis which was the cause of some of my pain. It was no fun to feel like that and I am sure your friend is in a lot of pain. I pray she finds someone to help her soon. There are several people here who suffer from stenosis so she is not alone. You can check in the links section of the group and you will find several places to look for info that may help her. Again welcome to the group I will keep your friend in my prayers. Sharon Group Owner > > Hi Everyone, > > My name is Arlene and I am trying to do some research for my friend > who is in constant pain. She is 56 years old, has bulging discs in > her neck and I think some have shattered. Discs involved are the > neck ones 5, 6, and 7. She also has scoliosis since she was young > but nothing was ever done for it. She has pain that radiates from > her neck to her shoulders and says she feels like her head wants to > explode. Sandy, my friend, has had an MRI done which confirms many > things. She has a doctor's appointment in two weeks but if someone > cancels they will call her. She needs surgery. > > I started to do some research and found some information on laser > spinal surgery. I am wondering if anyone here has gone through this > type surgery. I found information on it at the following web > address: > http://laserspineinstitute.com/home.aspx > > It sounds like a good alternative, if she is a candidate. Anyone > here have first hand info on this type surgery or this doctor ( Dr. > St. Louis)? > > Thank you for any information. > Arlene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 Hi Sharon, Thank you for your response. My friend, Sandy, is not connected to the internet so I am trying to find out what options she has besides the traditional surgery. The Laser surgery I thought would be something she could look into while waiting to see her orthopedist in two weeks... or sooner if there is a cancelation. But maybe not. I know how valuable the internet is since I did a lot of research on the internet before I had my bilateral hip resurfacing done in South Carolina. I live in New York. I joined a group (SurfaceHippies) and learned a lot about the options I had. So I really appreciate there is a group for back and neck pain. Sandy lives in Pennslyvanina. If anyone here can give me some help on orthopedic mds in PA who you would recommend I would be most grateful. As I learned from my previous research, knowing a lot of information about the doctor and how experienced he/she is in doing a specific type surgery is crucial. Thank you for any information you can give me. And thank you again, Sharon, for your caring and informative response. Arlene > > Hi Arlene welcome to the group. Sorry to hear about your friends > pain. You are a good friend to try and help her out. I kind of > doubt she'd be a good canidate for laser surgery. They can remove > the bulges BUT they may come back. I had some of the same symtoms > she has with pain in my shoulders, upper back and neck And feeling > like my head was too heavy for my neck to hold up. I ended up > having a fusion from C5 - C6 over 3 yrs ago. The dr also did some > work to clean up spinal > stenosis which was the cause of some of my pain. It was no fun to > feel like that and I am sure your friend is in a lot of pain. I pray > she finds someone to help her soon. There are several people here > who suffer from stenosis so she is not alone. You can check in the > links section of the group and you will find several places to look > for info that may help her. Again welcome to the group I will keep > your friend in my prayers. Sharon Group Owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 hi arlene, thats great of you to do research for your friend. i do not know much about neck/shoulder pain; mine is in my lower back. i have had two surgeries but not that type. there are lots of people here and im sure someone can help. if your friend has access you should get her to sign up to the group, we have plenty of support and caring to go around. good luck and i hope your friend gets better. rob in va No greater burden can be borne by an individual than to know no one cares or understands. >From: " tylehalo " <tyle@...> >Reply-neck pain >neck pain >Subject: New to Group >Date: Thu, 08 Jun 2006 14:35:07 -0000 > >Hi Everyone, > >My name is Arlene and I am trying to do some research for my friend >who is in constant pain. She is 56 years old, has bulging discs in >her neck and I think some have shattered. Discs involved are the >neck ones 5, 6, and 7. She also has scoliosis since she was young >but nothing was ever done for it. She has pain that radiates from >her neck to her shoulders and says she feels like her head wants to >explode. Sandy, my friend, has had an MRI done which confirms many >things. She has a doctor's appointment in two weeks but if someone >cancels they will call her. She needs surgery. > >I started to do some research and found some information on laser >spinal surgery. I am wondering if anyone here has gone through this >type surgery. I found information on it at the following web >address: >http://laserspineinstitute.com/home.aspx > >It sounds like a good alternative, if she is a candidate. Anyone >here have first hand info on this type surgery or this doctor ( Dr. > St. Louis)? > >Thank you for any information. >Arlene > > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Arlene, Where in Pennsylvania is your friend? I live in Reading and recently saw an orthopedic dr. here.. Pamala >From: " tylehalo " <tyle@...