Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 The problems you're describing can certainly be back related even if they are not flatback related. I've had dreadful spasming under the arches of my feet, so that they were just in solid knots, as a result of nerve root irritation related to narrowing of the spinal canal and of the lateral recesses (where the nerve roots actually exit), in addition to the heavy shins, dragging legs etc. London wise, I'd ask your GP to refer you to the Royal National Orthopaedic Hospital at Stanmore, which is at the far northern end of the Jubilee line, although they do hold some outpatients clinics at Bolsover Street, which is very near to Great Portland Street tube station. They've got several specialists including Jan Lehovsky, Ben , Stuart Tucker and ... don't know... on. Mr Tucker and Mr on are both particularly well known on my forum (which is http://www.scoliosis-support.org - it's open to any and all, but definitely has a UK/Irish bias to the membership. It's more generalised than here, which is part of the reason I'm very happy to be here as well as running SSo, as there aren't so many of us in the long term problems boat at SSo, but still it's a good friendly bunch - oh, and the date and venue for the big meet has been set, 30th August at a park in Birmingham) as they have both dealt with some pretty complex adult cases. All the specialists at RNOH deal with adults though, and I've no doubt that if whoever you see felt that a different doctor had a better skillset for dealing with your particular problems, you'd be transferred. I work in London, Tuesdays and Fridays currently, so if you feel like meeting at some point, let me know ) titch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Thanks Titch, that's so nice of you. I've just looked at your UK forum, it looks really cool. Did all the old messages disappear with the new website? I could only see quite recent ones but I'm really crap with computers and not very familiar with how forums work and where to look. Your advice is very helpful, sounds like you've been through quite a lot. How are things for you now? I'll go back to my GP this week and let you know what happens. Thanks so much for offering to meet, that would be really good. Let me know what day is better and where, I work from home at the moment so quite flexible time wise, and live near Old Street. Can't do next Thursday but otherwise no plans. Take care Cyrine x > > The problems you're describing can certainly be back related even if > they are not flatback related. I've had dreadful spasming under the > arches of my feet, so that they were just in solid knots, as a result > of nerve root irritation related to narrowing of the spinal canal and > of the lateral recesses (where the nerve roots actually exit), in > addition to the heavy shins, dragging legs etc. > > London wise, I'd ask your GP to refer you to the Royal National > Orthopaedic Hospital at Stanmore, which is at the far northern end of > the Jubilee line, although they do hold some outpatients clinics at > Bolsover Street, which is very near to Great Portland Street tube station. > > They've got several specialists including Jan Lehovsky, Ben , > Stuart Tucker and ... don't know... on. Mr Tucker and Mr > on are both particularly well known on my forum (which is > http://www.scoliosis-support.org - it's open to any and all, but > definitely has a UK/Irish bias to the membership. It's more > generalised than here, which is part of the reason I'm very happy to > be here as well as running SSo, as there aren't so many of us in the > long term problems boat at SSo, but still it's a good friendly bunch - > oh, and the date and venue for the big meet has been set, 30th August > at a park in Birmingham) as they have both dealt with some pretty > complex adult cases. All the specialists at RNOH deal with adults > though, and I've no doubt that if whoever you see felt that a > different doctor had a better skillset for dealing with your > particular problems, you'd be transferred. > > I work in London, Tuesdays and Fridays currently, so if you feel like > meeting at some point, let me know ) > > titch > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 Sorry I'm so late on replying to this - hubby has done his back in, and there have been some other things I've been dealing with, so has taken me a few days to get back to here and far enough to reach this message. Regarding the forums, we did manage to retrieve all the old member and post data, so it is all in there, but most of the forums are set to only show the last 30 days of posts. If you scroll to the bottom of a forum, there should be a drop down box there which will allow you to change this, or if you do a search for anything specific, then you can set the time period you with to search over. What didn't transfer was people's passwords, so they need to be re-set, and all the old accounts transferred have the various options (such as a better editor for writing posts in, the ability to PM and be PMd by members, etc) turned off. All the old information is there though - I was very relieved we didn't lose our history! Anyway, hope all has gone well with your GP. I'm only in London on Tuesdays and Fridays, so to meet it would need to be one of those days. Feel free to email me direct at home on oojackapivvy _at_ gmail _dot_ com or at work on tchester _at_ amnesty _dot_ org ) titch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 War_wic and group; Welcome to our humble group,, Yes your right RA is a horrible disease... I too didnt have medical insurance at first.. It took me two years to get on disability and to be able to afford the meds and doctor.. The first rheumy I went to gave me morphine and something else.. It was pretty cheap so I took the morphine and pretty much stay drugged till I got on disability and was able to get a primary doctor and he sent me to a new rhuemy.. Yes War_wic there is other meds you can take... I don't know how the insurance handles it for sure... I think we have to try certain drugs first.. Just keep complaining and the doctor may have pity on you and try to help more.. When I first started this group I read some guy say.. " What the hell I got to do,, Come in the office in a wheel chair to show them how much pain I'm in. " I didnt do that but went in limping and saying my pain level is 10 and I wasnt lieing either I said it was a level 5 before.. I had no idea what a level meant litterally .. Actually it was a level 100 lol... I agree War_wic the pain is so hard to deal with.. I finally was approved for humirra and I had no pain for 6 weeks.. I think I have what they call a flare this morning... Good luck buddy I hope you find what you need.. What is your name if I may ask.. You did not write it at the end of your letter??? gentle hugs Clora > > Hello everyone! Let me just dive in- > I just turned 27, and have recently been diagnosed with RA. It's been > absolutely horrible. I don't know how people are able to deal with > the pain