Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 If your doing that well i would stick with what your doing.Iam in a wheelchair for 5 yrs ive had MS since 1989.Iam useing betaseron . My doctor is sceptical about LDN so iam going to give him the DVD AND SEE WHAT SHE THINKS tommorrow.Ive been in a bout the last 6 yrs i dont no what to do.Iam 51 yrs old And iam ready for anything.Terry Maxedon <terry@...> wrote: This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with RR MS and have been using Avonex for six years. I have never missed a shot in all those years. I am fortunate that my condition is very good. I run 4-5 days a week and you would not know I had MS if you saw me on the street. I am careful to follow the swank diet pretty closely and limit dairy. I am tired of getting sick once a week from the shots and am concerned about long term effects of this drug along with motrin for the side effects which I need once a week as well. I have read a bit about LDN and went to a doctor recently who is willing to prescribe it for me. My problem is I am nervous, you know the old adage "If it aint broke don't fix it". Since I started the Avonex I have only had a few very small exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any side effects from the LDN and if not stopping the Avonex. So here's my question. Is it worth the Risk?Terry Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I am not sure but I don't think Avonex mixes well with LDN.Becauer they have opposing effects. Copaxone is the only one of the "CRAB" drugs that can be taken along with LDN.(If I am correct.Others here know much more than I do about this soi hopefully they will chime in) Nola Re: [low dose naltrexone] Risk? If your doing that well i would stick with what your doing.Iam in a wheelchair for 5 yrs ive had MS since 1989.Iam useing betaseron . My doctor is sceptical about LDN so iam going to give him the DVD AND SEE WHAT SHE THINKS tommorrow.Ive been in a bout the last 6 yrs i dont no what to do.Iam 51 yrs old And iam ready for anything.Terry Maxedon <terryfischmaxedon> wrote: This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with RR MS and have been using Avonex for six years. I have never missed a shot in all those years. I am fortunate that my condition is very good. I run 4-5 days a week and you would not know I had MS if you saw me on the street. I am careful to follow the swank diet pretty closely and limit dairy. I am tired of getting sick once a week from the shots and am concerned about long term effects of this drug along with motrin for the side effects which I need once a week as well. I have read a bit about LDN and went to a doctor recently who is willing to prescribe it for me. My problem is I am nervous, you know the old adage "If it aint broke don't fix it". Since I started the Avonex I have only had a few very small exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any side effects from the LDN and if not stopping the Avonex. So here's my question. Is it worth the Risk?Terry Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 we having been lots of success with docs who are taking the time watching the dvd. cyndiOn Aug 7, 2006, at 5:49 PM, Victor Nicassio wrote: If your doing that well i would stick with what your doing.Iam in a wheelchair for 5 yrs ive had MS since 1989.Iam useing betaseron . My doctor is sceptical about LDN so iam going to give him the DVD AND SEE WHAT SHE THINKS tommorrow.Ive been in a bout the last 6 yrs i dont no what to do.Iam 51 yrs old And iam ready for anything.Terry Maxedon <terry@...> wrote: This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with RR MS and have been using Avonex for six years. I have never missed a shot in all those years. I am fortunate that my condition is very good. I run 4-5 days a week and you would not know I had MS if you saw me on the street. I am careful to follow the swank diet pretty closely and limit dairy. I am tired of getting sick once a week from the shots and am concerned about long term effects of this drug along with motrin for the side effects which I need once a week as well. I have read a bit about LDN and went to a doctor recently who is willing to prescribe it for me. My problem is I am nervous, you know the old adage "If it aint broke don't fix it". Since I started the Avonex I have only had a few very small exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any side effects from the LDN and if not stopping the Avonex. So here's my question. Is it worth the Risk?Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I hope so cyndi iam seeing her tommorrow VicCyndi Lenz <psychrn@...> wrote: we having been lots of success with docs who are taking the time watching the dvd. cyndi On Aug 7, 2006, at 5:49 PM, Victor Nicassio wrote: If your doing that well i would stick with what your doing.Iam in a wheelchair for 5 yrs ive had MS since 1989.Iam useing betaseron . My doctor is sceptical about LDN so iam going to give him the DVD AND SEE WHAT SHE THINKS tommorrow.Ive been in a bout the last 6 yrs i dont no what to do.Iam 51 yrs old And iam ready for anything.Terry Maxedon <terryfischmaxedon> wrote: This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with RR MS and have been using Avonex for six years. I have never missed a shot in all those years. I am fortunate that my condition is very good. I run 4-5 days a week and you would not know I had MS if you saw me on the street. I am careful to follow the swank diet pretty closely and limit dairy. I am tired of getting sick once a week from the shots and am concerned about long term effects of this drug along with motrin for the side effects which I need once a week as well. I have read a bit about LDN and went to a doctor recently who is willing to prescribe it for me. My problem is I am nervous, you know the old adage "If it aint broke don't fix it". Since I started the Avonex I have only had a few very small exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any side effects from the LDN and if not stopping the Avonex. So here's my question. Is it worth the Risk?Terry Groups are talking. We´re listening. Check out the handy changes to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 let us know how it goescyndiOn Aug 7, 2006, at 7:58 PM, Victor Nicassio wrote: I hope so cyndi iam seeing her tommorrow VicCyndi Lenz <psychrn@...