> >Reply-neck pain >neck pain >Subject: Re: New to Group >Date: Thu, 08 Jun 2006 23:14:12 -0000 > >Hi Sharon, > >Thank you for your response. My friend, Sandy, is not connected to >the internet so I am trying to find out what options she has besides >the traditional surgery. The Laser surgery I thought would be >something she could look into while waiting to see her orthopedist >in two weeks... or sooner if there is a cancelation. But maybe not. > >I know how valuable the internet is since I did a lot of research on >the internet before I had my bilateral hip resurfacing done in South >Carolina. I live in New York. I joined a group >(SurfaceHippies) and learned a lot about the options I had. So I >really appreciate there is a group for back and neck pain. > >Sandy lives in Pennslyvanina. If anyone here can give me some help >on orthopedic mds in PA who you would recommend I would be most >grateful. As I learned from my previous research, knowing a lot of >information about the doctor and how experienced he/she is in doing >a specific type surgery is crucial. > >Thank you for any information you can give me. And thank you again, >Sharon, for your caring and informative response. > >Arlene > > > > > > Hi Arlene welcome to the group. Sorry to hear about your friends > > pain. You are a good friend to try and help her out. I kind of > > doubt she'd be a good canidate for laser surgery. They can remove > > the bulges BUT they may come back. I had some of the same symtoms > > she has with pain in my shoulders, upper back and neck And feeling > > like my head was too heavy for my neck to hold up. I ended up > > having a fusion from C5 - C6 over 3 yrs ago. The dr also did some > > work to clean up spinal > > stenosis which was the cause of some of my pain. It was no fun to > > feel like that and I am sure your friend is in a lot of pain. I >pray > > she finds someone to help her soon. There are several people here > > who suffer from stenosis so she is not alone. You can check in the > > links section of the group and you will find several places to >look > > for info that may help her. Again welcome to the group I will keep > > your friend in my prayers. Sharon Group Owner > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 At 12:13 PM 6/13/06, you wrote: >Arlene, > >Where in Pennsylvania is your friend? I live in Reading and recently saw an >orthopedic dr. here.. > >Pamala Hi, Pamala, my Name is Dave I moved from Lancaster, pa to Reading last July. I'm trying to set up an appointment with a pain management doctor here, perhaps you can recommend or warn me who not to see. Thanks, Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Hi Pamala, Sandy lives in town PA. She is going to see a Dr. McConnolly next Friday. This Friday she is scheduled to take a test that will try to determine what nerves are affected and or damaged. She is in severe pain. She is wearing a neck brace to try and relieve some of the discomfort but now her neck has swelled and she was told to put cold compresses on the swelling and alternate it with heat. I feel so sorry for her. She cannot sit or stand without pain. She is in bed practically the entire day. Is anyone on this board familiar with Dr. McConnolly? Hopefully he will be able to help her. She sees him next Friday. Thank you for your response Pamala. Arlene > > Arlene, > > Where in Pennsylvania is your friend? I live in Reading and recently saw an > orthopedic dr. here.. > > Pamala > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Hello , A pleasure to meet you, although so sorry that it has to be under these circumstances. You are right about everyone trying so hard to figure out how we contracted the virus. I did the same thing 4 years ago, at first but it didn't take me too long it figure it out as I put the pieces of the puzzle together. However, I wanted to tell you what someone online told me when I first found out. In fact my Doctor at Mayo told me the same thing. The reality and fact is that " yes " we have this virus, and that is something we have to face, accept and then deal with as we choose. However, all we are doing by dwelling on how we contracted it, is wasting precious time and energy that could be used for so many more productive things, such as treatment, healing physically and spritually. It didn't take me long to take these words of wisdom and run with them. Although in your case, it was very kind and compassionate thing for you to do by contacting the man that you thought might have given it to you. But Sweetie it really doesn't matter, and at first you might even be angry and want to point the finger or place blame, but when you finally are able to let go of the " wondering " - you will feel so much better and this frees you to focus on just you and your treatment. Just to let you know, I did the treatment in 2002, right after I found out that I had the hep, however, I was only able to stay on the TX for 16 weeks due to moving and loss of insurance, so low and behold, after being clear for 2 years - it has returned. Which the Doctors say this is unusual, so I will be starting TX again in the next few weeks. You have come to the right place, for friends, encouragement, support, and lots of luv and prayers. I could have never gotten through the first round of treatment