on a daily basis. I guess I'm in the early stages of > treatment, the stage that doesn't work, or takes a while to work I > guess. My doctor basically put me on some med's and said let's try to > put it into remission, it's only been a few weeks on the med's but > there's been no change in how swollen I am, or how much pain I'm in, > or the feelings of just wanting to off-myself because I don't think I > can deal with it another day. I don't have insurance, so I don't > have a rhuemy yet, I'm trying for medicaid and possibly disability. I > feel really alone and in the dark about the whole thing, and in so > much pain I can't really focus on anything but the fact I'll be > dealing with this for the rest of my life. If anyone could tell me > about the beginning of their treatment, how things are day to day, if > the pain ever really stops, if things are ever " normal " again for > them... Pretty much any information would be great. > Thank you all, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Occ and gorup; Hi welcome to our humble group. I am so sorry to hear you have this dreadful disease with your feet and toes. I am sorry for your pain. I hope that we can help you cope with your illness and I hope you enjoy our group as much as I do. take care and god bless gentle hugs Clora ********************************************************* > Hi, This is my first post. I saw your message here and it struck > home. I have spondyloarthopathy, very similar to RA which runs in my > family, but my arthritis attacks my feet. I suspect my pain is > partly from the mess of bones which have migrated, as well as the > inflammation. I dinked around with a podiatrist, etc. until finally 3 > years later got a sero-negative RA diagnosis, which was changed to > spondyloarthropathy after genetic testing. Cold water is really bad-- > I've been trying to swim but find it takes a much warmer pool to not > aggravate symptoms. In addition to swimming, I've done 4 months on > methotrexate, longer on plaquenil, prednisone, and now added a 3rd > drug rather than going to methotrexate shots. fatigue, depresson, > ostoporosis,and difficulty walking--that's my definition of arthritis. > > > > > > > Sorry this is sooooo long! > > > > Does anyone else suffer sharp acute pains in the feet - sometimes > > which are accompanied by numbness - sometimes there's just numbness > > and no pain, just a little bearable tingling. The pain only lasts > > from mins to an hour or so at the very most each time. They can > > occur whether i'm lying around or walking around - when I read > about > > peripheral neuropathy it definately sounds similar and the only > thing > > that gives me some amount of relief is codeine. But aside from some > > heart valve damage I have, which surely couldn't cause it to this > > degree, there seems no obvious cause that I could think of. I've > got > > errosions in my feet - but that's bone right, surely it wouldn't > > affect circulation to that degree if my RA isn't that active in the > > area at the time? > > > > I also notice if I swim or am out on cold water the bottoms of my > > feet will go numb, the pain is unbearable (like i'm walking on > glass > > to get to the hot shower) and they turn white (translucent like) > until > > I can get the blood flowing in them properly again. > > > > The pain can be just in my one of toes or ball or heel of my whole > > foot. It feels different to the usual pains from my RA and none of > > the RA meds seem to work. > > > > I'm at the point where my RA is under control and i'm trying to > peel > > away the layers of what appear to be other problems - unassociated > > but which have previously been lumped into the whole RA thing cause > > it's easier for Doctors to do - and you know how it is you give up > > and agree. I just found out i've put up with 3 impacted wisdom > teeth > > for 18 months thinking it was RA in my jaw!! arrrh - now waiting 12 > > months to get them out! lol So i'd really love to get to the > bottom > > of this or at least know the best way to treat it - these pains are > > agony - the take your breath away kind! Give me a broken bone any > > day!! > > > > Any ideas or hearing from someone else with this would be greatly > > appreciated!! > > > > Thanks > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2008 Report Share Posted December 23, 2008 and group; Welcome to our humble group . I take plagunil and sulfazaline. It never helped my RA. When I started Humira injections it started helping the next day. People say it can take up to 6 months to feel its full affects. It helps me a lot. I am off of it a while till I finish my antibiotics. You can't take the injections while you have an infection is what I understand. I will be taking it in a few days. I really enjoy our group here, I hope you do as well. gentle hugs Clora **************************************************** > My name is . I am 36 years old and live in Indiana now, as we > just moved here from Ohio. I was diagnosed with RA at age 12 and now > have been on pred for over 15 years, as I am allergic to every NSAID > out there. I do take plaquenil with my pred tho, although Im not sure > it helps much. I wanted to hear some suggestions from everyone about > meds. I NEEEEDDDD to get off the steroids! I feel lousy with them, > BUT even worse without, so I dont know what to do. Im really flaring > lately, and would love to hear about other treatment options from other > that have been there, instead of just a DR. > > Thanks so much, God Bless, and Happy Holidays! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 Welcome to the group. We have had a similar run with our teen as many aspies have a very challenging road such as ours. One of the best things we did for our teen was to have teen in a mental health unit with his permission in residential treatment program that works with many challenged teens that are going through similar.. They work with treatment plans, goal setting and also provide in house school for kids that stay for a while. attached is a link of the facility we worked with so you will need to go to your state and look at their program. My son stayed for 4 months and came back so much less angry, doesn't dwell on things as much and we keep up the goal system to help him. If we didn't take this route he may have turned to something worse and couldn't have ended up as a teenage delinquent in a facility.. http://www.psysolutions.com/facilities/index.html hope this helps some of you > > Thank you for the welcome I think it was. My daughter was originally diagnosed with adhd/odd when she was 12. We've had a lot of problems with her starting off in preschool on. We took her in for another eval with another specialist per the request of her counselor at school and school psychologist. The diagnosis explains a lot of what is going on with her. She has been in trouble the last couple of weeks cutting classes at school twice and her non-attendance was not noticed. also some other issues in tandem with the cutting classes which I will not disclose being of a very personal nature. We've been down a very long road with her and it's probably going to be even longer still. She is in counseling right now with a doctor wh specializes in Aspberger's. I'm hoping with our love and support and also from the school we'll be able to help her have a relatively normal life. S he's a very bright child and despite all her issues we love her a lot. Sincerely Aigheannach. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2010 Report Share Posted June 13, 2010 LoisA very huge welcome!! I'm glad too, that you came to join us and partake in some frivolity as well as the serious crap we have to deal with.I understand the post treatment blues. When I came back an NR in 2005, it took awhile to get my feet back on the ground. Then, the not knowing what's next just about drove me around the bend, because of course, there was no option to repeat the same treatment that had failed and there was no news back then about this new course of treatment.In early 2009, I was offered and accepted a Clinical Trial with the Protease Inhibitor. By that time, I had already slipped over to early stage cirrhosis. But, after another 11 months of misery this time, I appear to be SVR so far. They'll give me the early signal somewhere after I go for my tests at the end of this month.Unfortunately as well, I had just finished that treatment when it was confirmed that I had liver cancer. Now, I've been in for a resection (completely cut out the tumours) and again, I find out at the end of the month, what the last CAT Scan says.But, I have some new dreams and a new life to embark on right now. First of all, most of the time, I'm just mighty grateful to wake up each day!! I'm out in my Travel Trailer, which is really my travelling office, sort of and trying to enjoy just being in the park. Now, if our fine west coast weather would co-operate a little more, it would be heaven.I feel like I am just beginning to come through the post-treatment, post-cancer or post-marriage blues. However, in even sharing with others, it reminds me of all that I have to be grateful for each day!! It helps me to remember that I am a fighter and will not go down quietly.Hope we all hear from you soon.Gloria Hi, Glad to be here! Dx in 2000. Just failed 2nd treatment. Not worried - just have to give another try when new drugs come available. Have had the post treatment blues, but getting my strength and spirits back! Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Welcome lois, Sorry the first two tx did not work. That is no fun. I am waiting on the new tx to start my first tx. I am Cinder by the way from Kansas. I am 51 and married. Found out I have HCV last Thanksgiving time. I probably got it from tats in the 80's or some medical procedure or dental. Who knows. But I got it. I work as a Medication aide in a Assisted living nursing home. We are glad to have you here in our group. This is a great group of people. We are more like a big family. We are here for everyone. No question is dumb. If you need to cry or cut up or just talk there is usually someone around online here. We have people from all over on here. Make your self at home. Hugs Cinder Check out datagrey's photos and profile! http://community.webshots.com/user/datagrey Find me on MySpace and be my friend. http://www.myspace.com/datagrey From: Lois Bradley <lab_0422@...>Subject: [ ] Welcome Date: Sunday, June 13, 2010, 8:48 PM Hi, Glad to be here! Dx in 2000. Just failed 2nd treatment. Not worried - just have to give another try when new drugs come available. Have had the post treatment blues, but getting my strength and spirits back! Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2010 Report Share Posted June 25, 2010 Terri,It seems like you and I have a few things in common, and not just our name. I am 52, was diagnosed with Hep C Type 1A in 2004. After the biopsy they determined I had this virus in my body for about 25 years. Counted back, 5 units of untested blood in 1980 when I had my son. I was in shock when I found out I had Hep C. It's strange but my biggest fear was how was I going to tell my husband and my son this. I had re-married just 3 years before my diagnosis and he didn't sign on for this... and my son, the virus came from blood I received due to loss of blood when having him and being severely anemic to start with. I didn't want him to feel like it was his fault. It took me years to tell him how I got the virus and actually he took it quite differently than I expected. The difference between you and me at this point is nobody rushed me into anything. It was about 10 months from diagnosis to the time I started tx. I had time to adjust and get ready for it. I had time to make a decision and not have a decision made for me. What I didn't know at the time was that if I didn't start tx I was about 6 months from being put on the list to wait for a new liver. I was told this about halfway thru tx. I went thru 48 weeks of Peg-Interfuron and Ribavirin and thought every day would be my last. Fever, chills, shaking, nausea, you name it I had it. I even lost my hair twice. I also needed 3 blood transfusions during that time but got away with just 2. Treatment was no picnic for me.About 3 months into treatment I noticed my brain was not acting right... I couldn't remember things... like names of people I'd known for years... or words. Our house became an endless game of charades. My husband got quite good at it actually. I was trying to find the word hurricane in my head and all I could come out with was water and I made a big swirling movement with my hand... Hubs popped out with "Hurricane?" Yep. that was the word. This went on and on and I was told it would go away after tx was over... nope, still have it. I also started getting these horrible pains. I called the doctor, got the nurse and told her that I was positive I had broken my leg during my sleep. And then I told her I was talking about the big bone and it was my right leg. She told me over the phone to stand up. I did. She then told me my leg was not broken and it was the treatment. Vicodin. Lots of them. What no one realized was that right about 3 months into treatment Fibromyalgia reared it's ugly head. And you're absolutely right, it sucks.I wound up clearing during tx and have been SVR for 5 years now. The Hep C is gone but the Fibro lingers on. Sounds like what you are describing is a hot flash. Those suck pretty much too. I wound up needing a hysterectomy 18 months after I finished treatment. What you are describing is what happened to me for two weeks straight 24/7. It would cycle with me... the hot flash would last 20 minutes followed by 10 minutes of freezing followed by 20 more minutes of heat... it was horrible. I was on hormone therapy for a year, then stopped that and the hot flashes came back for about a month then they went away. I still get an occasional one here and there but not enough to even count. Maybe 2 a month.I haven't been able to work since I started treatment. There