Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 hoxwortyg, Just out of my own curiosity, did you have exacerbations after starting/and while on Beta Seron? Or did you have MRIs that showed whether or not you had progressed to any degree? I took Avonex for two years before making the decision to discontinue its use. I had progressed rapidly and to the point that I couldn't walk at all, so obviously, it didn't work for me. I still can't walk at all, but LDN has been good for me in other ways. Maybe in time... I am glad to hear from new users such as yourself, and I hope your friend continues to improve. I can relate to the improved sleep issue! Best of luck! Marcie In a message dated 9/25/2004 8:02:09 PM Central Daylight Time, hoxworthg@... writes: I have been reading the posts of this group for about three months now, and although I had heard about LDN in an odd sort of way, reading all of your letters and feeling all the good wishes made me decide to end my almost eight years on Beta Seron and try Low Dose Naltrexone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Hey hoxworthg, Congratulations on a decision you will not regret! Mind, body and spirit will be effected in a very positive way. It was quite obvious you did your homework before deciding on LDN. I can't wait to hear how you're doing once you start taking good ole LDN! Good luck hox! -----Original Message----- From: hoxworthg [mailto:hoxworthg@...] Sent: Saturday, September 25, 2004 9:00 PM low dose naltrexone Subject: [low dose naltrexone] A new user of LDN I have been reading the posts of this group for about three months now, and although I had heard about LDN in an odd sort of way, reading all of your letters and feeling all the good wishes made me decide to end my almost eight years on Beta Seron and try Low Dose Naltrexone. I am only writing in to add my little bit of knowledge to the pot, and there is not a lot other than to say that the insomnia only seemed to last for a few days. I have a headache a little more often, but Advil helps that. Not taking a shot anymore is wonderful, and I have to think that one of the reasons I began LDN, that it seemed to be a good idea, is that the shots were beginning to become painful, and somewhat dreaded. My feelings of tingling and being off balance were seeming to come back, and I just felt that the Beta Seron had run it's course. I don't think that I will feel that LDN is really working until perhaps a year has gone by without a relapse. I have to say that the Beta Seron had worked very well for me all those years. Before I started taking it, I had the major exacerbation which caused me to have an MRI and know that I had MS (with hindsight, like many that I have read about, I realize that I had it a long time before I truly caught on that something was wrong), went for six months and was hit again, then two months, then two months, then the Beta Seron. A HUGE expense, and a lot of trouble, but the trade off was worth it. My Neurologist had told me years ago that it was possible to develop antibodies that would work against me eventually and maybe that is what has been happening. I have RRMS and feel guilty when I read some of the posts, as I have done remarkably well with this disease, but I still have it, it still affects my daily life by making itself known in small ways, and I am terribly grateful to be able to function basically as I did before. I have high hopes for LDN for myself and a good friend with PPMS who started taking it at my urging about a month before I did. We both contacted Dr. Ayres, and I (from reading all the posts) get my presription sent from Skip's. I have just ordered my second 30 days and have high hopes for continuted success. My friend has been very happy so far with her results. She sleeps " like a baby " , which was not possible before, her balance is better, and she feels better. She was doing so poorly that her Dr wanted her to take the chemo drug, and she was afraid to. She has high hopes that she can go in to her Neurologist in February and surprise him, if not with her progress, at least with her stability. Thanks to all of you for all that you contribute to this page. There is such a wonderful mix of people. I am not very scientific and so the posts that give me the information that I should be looking for myself are received with gratitude. The good wishes that you have for one another's progress is not only wonderful to read, but comforting and gives me faith in the human spirit. I feel that I have gotten to know some of you, just by my reading every day, and I appreciate it, every day. For the information of those that are considering taking LDN, I will keep undating periodically with progress reports on myself and my good computerless friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 rainey, I, myself, started with 3mg for the 1st 3 months then went to 4.5mg. I am now doing 6mg because I experimented with it, and this dose seems to be best for me. I was diagnosed in '97 and progressed very rapidly. I've been unable to walk for 5 years. My GP prescribed it for me. I was lucky. There is a list somewhere of docs that do phone consults. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Thanks for letting us know you have joined the LDNers! I will be hoping that both you and your friend continue to do really well on it. I so agree that this group is wonderful (despite the occasional problems over OT and spam!) And they give me a lot of faith in humanity, too. I am quickly reaching the 6 month mark - no new flair-ups or symptoms to report, so all is great with me. Cinders Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 We also live in Kentucky, western Ky., though. My 16 year old son was diagnosed with MS 3 years ago, and we had great difficulty finding anyone in our area to prescribe LDN. I called all over Kentucky, including all of the compounding pharmacies. There was one GP and one neuro in our area who would prescribe, but the GP would only prescribe if you were a long term patient of hers and had exhausted all other MS treatments, and the neuro is not accepting new patients because she is retiring. Soooooo...We went the phone consult route in hopes that the neuro will see how well my son is doing on it when we see him in November and agree to prescribe it for him. If that doesn't work out for us, we are prepared to " fire " yet another neuro and use a pcp only. Hopefully, if he sees that we are no longer seeing a neuro, he will prescribe it for us. He is a family friend and excellent doctor, but doesn't want to go against our neuro as long as we have one. I really don't see any need for one since my son started LDN, and I have no qualms in getting rid of the new one we are supposed to see in November on the very day I see him! If plan a or b doesn't work, I suppose I will continue to use Dr. , although I feel he is really getting out of control with his costs for the consults, considering most insurances will not cover it. Good luck in your search! And don't give up. It can be done, even though it can get mighty frustrating at times. Kim > > > She lives in Louisville, KY and we found out today > that her neuro will not prescribe LDN. So now the > search. How did you locate a doctor to write the > prescription. > > Thanks for any info. > > Regards, > > Rainey > Quote Link to comment Share on other sites More sharing options...
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