without my online friends. They were all I had, and allot of them went above and beyond the call of duty to see me through. So keep in touch, and if you would like, I also know of some more amazing groups that helped me too. Take care of you and know that we are all here and I will be praying for you. May God Bless and keep you and yours. Love, hugs, prayers, and pearce Marie -- new to group Good morning all, My name is . I am 51 years old and I was diagnosed last month w/hep c. My geno type is one which I understand is only 40-50 responsive to treatment. Just had a liver biopsy this past Wednesday, and the most difficult part for me was the local injections at the site that they give to you ... triple ouch. Unfortunately, I wasn't available for my doctor's phone call yesterday, so will have to wait until after the holiday. Early in April, I started to feel lousy as if I was fighting a flu bug, with on and off fevers, night sweats, no energy whatsoever, and pains in my upper stomach. Went to the doctor thinking maybe I had some gall bladder problems, and he sent me for an ultrasound and an array of blood tests. No gall bladder problem, but my spleen was swollen and my liver enzymes were high. I have been driving myself crazy, probably like everyone else, trying to figure out where I got this virus. I had concluded that I must have gotten it back in the 70s when I dabbled in drugs ... snorting cocaine. In the back of my mind, however, I thought that I must have gotten it from my on again, off again male friend of five years because he was a former addict, and was never monogamous with me when we were together. When I told him I was diagnosed with Hep C and suggested that he get tested, he pretty much blew me off telling me that he's been tested before and doesn't have it. Then he pretty much blew me off. Only to find out recently that he followed my advice, got tested, and guess what? He tested positive. I had read that only 1 percent of the diagnosis contract the disease through sexual contact -- wouldn't you know that that would be me!! I've got a great sense of humor which I think is going to get me through whatever happens. I adopted my very first dog from a rescue organization a few weeks ago, a five year old Chihuahua, so I had a little being to care for and think about rather than dwell on just me. She is an absolute love ... but has had her problems too. Last week the vet found a tumor on her chest and she had to have a doggy mastectomy yesterday, and hopefully it won't be cancerous. Reading your postings, knowing that there are others going through the same things, physically and emotionally, helps a lot. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Dear , I hope anytime you need a hug or someone to listen to you will contact me on this site. After joining this site I learn a lot of information and how great the group is. I am being to believe we all better start being a little more active, not only in our treatment but with Federal Agencies. Just look at the CDC HepC site. I feel insulted. Most of us are suppose to be drug addicts and after all the email I have read that is not the case and non a non b hepatitis has been around a long time, that's what it used to be called. And why isn't help available to us.This country sends billions of dollars to other countries to fight diseases and yet HepC victims are on their own. Davies <lisamariedavies@...> wrote: Hello , A pleasure to meet you, although so sorry that it has to be under these circumstances. You are right about everyone trying so hard to figure out how we contracted the virus. I did the same thing 4 years ago, at first but it didn't take me too long it figure it out as I put the pieces of the puzzle together. However, I wanted to tell you what someone online told me when I first found out. In fact my Doctor at Mayo told me the same thing. The reality and fact is that " yes " we have this virus, and that is something we have to face, accept and then deal with as we choose. However, all we are doing by dwelling on how we contracted it, is wasting precious time and energy that could be used for so many more productive things, such as treatment, healing physically and spritually. It didn't take me long to take these words of wisdom and run with them. Although in your case, it was very kind and compassionate thing for you to do by contacting the man that you thought might have given it to you. But Sweetie it really doesn't matter, and at first you might even be angry and want to point the finger or place blame, but when you finally are able to let go of the " wondering " - you will feel so much better and this frees you to focus on just you and your treatment. Just to let you know, I did the treatment in 2002, right after I found out that I had the hep, however, I was only able to stay on the TX for 16 weeks due to moving and loss of insurance, so low and behold, after being clear for 2 years - it has returned. Which the Doctors say this is unusual, so I will be starting TX again in the next few weeks. You have come to the right place, for friends, encouragement, support, and lots of luv and prayers. I could have never gotten through the first round of treatment without my online friends. They were all I had, and allot of them went above and beyond the call of duty to see me through. So keep in touch, and if you would like, I also know of some more amazing