are days I can't get out of bed. Then there are days that I feel almost halfway okay and I push myself to get stuff done.... Like now.. I'm in the process of moving... I actually have to move on Tuesday of next week. I will over do it one day or for two days and then I am a mess for a couple days after that. I doubt very seriously that I will ever be back to my old self again. Your doctor's saying that you are not coping well with your illness..... there's a reason for that. When you were diagnosed with Hep C everything went really fast... from diagnosis to the start of treatment. When someone is diagnosed with something as serious as Hep C, there are 5 stages that the person must go thru in order to cope. These are the same 5 stages that you go thru when you lose a loved one. It's called the 5 Stages of Grief. Stage 1: Denial and IsolationStage 2: AngerStage 3: BargainingStage 4: DepressionStage 5: AcceptanceIt seems like things went so fast for you right from the start that you never got thru these stages.... From your message it sounds like you are stuck in stage 2. There is no time limit on each stage but usually the whole process takes a few months. It sounds like you didn't get the chance to go thru these stages before you were thrown into treatment... and then the treatment didn't work. That would start the cycle all over again. Don't lose hope, there are new treatments for Hep C in the pipeline... I've heard they should be available as early as the end of this year. There are clinical tests going on right now all over the world. As for the Fibro.... I've heard Celexa is not the most liver friendly medication and it's extremely expensive. I tried the Gabapentin but it did nothing for me. My doctor just put me on Amitriptyline and so far its working.. slowly but surely. I also have Norco for the days that are unbearable. Since I started on the Amitriptyline I haven't needed the Norco much. I know, you got dealt a bad hand.. we all did. It sucks. Every person on here would probably give their right eye to be the way they were a day before they got infected. Here is the good part, you have found a soft place to land. A group where everyone cares and everyone is willing to help. Welcome to our little world here. I think you will find the experience comforting.Hugs,Teri in Chicago From: Terri Amacher <terramac@...> Sent: Fri, June 25, 2010 10:30:36 AMSubject: [ ] Welcome Hi Everyone, My name is terramac( for terri). I am 50 yrs old. I was going to say young, but lately thats not quite the truth. I have four great kids. Only one is still at home. She is just starting HighSchool this fall, so we'll see how that one goes...She really is great though. She has had to put up with a sick Mom, something the older ones didnt have to worry about during their school years. That is ONE of the things that makes me mad about this disease. I found out I have HVC is Aug. 2005. (I was infected during a surgury I had following a car wreck,the day before I turned 21.) I had been feeling absolutely drained for quite a while, but everyone said "your just getting older." I was thinking,NO, this is not normal, so went to Dr.and he did some blood work that showed that i had Hep C. What a Shock. I literally dropped my jaw. WHAT? He Scheduled biopsy right away and it came back 3/3. Then I started Peg/Rib treatment. It was like bing, bang, boom. They had me all lined out, and my head was still spinning from finding out what I had on Hep c. I went to the bookstore and started reading. That helped me alot. I needed to understand what was happening to me. I would recommend this to anyone who first finds out about having Hep C. they say "knowledge is power". I am genotype 1b. My first round of treatment didnt work. I didn't even cleared, so they took me off at 5 mo. and said see ya. I really felt lost then. I have this virus in me, growing and Im just supposed to pretend its not there? I had started having joint pain at that time that I didnt understand, but was becoming quite intense. They said that Hep C can cause this and Interferon can cause this, no way of knowing which one. Great! The joint pain was getting pretty bad, so they put me on vivoden to take as needed. I was tested for cryroglobulemia( sp), neg. My Doctor then recommend we maybe try daily infergen shots. I started this treatment and was on it for 10 months, but still did not respond. Daily infergen treatment is a very brutal treatment to go through. I was very, very ill during this time. I, myself, had to try, or I would always wonder if that might have kicked it. By this time my pain had progressed to where my doctor had started me on morphine for relief. I finished the infergen in june of 2008. I was also having terrible whole body sweating attacks that had been going on since before I was first diagnosed. these attacks happen 6-10 times a day and can last for an hour or more. My clothes are drenched. My skin is red, cold and clammy. My skin actually feels a shock sensation when the sweating starts. It is NOT like exercise sweating, at all. Hormone imbalance has been ruled out. I searched the web and talked to countless doctors and i can find nothing on this. I had started taking gabapenton for the joint pain and this actually helped relieve my sweating problem. I wonder why? I have been diagnosed with fybromialgia and neuropothy, from the Hep c or its treatment. My medications seem to be in a good balance now, to try to have some quality of life. I can no longer work, I can hardly walk some days. my hands and feet hurt, my joints hurt. THIS SUCKS!! I was a very active person before this Hep C caught up to me. My doctors say im not coping well with the acceptance of my illness. I hate my illness. I want my old self and life back. How do I cope with that?? Im joining this group, because Im hoping to find some way to get through this. I need to be able to talk or think about my illness, without crying. (and yes I take anti-depressants) Obviously I need help. So.... here I am. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2010 Report Share Posted June 26, 2010 Terri - WelcomeMy heart honestly goes out to you and you've come to the right place!!!First of all, I agree with you when you say about feeling absolutely drained at 45. That is not normal, so thank heavens you did go on and see a Dr. Probably the fact that it was 2005 was the only reason they even ran a HCV test because it is still not done as a routine and should be.I do not understand when you say your biopsy was 3/3?? There are 4 stages of liver damage and stage 4 is cirrhosis. I was already at stage 3 (full bridging fibrosis) before I took treatment in 2004. Then, I'd slipped into stage 4 before my 2nd treatment. It was 2005 when I failed my 1st treatment as well and that was after doing it for 48 weeks. Also, it sure did feel like the Dr. and the nurses just shrugged and walked away at that time. All I knew was that I felt like a ticking time bomb or like a black cloud was over my head. The worst was, I didn't feel like anybody understood either. However, it got my fingers moving and getting online to find any information that I could. I did join what I thought was an online support group; but, it was Canadian and as soon as the government settled all the bad blood claims - everybody left. Finally, I found my way to this group last year.In the latter part of 2008, I finally realized that I had been going through the 5 stages of grief, only it was grieving the loss of my once good health. Like you, I was unreasonable angry about this HepC. Although I wouldn't wish it on my worst enemy, I didn't understand "why me"? But, finally I to the acceptance stage!! I would remind myself of even people that I knew that suffered from something else; but, also suffered from life changing events!! Oh and I forgot, within a month of completing treatment in 2005, I knew and had it diagnosed, that I have a pretty good case of the Fibromyalgia.Anyway, in early 2009 I was asked to participate in a Clinical Trial of the medications that are due to be out for the public by either late this year or early next. Oh, it was no walk in the park, that 48 weeks of tx. I had entirely different sides from the 1st one and mostly to do with emotions. Took lots of anti-d's just to get through. However, I am now pretty secure with saying that I have cleared the virus!!!Are you sure that those body sweats are not the change of life??? Sure does sound like them and of course, any medication can send them right off balance.Terri, after putting up a pretty good fight with the HepC for about 5 years, I learned 2 weeks after the end of this 2nd tx, that I also had been given the gift of liver cancer!!! I honestly don't think my mind could quite process the whole thought of that. I have a belief in a spiritual Higher Power and had really had to hang onto that while completing my 2nd tx. With the cancer - I just totally left that up to HP and went along with the ride.Well, just last week, I had it confirmed from a CT Scan that had been done, that currently I am cancer free and all my other organs seem to be in fabulous shape. Oh, I did have a resection done in April and love showing off my 11 inch scar!!!After going through all of that - my marriage finally failed in the middle of this month after 21 yrs together. However, I am not grieving that nearly enough LOL I only say that because in the past, the breakup of a relationship was a great way for me to lose weight and this one is just not doing that. Could be that I only PITY my 68 yr old, now ex-husband for his lack of being able to stick with a sick wife and especially when she was on the verge of getting the good news. However, far too much damage had already been done to ever be able to mend it now. Actually, I'm very happy to be out here in the forest with my dog, my little mobile office (travel trailer) and absolute peace and serenity.Why I am saying all this right out of the gate, was to suggest that everyone of us that have come out of hiding and shout HELP - are the fighters. Obviously, you have the fighting spirit in you or you would not have found us and certainly would not have gone through with another 48 weeks of infergen. My friend in Vancouver has been trying to stay the course by using weekly interferon without the Ribivirin. However, I don't really think it's doing much now except making her extremely ill!!Funny, I went to look up what the infergen was and the first site that I hit, took me the the HepCBC site. They are just down at the bottom end of the island that I live on, off shore from Vancouver, Canada.Anyway, hang in there Terri - we are all here to hold your hand, cry with you, help you to scream out in rage at this disease and even talk one on one if you need. Just let any of know how we can be of help!!!Gloria Hi Everyone, My name is terramac( for terri). I am 50 yrs old. I was going to say young, but lately thats not quite the truth. I have four great kids. Only one is still at home. She is just starting HighSchool this fall, so we'll see how that one goes...She really is great though. She has had to put up with a sick Mom, something the older ones didnt have to worry about during their school years. That is ONE of the things that makes me mad about this disease. I found out I have HVC is Aug. 2005. (I was infected during a surgury I had following a car wreck,the day before I turned 21.) I had been feeling absolutely drained for quite a while, but everyone said "your just getting older." I was thinking,NO, this is not normal, so went to Dr.and he did some blood work that showed that i had Hep C. What a Shock. I literally dropped my jaw. WHAT? He Scheduled biopsy right away and it came back 3/3. Then I started Peg/Rib treatment. It was like bing, bang, boom. They had me all lined out, and my head was still spinning from finding out what I had on Hep c. I went to the bookstore and started reading. That helped me alot. I needed to understand what was happening to me. I would recommend this to anyone who first finds out about having Hep C. they say "knowledge is power". I am genotype 1b. My first round of treatment didnt work. I didn't even cleared, so they took me off at 5 mo. and said see ya. I really felt lost then. I have this virus in me, growing and Im just supposed to pretend its not there? I had started having joint pain at that time that I didnt understand, but was becoming quite intense. They said that Hep C can cause this and Interferon can cause this, no way of knowing which one. Great! The joint pain was getting pretty bad, so they put me on vivoden to take as needed. I was tested for cryroglobulemia( sp), neg. My Doctor then recommend we maybe try daily infergen shots. I started this treatment and was on it for 10 months, but still did not respond. Daily infergen treatment is a very brutal treatment to go through. I was very, very ill during this time. I, myself, had to try, or I would always wonder if that might have kicked it. By this time my pain had progressed to where my doctor had started me on morphine for relief. I finished the infergen in june of 2008. I was also having terrible whole body sweating attacks that had been going on since before I was first diagnosed. these attacks happen 6-10 times a day and can last for an hour or more. My clothes are drenched. My skin is red, cold and clammy. My skin actually feels a shock sensation when the sweating starts. It is NOT like exercise sweating, at all. Hormone imbalance has been ruled out. I searched the web and talked to countless doctors and i can find nothing on this. I had started taking gabapenton for the joint pain and this actually helped relieve my sweating problem. I wonder why? I have been diagnosed with fybromialgia and neuropothy, from the Hep c or its treatment. My medications seem to be in a good balance now, to try to have some quality of life. I can no longer work, I can hardly walk some days. my hands and feet hurt, my joints hurt. THIS SUCKS!! I was a very active person before this Hep C caught up to me. My doctors say im not coping well with the acceptance of my illness. I hate my illness. I want my old self and life back. How do I cope with that?? Im joining this group, because Im hoping to find some way to get through this. I need to be able to talk or think about my illness, without crying. (and yes I take anti-depressants) Obviously I need help. So.... here I am. