Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 My name is Angie and I was diagnosed with R/R MS in 1999. My last relapse left me with vision difficulties, and an MRI which showed an active lesion in the occipital lobe. My neuro is now wanting to change my medication - for the third time. I did not do well on Copaxone, Avonex, or Betaserone. He wanted to put me on Tysabri until I told him about the latest brain swelling incidences in Europe. I found out about LDN but wanted to speak with someone who has taken it, their experiences, and how they got their neuro to prescribe it. Mine basically said " no " it wasn't approved for MS soooo he wouldn't write a script. Any information would be greatly appreciated. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 - Hi Angie Welcome! So glad you said no to Tysabri - shame you had to tell your neuro about the deaths and recent troubles - surely HE should be telling you that info!! Pretty much everyone here either takes LDN or wants to so they`ll be plenty of stories to read. My husband has MS - diagnosed about four years ago. The first thing his neuro said was to start taking Avonex. When I did some research and read about the horrors of it (cost, bad side effects, low sucess rate) I started to look for something else and came across LDN. We printed up as much info as was available at the time, gave it to the neuro and told him that we wanted to try LDN before anything else. Also that if he wasnt happy to prescribe it then we`d find someone that would. He did eventually prescribe after we promised (with our fingers crossed!!) that he would start Avonex if LDN didnt " work " . Four years later and my husband is still on LDN, never taken anything else. No disease progression, no exascerbations, no new lesions and some old lesions gone and/or inactive. It costs us less than $70 for a three month supply - one pill at night - no side effects! Your neuro should be working with you and honoring your requests not pushing toxic drugs on you - it`s your life and you should be entitled to take whatever you like. It`s not illegal after all. Plenty of people take " off label " drugs all the time. My doctor prescribed an anti depressent for me recently (I`m not depressed) but it works great as a sleeping pill when taken at night. Prescribing off label is done all the time. It it were me, I`d just find someone who will prescribe for you. It doesnt have to be a neuro - plenty of people have had more luck with just a general doctor. Let us know where you are and maybe someone knows of a prescribing doctor nearby. Good luck! Bev in SF Husband with MS LDN for four years -- In low dose naltrexone , " idk1205 " <idk1205@...> wrote: > > My name is Angie and I was diagnosed with R/R MS in 1999. My last > relapse left me with vision difficulties, and an MRI which showed an > active lesion in the occipital lobe. My neuro is now wanting to change > my medication - for the third time. I did not do well on Copaxone, > Avonex, or Betaserone. He wanted to put me on Tysabri until I told him > about the latest brain swelling incidences in Europe. I found out > about LDN but wanted to speak with someone who has taken it, their > experiences, and how they got their neuro to prescribe it. Mine > basically said " no " it wasn't approved for MS soooo he wouldn't write a > script. > > Any information would be greatly appreciated. > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 I am in my 19th IV session of Tysabri and because of the past unfortunate deaths related to it errently my doctor makes me take MRIs twice per year, they show that my MS lesions have shrunk! He tells me that he is not comfortable prescribing LDN along with it But unfortunately he has to be very careful and watch his as*! Tysabri is no cure or for this monster we know as MS but it stops disease progression long enough for our bodies to repair any inflicted damage and hopefully for our real cure to come forth! __,_. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Mark I`m glad it appears Tysabri is working for you. You wont find any fans of it here I`m afraid and you cant take it along with LDN. My husband`s lesions have either shrunk or disappeared without having infusions - just one pill at night! Even one death from Tysabri would be enough to put me off and now with all the info about Melanoma is just not an option. - In low dose naltrexone , Mark <jarheaddad56@...> wrote: > > I am in my 19th IV session of Tysabri and because of the past unfortunate deaths related to it errently my doctor makes me take MRIs twice per year, they show that my MS lesions have shrunk! He tells me that he is not comfortable prescribing LDN along with it But unfortunately he has to be very careful and watch his as*! Tysabri is no cure or for this monster we know as MS but it stops disease progression long enough for our bodies to repair any inflicted damage and hopefully for our real cure to come forth! > > > __,_. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Hi Angie, My Dr. Told me no to the LDN, he put me on copaxon, then on Rebif ( however you spell it) Sorry didnt pay attention to those meds, just didnt feel that was the right thing for me. So I took it upon myself and order Naltraxone from Alldaychemist and make my own ldn. And everyday I feel better. I have had MS for 12 years now and LDN has been the best thing for me. Elena From: idk1205 <idk1205@...>Subject: [low dose naltrexone] MS and LDNlow dose naltrexone Date: Wednesday, October 15, 2008, 1:50 AM My name is Angie and I was diagnosed with R/R MS in 1999. My last relapse left me with vision difficulties, and an MRI which showed an active lesion in the occipital lobe. My neuro is now wanting to change my medication - for the third time. I did not do well on Copaxone, Avonex, or Betaserone. He wanted to put me on Tysabri until I told him about the latest brain swelling incidences in Europe. I found out about LDN but wanted to speak with someone who has taken it, their experiences, and how they got their neuro to prescribe it. Mine basically said "no" it wasn't approved for MS soooo he wouldn't write a script.Any information would be greatly appreciated.Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Mark, are you saying that LDN is useless and just help you to spend more ? regards, Shaq On 10/15/08, Mark <jarheaddad56@...> wrote: I am in my 19th IV session of Tysabri and because of the past unfortunate deaths related to it errently my doctor makes me take MRIs twice per year, they show that my MS lesions have shrunk! He tells me that he is not comfortable prescribing LDN along with it But unfortunately he has to be very careful and watch his as*! Tysabri is no cure or for this monster we know as MS but it stops disease progression long enough for our bodies to repair any inflicted damage and hopefully for our real cure to come forth! __,_. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Dear Mark, Make sure to get a copy of your previous MRI reports and the new one in hand so that you can compare them also. My husbands local Neuro told him the opposite (he was taking LDN and she said he was getting worse and should start on one of the crab meds), subsequently his other neuro who we had copies sent to as well, said no read the written report and look at the slides, your one lesion is no longer enhancing and you have no new lesions, congratulations! Now I tell everyone they should examine them and have copies if they wish to have a 2nd opinion. Just to be sure. I am glad to hear the good news that your lesions are shrinking, and it is one of the first good reports I have heard about Tysabri, so that makes me feel better knowing that perhaps it is doing some good after all. My best Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Mark, I am a bit confused. Do you take LDN and Tysabri? Art -- > > I have tried all of the CRABS and seen nor felt anything positive from them except a very evident lightening of my wallet! I have just taken my 19th session of Tysabri and don't " see " anything but my neuro has told me that my MRIs have shrunk! There is no cure for MS yet but it is a viable attempt at stopping MS's progression long enough for our bodies to repair inflicted damage and hopefully the cure to be found. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 I have been taking LDN for the past 9 days...3mgs...today I had very little pain compared to normal...wanting my balance to come back...should I up the dosage or is it too soon to tell? Also, wanting my legs to work again...better...help! how do I know if my pharmacy is a good one? have not seen it on the list....tapioca filler...thanx to allFrom: Mark <jarheaddad56@...>Subject: Re: [low dose naltrexone] Re: MS and LDNlow dose naltrexone Date: Wednesday, October 15, 2008, 10:39 AM I too take LDN in my battle with Multiple Sclerosis, unfortunately a lot of people get turned off just by the word 'NALTREXONE' and then research it and find out that it is used specifically for people who are addicted to Heroin! Stupidity reigns regardless of your station in life Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Lee 9 days is really not very long - if you said 9 months then you would be giving it a real chance! You may or may not get some balance improvement - some are lucky and get symptom relief but some dont - LDN is meant for slowing down and hopefully stopping progression - anything else is a bonus! I have never heard of tapioca as a filler - thats not to say it`s not good - maybe someone else can offer advice about that. If you are at all worried about your pharmacy then choose one from the recommended list to be sure. We have used Skips for nearly four years and couldnt be happier. We live on the west coast and he is on the east but we get the LDN within a few days of re-ordering each time. Hang on in there and be prepared to give it much more time! Bev > From: Mark <jarheaddad56@...> > Subject: Re: [low dose naltrexone] Re: MS and LDN > low dose naltrexone > Date: Wednesday, October 15, 2008, 10:39 AM > > > > > > > > > > > > I too take LDN in my battle with Multiple Sclerosis, unfortunately a lot of people get turned off just by the word 'NALTREXONE' and then research it and find out that it is used specifically for people who are addicted to Heroin! Stupidity reigns regardless of your station in life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 thanks bev.........From: cat707k <bevhk@...>Subject: [low dose naltrexone] Re: MS and LDNlow dose naltrexone Date: Thursday, October 16, 2008, 12:07 AM Lee 9 days is really not very long - if you said 9 months then you would be giving it a real chance! You may or may not get some balance improvement - some are lucky and get symptom relief but some dont - LDN is meant for slowing down and hopefully stopping progression - anything else is a bonus! I have never heard of tapioca as a filler - thats not to say it`s not good - maybe someone else can offer advice about that. If you are at all worried about your pharmacy then choose one from the recommended list to be sure. We have used Skips for nearly four years and couldnt be happier. We live on the west coast and he is on the east but we get the LDN within a few days of re-ordering each time. Hang on in there and be prepared to give it much more time! Bev > From: Mark <jarheaddad56@ ...> > Subject: Re: [low dose naltrexone] Re: MS and LDN > low dose naltrexone > Date: Wednesday, October 15, 2008, 10:39 AM > > > > > > > > > > > > I too take LDN in my battle with Multiple Sclerosis, unfortunately a lot of people get turned off just by the word 'NALTREXONE' and then research it and find out that it is used specifically for people who are addicted to Heroin! Stupidity reigns regardless of your station in life > Quote Link to comment Share on other sites More sharing options...
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