Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hi, I am torn as to what to do so if anyone has been in this situation please help with some advice. I finally got the pain specialist today and they scheduled me for an appointment tomorrow saying that I might need another injection before I feel any relief. I told them since the injection I am worse, my arms are shooting pain more, my jaw is even going numb at times, headaches that are killers and now the low back with pain shooting down the legs. Chiropractor says go talk but don't do it unless I am comfortable with another. He does not understand why it is so bad as it is. He did also say for me to see a neurologist to schedule a nerve conduction test of the lumbar region. He says that is the only way we will know if it is coming form the neck for sure. So trying to get that scheduled. Anyway Orthopedic finally called and advises me to cancel the pain specialist for tomorrow until I meet with the neurosurgeon. This DR is at their office but off until Thursday. The orth says there is no more they can do for me with the pain for this is not their field. Which I do understand they do knees, hips, etc., but they are good doctors and I wouldn't trade them for anything? I don't know what to do. I trust them and believe I should cancel but what if I don't get in to see the other doctor for a week or so. I have no pain meds at all right now! I sleep for maybe 3 hours a night now. Then this DR is going to insist I have the surgery where he removes the discs etc. I am scared right now. Part of me wants to go to ER for pain help and another part of me is trying to handle it. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2011 Report Share Posted February 3, 2011 Tonni,I too was type 1a. I went thru 48 weeks of hell, I mean treatment, in 2005-2006. I did achieve SVR and I am cured. There are a few things that jump out at me after reading all of your posts... bear with me I hope by the time I'm done here you might have some different things to think about. Death is NOT a surety from hep c. As a matter of face, more people die with this virus than from it. Hep c is a very slow moving virus. The cardiac issues that you spoke about that caused the doctor to stop treatment sound a lot like anemia and the side effects from it. Many doctors out there freak out when you get anemic from treatment and have a tendency to pull the plug too quickly. Anemia will cause heart palpitations and skipped heart beats. I am speaking from a place of experience on this one. I wound up severely anemic 3 times during tx. I had transfusions for the first two times and wound up on Pro-Crit for months and needed yet another transfusion at the end. I know what severe anemia can feel like. My doctor was aware of this complication and attacked it head on instead of pulling tx because of it. The new meds that are coming out later this year. They are a 3rd medication to go along with the Interferon and Ribavirin. I have heard that the side effects of the new drug are more of the same.. meaning pretty much the same as the Interferon and Ribavirin. I had every single side effect that they knew of when I went thru treatment and 3 more that they didn't know of.. they added those to the package inserts! It's true that some people, not many but some, go thru treatment without any side effects. I wasn't that lucky. My doctor did say that the more pronounced the side effects were the happier he was. He considered side effects as proof that the drugs were working. You should be able to get SSD. It doesn't hurt to apply. They will deny you the first two times, it's kinda automatic... don't get discouraged. You should also be able to get help with your son as well. Maybe someone to come in a couple of times a week and give you a break. Just some thoughts...Hugs,TeriOn Thu, Feb 3, 2011 at 10:31 AM, Tonni Brende <tbrende7@...> wrote: i am a 1a but i feel i had to try treatment, even with all the scarey possibilities...but the fact that death is one day a surity from this disease, I felt trying to beat it was my only option. I know some people that have absolutely no side effects from tretments, I know some that have no affter affects, I know some that have beat it and some that didn't...I had to quit due to heart issues that arrose, but I am also considering trying again with the new treatment.... now this is just my thoughts, only you can decide what is best for your family Blessigns to you all Tonni Brende Wife, Mother, Grandma too... " Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. " athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php From: dianedellicarpini <dellcar9@...>Subject: [ ] decisions Date: Thursday, February 3, 2011, 10:11 AM We are going back to the doctors office today. He had recomended treatment for my husband. I am extremely concerned about the treatment, especially with all the new meds in the pipe line. On the scale of 0 to 4 his damage is a 2. The doctor said he had ten to fifteen years to live with out treatment. I am very confused and very concerned about long term side affects. Thinking today that we will ask if he can be monitored because he is geno type 1b. Any one else in this situation? Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 DianeAt least your husband's Dr. gave him more time, than mine did. When I started this fight, I only got 5 years from my specialist. Now, that was in 2004 and I'm obviously still here. Also, I'm a genotype 1b as well. However, my damage was already a 3 bordering on 4, before I even knew that I had the dragon.As far as I'm concerned, the alternative to treatment did not present a pretty picture to me. After my 1st round of tx in 2004/2005 I ended with being a non-responder. So, literally I felt like I had a pretty gray cloud above my head and was getting darker and darker as the next 3 1/2 yrs went by, waiting for the new tx. However, I was extremely blessed with being asked to participate in a clinical trial with the new med, beginning in early 2009. Today, I am Hep C free!!!!Unfortunately, Diane, the only real way that the Drs can monitor the damage that's being done to the liver, is with a biopsy. I don't know anyone that would wish to have one, say every year.Now, I'm not trying to tell you that medical treatment is the only way to go, either! There are lots of folks that are fighting the battle with natural supplements and a change in diet. Personally, I did try that route for the first two years after being diagnosed and then when I had the liver biopsy in 2004, I didn't feel that I had any time left to do it without tx. Also, I am pretty lousy with changing my diet etc.As for long term side affects?? The only long term side that I have, is a good case of Fibromyalgia. In all likelihood, that was going to happen anyway and tx just pushed it up a few years. Actually, just before I started on tx or even knew that I would be, my Mom and I took a trip down to central California. One day, it was really embarrassing when Mom's friend was taking us to a waterfall nearby and I couldn't make it all the way up. Those two older ladies had no problem!!I would highly suggest that you and your husband take some time to learn everything you can about this virus, before you make any decisions. Being a 2 out of 4, gives you that time. On this forum, Don has a very extensive library built up and I would sure recommend that you go there and link up to the information.Other than that, we are all here to be supportive to one another and therefore, if you have questions, we are more than happy to do our best to answer.Gloria We are going back to the doctors office today. He had recomended treatment for my husband. I am extremely concerned about the treatment, especially with all the new meds in the pipe line. On the scale of 0 to 4 his damage is a 2. The doctor said he had ten to fifteen years to live with out treatment. I am very confused and very concerned about long term side affects. Thinking today that we will ask if he can be monitored because he is geno type 1b. Any one else in this situation? Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Just another " my two cents " comment. With me, the fibro started about 9 months BEFORE treatment. That is one issue that I wonder if I had tx earlier , would I have Fibro ?? And the Reynauds Syndrome started about two years earlier. Woud i have been able to not have the R S if I had treated earlier ??And that was why no dr would treat me. My pain level was so high already, they said I wouldn't be able to tolerate tx. Did find one that thought I should tx if I wanted to. Four specialist and my internist later, I did have to stop tx . But it was more of a mental / emotional issue. With all the bad sides I had, who woudnt be down?? But at least I was undetectable when I stopped tx. I just wanted to add my experience of putting off tx. Please make an informed decision.http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Feb 3, 2011, at 10:35 PM, Gloria <gadamscan@...> wrote: DianeAt least your husband's Dr. gave him more time, than mine did. When I started this fight, I only got 5 years from my specialist. Now, that was in 2004 and I'm obviously still here. Also, I'm a genotype 1b as well. However, my damage was already a 3 bordering on 4, before I even knew that I had the dragon.As far as I'm concerned, the alternative to treatment did not present a pretty picture to me. After my 1st round of tx in 2004/2005 I ended with being a non-responder. So, literally I felt like I had a pretty gray cloud above my head and was getting darker and darker as the next 3 1/2 yrs went by, waiting for the new tx. However, I was extremely blessed with being asked to participate in a clinical trial with the new med, beginning in early 2009. Today, I am Hep C free!!!!Unfortunately, Diane, the only real way that the Drs can monitor the damage that's being done to the liver, is with a biopsy. I don't know anyone that would wish to have one, say every year.Now, I'm not trying to tell you that medical treatment is the only way to go, either! There are lots of folks that are fighting the battle with natural supplements and a change in diet. Personally, I did try that route for the first two years after being diagnosed and then when I had the liver biopsy in 2004, I didn't feel that I had any time left to do it without tx. Also, I am pretty lousy with changing my diet etc.As for long term side affects?? The only long term side that I have, is a good case of Fibromyalgia. In all likelihood, that was going to happen anyway and tx just pushed it up a few years. Actually, just before I started on tx or even knew that I would be, my Mom and I took a trip down to central California. One day, it was really embarrassing when Mom's friend was taking us to a waterfall nearby and I couldn't make it all the way up. Those two older ladies had no problem!!I would highly suggest that you and your husband take some time to learn everything you can about this virus, before you make any decisions. Being a 2 out of 4, gives you that time. On this forum, Don has a very extensive library built up and I would sure recommend that you go there and link up to the information.Other than that, we are all here to be supportive to one another and therefore, if you have questions, we are more than happy to do our best to answer.Gloria We are going back to the doctors office today. He had recomended treatment for my husband. I am extremely concerned about the treatment, especially with all the new meds in the pipe line. On the scale of 0 to 4 his damage is a 2. The doctor said he had ten to fifteen years to live with out treatment. I am very confused and very concerned about long term side affects. Thinking today that we will ask if he can be monitored because he is geno type 1b. Any one else in this situation? Diane Quote Link to comment Share on other sites More sharing options...
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