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 Hi Welcome welcome to the group. We are all glad that you have joined us. I am don in ks, an old hippy with HCV, 1B, labs close to normal, DX'd in 2008. I have not tried HCV TX yet, but my day is comming. I try to help everyone with info. Your last question first. No we dont have a 'real time' chat room per say. We all just chat on forum when we feel to. Here is a list of Hepatitis chat rooms. Click this link. http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=hepatitis%20chat%20rooms & type= , as you probably know, our liver is one of the most important organs in our body. HCV throws it out of wack, and that causes the rest of our body to go nutz too. Your symptoms fit right in. Most of us discovered our HCV when we got sickly and ended up at the doctors office. Your fear of the HCV TX is also normal. Every one of us are afraid, but many of us decide to move forwards and get this demon out of our bodies if we can. In this group, no one judges anyone else for their decisions. We are all free to follow whatever path we choose. Some choose HCV TX, some alternative protocals, some nothing at all. Each to their own. We all teach and learn from each other here - sharing experiances, info, and support. We have a lot of love here, and we never argue or fight. Everyone has an opinion, and everybody else respects that. We are all free to talk about whatever we need to, because who knows what relates to our illness, and what doesnt. That said, we do try to stay on topic, but anything is possible. One thing we do know is that all info is valuable.....to someone. , Medical Science is just about to make a giant leap forwards with HCV TX. Sometime this winter or by next spring, the AMA is fixing to approve Telaprevir, a Protease Viral Inhibitor. [There are several more things in the pipeline too.] They are saying that for some of us, it may double our chances of clearing, and may even cut the HCV TX time in half. It will still involve the combo - Inf/Riba - but will attack the virus from a third direction. You may be interested in this. Anyways, welcome again and thank you for joining us. We all look forward to chatting with you, and getting to know you. Stay well my friend. love don in ks From: Kochuten <dreamondragonfly@...>Subject: [ ] Welcome Date: Saturday, August 21, 2010, 3:05 PM Thanks for the welcome! My name is and I'm in Washington State. I am not new to HCV. I am 1a chronic active, fairly symptomatic (flu-like symptoms)even though my blood work and biopsy's have come back good so far over many years time. I've seen a ton of doctors over the years, but the majority have tagged me as a non-canidate for tx. Mostly, due to the my age, fragility, anxiety/depression, length of infection (30 years) and post-menapausal state. I am okay with this dx for now, as I fear the long term side effects of Interferons/combo therapies. That's not to say that I don't support each individuals decission to choose their own healing path. I'm all for free choice. I've been down the SSI road and lost my case after a long 6 year battle. I may re-apply as advised by lawyers, but will need to regain strength before considering going back down that long road. I am just looking to connect/ learn/share with others who can relate and understand. Years back, I was a moderator for a then new online group called HCV Anonymous. It has been sometime since I have been active on any support site, but felt it may be time to try and get back in touch. I recently lost another friend to liver failure (2 in 1 year) due to HCV, and the toll has been rather harsh, as loss can be. Does this group have a chat room for it's members? And, if not, do any members recommend any HCV chat rooms outside of this group? Thanks again for the welcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 Hi , Welcome !!! I, also, have not treated and do not plan to treat. I use Dr Berkson's protocol for my Hep C. I have few symptoms. I'll be 76 Thursday and have had Hep C 1b at least 45 years. I was diagnosed with liver disease in 1966. Diagnosed as Hep C in 1999. My labs also remain constant and nearly normal. And my doctors feel there is no reason to treat considering age, slow progression, etc. I have not found many groups(actually any but the Australia group. One started a couple of years ago, but it is virtually inactive) that really focus on alternative treatment--Don (moderator)posts a lot of good info and does include alternative IF he can find some. The doctors are mostly afraid to talk about alternatives as there is no pharmaceutical company to back them in case of lawsuit and because companies are forbidden, by law, to say supplements can help on advertisements for supplements. I, too, lost a friend to Hep C several years ago. She was on transplant list when she developed cancer and could not be treated for cancer because of her liver. I have another friend who is currently on TP list and is using alternatives. If I can help in any way, you may post or email direct. I live in Texas. Again, welcome, SuziQ > > Thanks for the welcome! > > My name is and I'm in Washington State. > I am not new to HCV.  I am 1a chronic active, fairly symptomatic (flu-like > symptoms)even though my blood work and biopsy's have come back good so far over > many years time. I've seen a ton of doctors over the years, but the majority > have tagged me as a non-canidate for tx. Mostly, due to the my age, fragility, > anxiety/depression, length of infection (30 years) and post-menapausal state. > I am okay with this dx for now, as I fear the long term side effects of > Interferons/combo therapies. > > That's not to say that I don't support each individuals decission to choose > their own healing path. I'm all for free choice. > I've been down the SSI road and lost my case after a long 6 year battle. I may > re-apply as advised by lawyers, but will need to regain strength before > considering going back down that long road. >  I am just looking to connect/ learn/share with others who can relate and > understand. > > Years back, I was a moderator for a then new online group called HCV Anonymous. > It has been sometime since I have been active on any support site, but felt it > may be time to try and get back in touch. > I recently lost another friend to liver failure (2 in 1 year) due to HCV, and > the toll has been rather harsh, as loss can be. > > Does this group have a chat room for it's members? >  And, if not, do any members recommend any HCV chat rooms outside of this group? > > Thanks again for the welcome. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 Welcome First question I have to ask is - what about the "post-menopausal state"?? I did my first tx and went through menopause at the same time.I like the idea of a real live chat room; but, it's been years and years since I have done that. I wouldn't have a clue how to start one though.By the way, as I write these words, I'm just up across the border in Vancouver right now. However, I actually live on Vancouver Island. Probably, when I look at some other e-mails, Debbie as already identified herself - from Anacourtis and Steve is not far from her.Gloria Thanks for the welcome! My name is and I'm in Washington State. I am not new to HCV. I am 1a chronic active, fairly symptomatic (flu-like symptoms)even though my blood work and biopsy's have come back good so far over many years time. I've seen a ton of doctors over the years, but the majority have tagged me as a non-canidate for tx. Mostly, due to the my age, fragility, anxiety/depression, length of infection (30 years) and post-menapausal state. I am okay with this dx for now, as I fear the long term side effects of Interferons/combo therapies. That's not to say that I don't support each individuals decission to choose their own healing path. I'm all for free choice. I've been down the SSI road and lost my case after a long 6 year battle. I may re-apply as advised by lawyers, but will need to regain strength before considering going back down that long road. I am just looking to connect/ learn/share with others who can relate and understand. Years back, I was a moderator for a then new online group called HCV Anonymous. It has been sometime since I have been active on any support site, but felt it may be time to try and get back in touch. I recently lost another friend to liver failure (2 in 1 year) due to HCV, and the toll has been rather harsh, as loss can be. Does this group have a chat room for it's members? And, if not, do any members recommend any HCV chat rooms outside of this group? Thanks again for the welcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 > Welcome to our little family , As Gloria mentioned I live in Anacortes. Whereabouts in Wa. do you live? I will most likely be starting treatment before the end of the year. I am genotype 1a and have had hepc for around 30 yrs. Two yrs ago when I was diagnosed my biopsy results were grade 1 stage 1. I had my gallbladder removed in june of this year and my surgeon also had a biopsy done on my liver and the results came back as grade 3 with cirrhosis stage 4. I see my gastro on the 10th of next month, so I'll know more then what is going to come of it. Hey Gloria, How far is it from Vancouver to the border? Anyway ,again welcome to the group. Debbie > > > > > > ________________________________ > > > Thanks for the welcome! > > My name is and I'm in Washington State. > I am not new to HCV. I am 1a chronic active, fairly symptomatic (flu-like > symptoms)even though my blood work and biopsy's have come back good so far over > many years time. I've seen a ton of doctors over the years, but the majority > have tagged me as a non-canidate for tx. Mostly, due to the my age, fragility, > anxiety/depression, length of infection (30 years) and post-menapausal state. > I am okay with this dx for now, as I fear the long term side effects of > Interferons/combo therapies. > > That's not to say that I don't support each individuals decission to choose > their own healing path. I'm all for free choice. > I've been down the SSI road and lost my case after a long 6 year battle. I may > re-apply as advised by lawyers, but will need to regain strength before > considering going back down that long road. > I am just looking to connect/ learn/share with others who can relate and > understand. > > Years back, I was a moderator for a then new online group called HCV Anonymous. > It has been sometime since I have been active on any support site, but felt it > may be time to try and get back in touch. > I recently lost another friend to liver failure (2 in 1 year) due to HCV, and > the toll has been rather harsh, as loss can be. > > Does this group have a chat room for it's members? > And, if not, do any members recommend any HCV chat rooms outside of this group? > > Thanks again for the welcome. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 DebI believe that I could be at the Peace Arch crossing in less than an hour from where I am right now. Do you know what though... I'll bet that your Gastro wants you to start tx as soon as possible. Meaning, before the end of Sept or so....Gloria > Welcome to our little family , As Gloria mentioned I live in Anacortes. Whereabouts in Wa. do you live? I will most likely be starting treatment before the end of the year. I am genotype 1a and have had hepc for around 30 yrs. Two yrs ago when I was diagnosed my biopsy results were grade 1 stage 1. I had my gallbladder removed in june of this year and my surgeon also had a biopsy done on my liver and the results came back as grade 3 with cirrhosis stage 4. I see my gastro on the 10th of next month, so I'll know more then what is going to come of it. Hey Gloria, How far is it from Vancouver to the border? Anyway ,again welcome to the group. Debbie > > > > > > ________________________________ > > > Thanks for the welcome! > > My name is and I'm in Washington State. > I am not new to HCV. I am 1a chronic active, fairly symptomatic (flu-like > symptoms)even though my blood work and biopsy's have come back good so far over > many years time. I've seen a ton of doctors over the years, but the majority > have tagged me as a non-canidate for tx. Mostly, due to the my age, fragility, > anxiety/depression, length of infection (30 years) and post-menapausal state. > I am okay with this dx for now, as I fear the long term side effects of > Interferons/combo therapies. > > That's not to say that I don't support each individuals decission to choose > their own healing path. I'm all for free choice. > I've been down the SSI road and lost my case after a long 6 year battle. I may > re-apply as advised by lawyers, but will need to regain strength before > considering going back down that long road. > I am just looking to connect/ learn/share with others who can relate and > understand. > > Years back, I was a moderator for a then new online group called HCV Anonymous. > It has been sometime since I have been active on any support site, but felt it > may be time to try and get back in touch. > I recently lost another friend to liver failure (2 in 1 year) due to HCV, and > the toll has been rather harsh, as loss can be. > > Does this group have a chat room for it's members? > And, if not, do any members recommend any HCV chat rooms outside of this group? > > Thanks again for the welcome. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 took me about 8 mths From: ann winters <dasflueff@...