groups that helped me too. Take care of you and know that we are all here and I will be praying for you. May God Bless and keep you and yours. Love, hugs, prayers, and pearce Marie -- new to group Good morning all, My name is . I am 51 years old and I was diagnosed last month w/hep c. My geno type is one which I understand is only 40-50 responsive to treatment. Just had a liver biopsy this past Wednesday, and the most difficult part for me was the local injections at the site that they give to you ... triple ouch. Unfortunately, I wasn't available for my doctor's phone call yesterday, so will have to wait until after the holiday. Early in April, I started to feel lousy as if I was fighting a flu bug, with on and off fevers, night sweats, no energy whatsoever, and pains in my upper stomach. Went to the doctor thinking maybe I had some gall bladder problems, and he sent me for an ultrasound and an array of blood tests. No gall bladder problem, but my spleen was swollen and my liver enzymes were high. I have been driving myself crazy, probably like everyone else, trying to figure out where I got this virus. I had concluded that I must have gotten it back in the 70s when I dabbled in drugs ... snorting cocaine. In the back of my mind, however, I thought that I must have gotten it from my on again, off again male friend of five years because he was a former addict, and was never monogamous with me when we were together. When I told him I was diagnosed with Hep C and suggested that he get tested, he pretty much blew me off telling me that he's been tested before and doesn't have it. Then he pretty much blew me off. Only to find out recently that he followed my advice, got tested, and guess what? He tested positive. I had read that only 1 percent of the diagnosis contract the disease through sexual contact -- wouldn't you know that that would be me!! I've got a great sense of humor which I think is going to get me through whatever happens. I adopted my very first dog from a rescue organization a few weeks ago, a five year old Chihuahua, so I had a little being to care for and think about rather than dwell on just me. She is an absolute love ... but has had her problems too. Last week the vet found a tumor on her chest and she had to have a doggy mastectomy yesterday, and hopefully it won't be cancerous. Reading your postings, knowing that there are others going through the same things, physically and emotionally, helps a lot. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hey everyone if i did " nt have this site to fall back on i would go crazy. I would just like to say thank you to everyone. RHONDA Hello , > A pleasure to meet you, although so sorry that it has to be under > these circumstances. You are right about everyone trying so hard to figure > out how we contracted the virus. I did the same thing 4 years ago, at first > but it didn't take me too long it figure it out as I put the pieces of the > puzzle together. However, I wanted to tell you what someone online told me > when I first found out. In fact my Doctor at Mayo told me the same thing. > The reality and fact is that " yes " we have this virus, and that is something > we have to face, accept and then deal with as we choose. However, all we > are doing by dwelling on how we contracted it, is wasting precious time and > energy that could be used for so many more productive things, such as > treatment, healing physically and spritually. It didn't take me long to > take these words of wisdom and run with them. Although in your case, it was > very kind and compassionate thing for you to do by contacting the man that > you thought might have given it to you. But Sweetie it really doesn't > matter, and at first you might even be angry and want to point the finger or > place blame, but when you finally are able to let go of the " wondering " - > you will feel so much better and this frees you to focus on just you and > your treatment. > Just to let you know, I did the treatment in 2002, right after I found out > that I had the hep, however, I was only able to stay on the TX for 16 weeks > due to moving and loss of insurance, so low and behold, after being clear > for 2 years - it has returned. Which the Doctors say this is unusual, so I > will be starting TX again in the next few weeks. > > You have come to the right place, for friends, encouragement, support, and > lots of luv and prayers. I could have never gotten through the first round > of treatment without my online friends. They were all I had, and allot of > them went above and beyond the call of duty to see me through. > So keep in touch, and if you would like, I also know of some more amazing > groups that helped me too. > Take care of you and know that we are all here and I will be praying for > you. > May God Bless and keep you and yours. > > Love, hugs, prayers, and pearce > Marie > > -- new to group > > Good morning all, > > My name is . I am 51 years old and I was diagnosed last month > w/hep c. My geno type is one which I understand is only 40-50 > responsive to treatment. Just had a liver biopsy this past > Wednesday, and the most difficult part for me was the local > injections at the site that they give to you ... triple ouch. > Unfortunately, I wasn't available for my doctor's phone call > yesterday, so will have to wait until after the holiday. > > Early in April, I started to feel lousy as if I was