> wrote: we having been lots of success with docs who are taking the time watching the dvd. cyndi On Aug 7, 2006, at 5:49 PM, Victor Nicassio wrote: If your doing that well i would stick with what your doing.Iam in a wheelchair for 5 yrs ive had MS since 1989.Iam useing betaseron . My doctor is sceptical about LDN so iam going to give him the DVD AND SEE WHAT SHE THINKS tommorrow.Ive been in a bout the last 6 yrs i dont no what to do.Iam 51 yrs old And iam ready for anything.Terry Maxedon <terryfischmaxedon> wrote: This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with RR MS and have been using Avonex for six years. I have never missed a shot in all those years. I am fortunate that my condition is very good. I run 4-5 days a week and you would not know I had MS if you saw me on the street. I am careful to follow the swank diet pretty closely and limit dairy. I am tired of getting sick once a week from the shots and am concerned about long term effects of this drug along with motrin for the side effects which I need once a week as well. I have read a bit about LDN and went to a doctor recently who is willing to prescribe it for me. My problem is I am nervous, you know the old adage "If it aint broke don't fix it". Since I started the Avonex I have only had a few very small exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any side effects from the LDN and if not stopping the Avonex. So here's my question. Is it worth the Risk?Terry Groups are talking. We´re listening. Check out the handy changes to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Terry, I also have RRMS. It was suspected for 20yrs. I went along on NO medicine for the first fourteen and a half years...and with no residual effects from the attacks that I had. Five years ago, I had a bad attack and started Avonex. Two years into Avonex, I went 100% blind in one eye from ON. I recovered from both with only mild effects remaining. However, on Avonex, I detererated in other ways. My fatigue continued to increase, I began to notice cognitive difficulties, weakness and unsteadiness increased or began, and of course my mood and outlook suffered as well. I began to wonder how long I would be able to continue working. The point Of my story is: My disease continued to PROGRESS. Avonex does not even claim to stop progression. LDN does. You are doing so well and I imagine you want to stay that way. I'm pretty sure that you won't on Avonex. I have been on LDN for 57 days. I am less tired, stronger, steadier...and MUCH happier than I was 2 months ago. I've made my decision! Now, you have to make YOURS. Also, you will not be able to take LDN with Avonex.Copaxone is the only CRAB drug that is compatible.Avonex supresses the immune system and LDN works to enhance it. They are opposites.Go to www.gazorpa.com/LDNFAQ . It wil answer a lot of your questions. > My problem is I am nervous, you know the old adage " If it > aint broke don't fix it " . Since I started the Avonex I have only had a few very small > exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any > side effects from the LDN and if not stopping the Avonex. So here's my question. Is it > worth the Risk? > Terry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 > > This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with > RR MS and have been using Avonex for six years. I have never missed a shot in all those > years. I am fortunate that my condition is very good. I run 4-5 days a week and you would > not know I had MS if you saw me on the street. I am careful to follow the swank diet pretty > closely and limit dairy. I am tired of getting sick once a week from the shots and am > concerned about long term effects of this drug along with motrin for the side effects which > I need once a week as well. I have read a bit about LDN and went to a doctor recently who > is willing to prescribe it for me. My problem is I am nervous, you know the old adage " If it > aint broke don't fix it " . Since I started the Avonex I have only had a few very small > exacerbations. I am thinking about starting LDN along with the Avonex to see if I have any > side effects from the LDN and if not stopping the Avonex. So here's my question. Is it > worth the Risk? > Terry > -- I used Avonex for three years and I know what you're talking about with the side-effects. Most unpleasant. I started LDN because Avonex, Copaxone and Novantrone wasn't helping me. You're story is different. I don't know how to advise you. Life is risky. Artie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 > > This is my first post. I am a 49 year old male that was diagnosed over 10 years ago with > RR MS and have been using Avonex for six years. I have never missed a shot in all those > years. =============================================================== This has to be a decision only you can make. I was diagnosed in 2000 after MS had been seriously effecting my every day life for about two years before that. However, my first symptom occurred in 1981 with blurred vision in one eye and later in 1985 the complete loss of sight in one eye. The sight returned after a week. Throughout the 80's I ran five marathons, four triathalons and about 70 half marathons or fun runs.