>Subject: [ ] Welcome Cc: dasflueff@...Date: Friday, October 8, 2010, 11:57 AM Hi my name is Ann but I go by Cordie. I am a non responder times 2. finished my last gig last dec. I also have developed cirrosis. Am now disabled but only ssi. waited to long to apply. I do not think medical covers Liver transplants( .jk ) I have to smile. At this point I am staying at my mothers ( had to leave my home due to domestic conflicts with the guy )-while looking for subsidised housing. Greatful for that.I am not sure whether or not my symptoms are from my poor iver or the pegasys. does any one know long term effects of interferon /ribavarin.? I hope you are all doing well. It is a hard fight but we are brave , I have been told.Take in some sun. Lots of love Cordie. Ps thank you for taking me in. Hope I can bring someting to table. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Cordie,First off I am very glad you found us. You are so welcome here and you have found a safe place to deal with what you are going thru. Everyone here has been fighting their own battle with HCV and we all understand. If you want to just vent.. that's fine. I am so sorry you are having to deal with all the other craziness when you are sick. My heart just breaks for you. I am pretty lucky. After a horrible first marriage and a good 8 years on my own as a single mom I found my Prince Charming and he has been my rock from the moment I was diagnosed til today. A lesser man would have taken off running. I am a firm believer in the "everything happens for a reason" way of thinking. The guy you had wasn't good enough for you. The one that is good enough is looking for you. And you will find him when the time is right. I hope you can find some comfort in that.I went thru tx in 2005-2006 for 48 weeks. Luckily I only had to do it once. I am still SVR. I still have issues from treatment. I never really recovered all the way. I too am totally disabled. With me, Fibromyalgia set in during treatment.. that's what holds me back til today. The brain fog is horrible and the pain.. I won't go there. I was at my Liver Specialists office just last week. It was my 5 year check. He said that it can take many years for some of the bad effects of the Interfuron to wear off especially if someone had a hard time during treatment. I have seen people feel great and back to normal in a couple of months. I also know people who still have lingering effects. It seems to vary by individual and the amount of the drug taken. I was on almost 3 times the recommended dose of Ribavirin and more than double the recommended dosage of Peg-Interfuron. My doctor knew I was going to be in trouble after treatment was over but I was so bad when I started treatment that I was headed for a liver transplant if I didn't have it. I was told I'd have to go on the list within a few months and I'd probably die waiting for a liver. So my doctor was very aggressive with the treatment. There is a ton of information in the Library on this site.. Don has done a great job putting that together for all of us. You will also find a lot of support here. We all kind of look out for each other. Get comfortable, read a bit and jump in whenever you want. I am very glad you are here.Hugs,Teri MOVE ON. It's just a chapter in the past, but don't close the book. Just turn the page.From: ann winters <dasflueff@...> Cc: dasflueff@...Sent: Fri, October 8, 2010 10:57:46 AMSubject: [ ] Welcome Hi my name is Ann but I go by Cordie. I am a non responder times 2. finished my last gig last dec. I also have developed cirrosis. Am now disabled but only ssi. waited to long to apply. I do not think medical covers Liver transplants( .jk ) I have to smile. At this point I am staying at my mothers ( had to leave my home due to domestic conflicts with the guy )-while looking for subsidised housing. Greatful for that.I am not sure whether or not my symptoms are from my poor iver or the pegasys. does any one know long term effects of interferon /ribavarin.? I hope you are all doing well. It is a hard fight but we are brave , I have been told.Take in some sun. Lots of love Cordie. Ps thank you for taking me in. Hope I can bring someting to table. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2010 Report Share Posted November 10, 2010 Good Morning , and thanks for the introduction. I don't know exactly what information you are looking for, is it physical therapy, bracing, genetics,disease specifics, support groups in your area or indiosyncracies or...? CMT 2D is axonal, meaning the problem is within the nerve itself.http://neuromuscular.wustl.edu/time/hmsn.html#2d While there is no specific treatment available right now, a group of international researchers is meeting this week to discuss clinical trials and protocols for all of the known Type 2 CMT. In the meantime, many of us have found exercise and good nutrition to be of benefit. With young children, their play can be the best exercise. I'm sure other Moms will jump in to say hello and offer their experience. Aimee and Ashlee are lucky knowing their genetic type of CMT. There is a research program ongoing for CMT 2 at the The P. Hussman Institute for Human Genomics (HIHG) wat the University of Miami School of Medicine. Contact info hihginfo@... Tel: 1-877-686-6444 I have CMT 2, but haven't been subtyped to exact mutation, but I am part of this research project. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2010 Report Share Posted November 10, 2010 , Welcome to the group. Find a good pediatric neurologist and make sure he understands CMT. There are all levels of competency out there. Good luck. With all the great research going on out there, changes are coming and your girls will benefit. Keep positive thoughts :-) I have a granddaughter the same age as your girls. it's a great age, don't let worry about CMT keep you, and them, from enjoying life. Jeanne > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Hi Geri - Of course I remember you. Glad to hear you are still kickin'. Hugs, L. On 1-Jan-11, at 11:09 PM, Geri Logan wrote: > Hi , > > I have missed you , welcome to this wonderful group! I know you will > like us! We have some catching up to do, my CMT has gotten worse > since I last wrote you. I'm in a W. chair, and haven't had a pr of > shoes for years because of ins, and have been wearing slipper > forever.My hands have gotten worse but I still paint, would love to > see more of you painting.....So very glad you found us and joined > this group. > > Geri Logan > ps do you remember me? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Welcome ! It's good to see your name and hear from you again. I used to receive the CMT International Newletters. It was such a help to me when I was first diagnosed back in 1995 with CMT1. Thank you for your support and all the information you have provided. Crock Tipton, Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 I must really be getting old if I'm deemed a legend. Thanks, anyway. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 , I agree with the legend part but not the old part! Its great to have you on the list. I first met you 13 almost 14 years ago My how time flies. in California a Quote Link to comment Share on other sites More sharing options...
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