Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Hello Kathleen: Welcome aboard. To see feedback from as far back as Oct, 2002, go to low dose naltrexone, sign in, and then click on " chat " in the left column on the web page. Then, happy surfing. Check www.acam.org and www.lef.org for a forward thinking Doctor in your area that may prescribe LDN. Noland ----- Original Message ----- From: " kathleenkildare " <kathleenkildare@...> <low dose naltrexone > Sent: Thursday, July 10, 2003 11:26 AM Subject: [low dose naltrexone] lurking > I am new to this group and have been lurking for a few days trying to > gather info. I have R/R MS and am on one of the ABCR's. > > My neuro has no interest in learning about this. > > My GP will not interfere with neuro. > > My husband is afraid for me to rock the boat. > > How well do you tolerate heat with LDN? > > Has anyone had MRI and follow-up MRI to see if there is any > progression other than anecdotal? > > How long have some of you been taking this for MS? > > Why do some discontinue? > > I have phone appt set with Dr. Bihari but would like more info so > that I can speak to him intelligently. > > I know and understand this is a leap of faith in some ways but I > would really appreciate feedback. > > Kathleenkildare > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Hi, I don't tolerate heat any better or worst than before I was on the LDN. Dr. Bihari says that LDN STOPS the progression of the disease. I was on copaxone and had a hard time with it. So I stopped it. Copaxone only SLOWS the progression of the disease. I will be getting an MRI in a couple of months but I have only been on LDN for 1 month. Make sure that you ask all your questions to Dr. Bihari. That is what he is there for and he is very easy to talk to. Good Luck Marie ----- Original Message ----- From: " kathleenkildare " <kathleenkildare@...> <low dose naltrexone > Sent: Thursday, July 10, 2003 1:26 PM Subject: [low dose naltrexone] lurking > I am new to this group and have been lurking for a few days trying to > gather info. I have R/R MS and am on one of the ABCR's. > > My neuro has no interest in learning about this. > > My GP will not interfere with neuro. > > My husband is afraid for me to rock the boat. > > How well do you tolerate heat with LDN? > > Has anyone had MRI and follow-up MRI to see if there is any > progression other than anecdotal? > > How long have some of you been taking this for MS? > > Why do some discontinue? > > I have phone appt set with Dr. Bihari but would like more info so > that I can speak to him intelligently. > > I know and understand this is a leap of faith in some ways but I > would really appreciate feedback. > > Kathleenkildare > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 HI there Kathleen, I hate to keep repeating myself but it is not surprising that your neuro is not willing to get with the LDN program. We all have our horror stories with regards to this situation. You must decide for yourself what you feel is right and once you do there will be no stopping you. I decided to take charge of my own health and I can't tell you how wonderful I feel about that at this point. I went into the neuro office and stated to him that in no uncertain terms I was not interested in anything other then trying the LDN. He was each in or out.....well you guessed it. He was out..lol. I then went about searching for a forward thinking doctor. I lucked out, quite simply when I clicked on that link to innovative doctors at the www.lef.org site. I called this endocronologist and asked him over the phone if he would consider it. He surprised me by saying yes, he would have a look and discuss it with me at my appointment. He is my only doctor at this point. Thanking my lucky stars for the info that I received when I needed it most. Been on the LDN for just over a year now. I never really had a problem with heat myself so I cannot comment on that. Not sure if many discontinue to be honest. I do ask that all report their progress wether negative or positive. I have not seen anything negative since I joined up. You are so right that this is a leap of faith. Please let us know what happens. I just want to reinforce the notion that you do not need to do anything but what feels right to you....your doctor is not the one who must deal with this disease so if you think this is the path that you must travel...well by all means don't let them stop you. Good luck Kathleen and please keep us informed. Joyce. From: " kathleenkildare " low dose naltrexone Subject: [low dose naltrexone] lurking Date: Thu, 10 Jul 2003 17:26:21 -0000 I am new to this group and have been lurking for a few days trying to gather info. I have R/R MS and am on one of the ABCR's. My neuro has no interest in learning about this. My GP will not interfere with neuro. My husband is afraid for me to rock the boat. How well do you tolerate heat with LDN? Has anyone had MRI and follow-up MRI to see if there is any progression other than anecdotal? How long have some of you been taking this for MS? Why do some discontinue? I have phone appt set with Dr. Bihari but would like more info so that I can speak to him intelligently. I know and understand this is a leap of faith in some ways but I would really appreciate feedback. Kathleenkildare _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.