(All as an enthusiastic amature). I also played squash and football twice a week until 1998 when I started falling over and the MS had really set in. I had no medication at all until 2000 when I was diagnosed and given steriods to take. I stopped them around 2002 and have only had one lot of steriod IV in 2005 after a water infection left me unable to move at all. I suppose the point I'm making is that if I had been diagnosed in 1981 would I have done anything different and if I had would the course of my MS taken a different turning for better or worse? Would I have missed out on 17/18 years of what was relatively trouble free fit years. Who knows? I wish I had known about LDN in 2000. I reached 6.5 EDSS around Sept 2005 when I started LDN and have been stable at that point since. If I was you I wouldn't rock the boat and carry on as you are, but if you get a relapse or your condition gets worse I would stop the Avonex and get on LDN. Unfortunately there is no correct answer just opinions and this is mine. Sorry to ramble on! Good luck Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Terry, Throw the Avonex out the window. You will be okay. I will bet you cold hard cash when you quit the Avonex you will fell BETTER than you do now. Your motor skills will improve and your muscles and bones won't be aching so much. I speak from experience. The bad headaches will go away too. You will notice the difference right away. Sincerely, Juice [low dose naltrexone] Re: Risk? >> This is my first post. I am a 49 year old male that was diagnosedover 10 years ago with > RR MS and have been using Avonex for six years. I have never misseda shot in all those > years. ============ ========= ========= ========= ========= ========= ======This has to be a decision only you can make. I was diagnosed in 2000after MS had been seriously effecting my every day life for about twoyears before that. However, my first symptom occurred in 1981 withblurred vision in one eye and later in 1985 the complete loss of sightin one eye. The sight returned after a week.Throughout the 80's I ran five marathons, four triathalons and about70 half marathons or fun runs.(All as an enthusiastic amature). I alsoplayed squash and football twice a week until 1998 when I startedfalling over and the MS had really set in. I had no medication at all until 2000 when I was diagnosed and givensteriods to take. I stopped them around 2002 and have only had one lotof steriod IV in 2005 after a water infection left me unable to moveat all.I suppose the point I'm making is that if I had been diagnosed in1981 would I have done anything different and if I had would thecourse of my MS taken a different turning for better or worse? WouldI have missed out on 17/18 years of what was relatively trouble freefit years. Who knows?I wish I had known about LDN in 2000. I reached 6.5 EDSS around Sept2005 when I started LDN and have been stable at that point since.If I was you I wouldn't rock the boat and carry on as you are, but ifyou get a relapse or your condition gets worse I would stop the Avonexand get on LDN.Unfortunately there is no correct answer just opinions and this ismine. Sorry to ramble on!Good luckPhil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Yes Juice!!! We all want to say that, but we worry about pushing anyone into something when they are using something that is sort of working for them. But I really wanted to say it more like you did. Bless your honesty and strait forwardness. Aletha [low dose naltrexone] Re: Risk? >> This is my first post. I am a 49 year old male that was diagnosedover 10 years ago with > RR MS and have been using Avonex for six years. I have never misseda shot in all those > years. ============ ========= ========= ========= ========= ========= ======This has to be a decision only you can make. I was diagnosed in 2000after MS had been seriously effecting my every day life for about twoyears before that. However, my first symptom occurred in 1981 withblurred vision in one eye and later in 1985 the complete loss of sightin one eye. The sight returned after a week.Throughout the 80's I ran five marathons, four triathalons and about70 half marathons or fun runs.(All as an enthusiastic amature). I alsoplayed squash and football twice a week until 1998 when I startedfalling over and the MS had really set in. I had no medication at all until 2000 when I was diagnosed and givensteriods to take. I stopped them around 2002 and have only had one lotof steriod IV in 2005 after a water infection left me unable to moveat all.I suppose the point I'm making is that if I had been diagnosed in1981 would I have done anything different and if I had would thecourse of my MS taken a different turning for better or worse? WouldI have missed out on 17/18 years of what was relatively trouble freefit years. Who knows?I wish I had known about LDN in 2000. I reached 6.5 EDSS around Sept2005 when I started LDN and have been stable at that point since.If I was you I wouldn't rock the boat and carry on as you are, but ifyou get a relapse or your condition gets worse I would stop the Avonexand get on LDN.Unfortunately there is no correct answer just opinions and this ismine. Sorry to ramble on!Good luckPhil Quote Link to comment Share on other sites More sharing options...
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