fighting a flu > bug, with on and off fevers, night sweats, no energy whatsoever, and > pains in my upper stomach. Went to the doctor thinking maybe I had > some gall bladder problems, and he sent me for an ultrasound and an > array of blood tests. No gall bladder problem, but my spleen was > swollen and my liver enzymes were high. > > I have been driving myself crazy, probably like everyone else, > trying to figure out where I got this virus. I had concluded that I > must have gotten it back in the 70s when I dabbled in drugs ... > snorting cocaine. In the back of my mind, however, I thought that I > must have gotten it from my on again, off again male friend of five > years because he was a former addict, and was never monogamous with > me when we were together. When I told him I was diagnosed with Hep > C and suggested that he get tested, he pretty much blew me off > telling me that he's been tested before and doesn't have it. Then > he pretty much blew me off. Only to find out recently that he > followed my advice, got tested, and guess what? He tested > positive. I had read that only 1 percent of the diagnosis contract > the disease through sexual contact -- wouldn't you know that that > would be me!! > > I've got a great sense of humor which I think is going to get me > through whatever happens. I adopted my very first dog from a rescue > organization a few weeks ago, a five year old Chihuahua, so I had a > little being to care for and think about rather than dwell on just > me. She is an absolute love ... but has had her problems too. Last > week the vet found a tumor on her chest and she had to have a doggy > mastectomy yesterday, and hopefully it won't be cancerous. > > Reading your postings, knowing that there are others going through > the same things, physically and emotionally, helps a lot. Take care. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Thank you, I will lean on you when I need a hug or someone to talk to as I have no one where I am at now. My oldest daughter is married but going through a divorce with two small children and my other daughter is away at college at UT in Dallas, and my youngest starts college in the fall. They will not be of much help, and I wouldn't burden them anyway. In fact, the last time I did the chemotherapy, I didn't let them see me the entire time I was on it. So I depend allot on these forums, I truly wouldn't survive the treatment without my friends here. Also, you are right about our government and the stigma that goes along with Hep-C. It has always been this way. And yes we must be our own advocates, as we get so little support from our own government. However, I feel that we with hep, must do our jobs to inform people. Their are websites that you can go to to get free postcards. I will try and find them for you ... Sorry but got get the phone, will write more later. May God Bless you all and yours Love, hugs, prayers. And peace Marie -- new to group > > Good morning all, > > My name is . I am 51 years old and I was diagnosed last month > w/hep c. My geno type is one which I understand is only 40-50 > responsive to treatment. Just had a liver biopsy this past > Wednesday, and the most difficult part for me was the local > injections at the site that they give to you ... triple ouch. > Unfortunately, I wasn't available for my doctor's phone call > yesterday, so will have to wait until after the holiday. > > Early in April, I started to feel lousy as if I was fighting a flu > bug, with on and off fevers, night sweats, no energy whatsoever, and > pains in my upper stomach. Went to the doctor thinking maybe I had > some gall bladder problems, and he sent me for an ultrasound and an > array of blood tests. No gall bladder problem, but my spleen was > swollen and my liver enzymes were high. > > I have been driving myself crazy, probably like everyone else, > trying to figure out where I got this virus. I had concluded that I > must have gotten it back in the 70s when I dabbled in drugs ... > snorting cocaine. In the back of my mind, however, I thought that I > must have gotten it from my on again, off again male friend of five > years because he was a former addict, and was never monogamous with > me when we were together. When I told him I was diagnosed with Hep > C and suggested that he get tested, he pretty much blew me off > telling me that he's been tested before and doesn't have it. Then > he pretty much blew me off. Only to find out recently that he > followed my advice, got tested, and guess what? He tested > positive. I had read that only 1 percent of the diagnosis contract > the disease through sexual contact -- wouldn't you know that that > would be me!! > > I've got a great sense of humor which I think is going to get me > through whatever happens. I adopted my very first dog from a rescue > organization a few weeks ago, a five year old Chihuahua, so I had a > little being to care for and think about rather than dwell on just > me. She is an absolute love ... but has had her problems too. Last > week the vet found a tumor on her chest and she had to have a doggy > mastectomy yesterday, and hopefully it won't be cancerous. > > Reading your postings, knowing that there are others going through > the same things, physically and emotionally, helps a lot. Take care. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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