burt
08-01-2003, 01:24 PM
Does anyone have any experience with LDN "Naltrexone", My wife went blind and paralyzed in Janurary, and has only about 5% to 7% recovery in 6 months. We need a medication which will help us. I have read Dr. Bihari's experience with it .
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catstrack
08-02-2003, 02:47 AM
I asked my neuro about LDN, too...after finding the info on the net. He said he wouldn't reccommend it since the clinical trials, etc. for LDN have not passed the FDA yet. Now we know that sometimes the FDA is pretty slow in approving things that may prove useful, too...but I "think" it's legal to prescribe, cause Naltrexone (sp?) has been approved for various other things..just not the FDA for LDN, if I remember correctly. Also, he said something about having to be careful with it, cause several types of pain meds can't be used with it. You can read more about that at the LDN website, which you probably already have the addie.
Anyway, I would be interested, as well, to know if anyone has acutally tried LDN and it helped..and didn't have any problems with it. My neuro has suggested Copaxone or Rebif for me, but I'm still mulling it over and haven't decided what to do yet.
Best of luck to you and your wife...I hope she's doing better real soon.
Anyway, I would be interested, as well, to know if anyone has acutally tried LDN and it helped..and didn't have any problems with it. My neuro has suggested Copaxone or Rebif for me, but I'm still mulling it over and haven't decided what to do yet.
Best of luck to you and your wife...I hope she's doing better real soon.
JoyceF
08-13-2003, 03:55 PM
Hi Burt and Catstrack...it is I that wrote that message over at MSWatch. I wanted to respond to this sooner but it seems I was banned for a week for posting my e-mail addy. I was not aware of that restriction here. In fact there might be a problem with that website addy being here...will see I guess. I certainly have been on the LDN for about 15 months and would love to answer any questions anyone might have about it. So far so good for me...no new exaserbations just as it claims. Burt I'm just not sure how it would help your wife...several have claimed that it has helped with some symptoms but that is not the main objective with this treatment. It is meant to halt progression of the disease and I fully expect that it will. Long story about the clinical trials but I'll try to condense it. There are no clinical trial for ms because there is no one out there with the tens of millions it will take for that. I for one am not willing to wait for that day. Naltrexone is fully FDA approved at a much higher dose of 50 mgs. We take it at only 4.5mg...very safe at that dose. It causes the body to realease endorphins which regulates the immune system back to its normal state. Wish I had a more scientific answer but I'm just an everyday joe or jill if you will...lol. Oh and Catstrack..your doctor is very right...you cannot take this drug with anything containing a narcotic. Copaxone is the only ms drug that can be taken with it..the others work against it somehow. I wish I could post my e-mail addy to answer your questions easier but I'm afraid I cannot. Please write anymore and I will come back hand help you with the answers...{{{hugs}}} and God bless all.
catstrack
08-14-2003, 02:08 AM
Hi Joyce....
Thanks for your reply. :-) How long have you been diagnosed or suffered symptoms and did you try anything else before LDN? How frequent were your relapses before you started taking LDN?
I think I've had MS for maybe 20 years, but my flare-ups (Thank God) have been years apart so far. The last one as 1998 and a couple of "minor" ones in between 1998 and 1990. With 1990 being the first time I went to the neuro after I had alternating pain, numbness and weakness in my legs, which made it a little difficult to walk. Always, I've gone back in to remission and regain total function, but did have an MRI this summer that has showed multiple lesions..with an active one.
Anyway, I can't decide between another "wait and see" period or go on meds, which I am still thinking about. ...so I'm checking out info about LDN, too... and it was good to see someone write that they've been having good results so far. Thanks for posting. Take care and God Bless.
Thanks for your reply. :-) How long have you been diagnosed or suffered symptoms and did you try anything else before LDN? How frequent were your relapses before you started taking LDN?
I think I've had MS for maybe 20 years, but my flare-ups (Thank God) have been years apart so far. The last one as 1998 and a couple of "minor" ones in between 1998 and 1990. With 1990 being the first time I went to the neuro after I had alternating pain, numbness and weakness in my legs, which made it a little difficult to walk. Always, I've gone back in to remission and regain total function, but did have an MRI this summer that has showed multiple lesions..with an active one.
Anyway, I can't decide between another "wait and see" period or go on meds, which I am still thinking about. ...so I'm checking out info about LDN, too... and it was good to see someone write that they've been having good results so far. Thanks for posting. Take care and God Bless.
JoyceF
08-14-2003, 08:30 AM
Hi again Catstrack. Well I too had exaserbations years apart. My first symptom was in 1985 with a bout of Optic Neuritis. I had another one in the other eye in 1989. I did really well over the 10 years after that and I do attribute that to the vigorous exercise that I did now that I know how the LDN works. It causes the body to create endorphins which regulates the immune system? I always heard that exercise was good for MS but I never knew why. I started to slack off of the exercise the last 3 years or so and started to notice myself progressing. Started to search out the best med to take and thankfully I found the the LDN before I ended up on the injectables. I have never taken any other med for my MS. I figured that I would give the LDN a year of my life before I decided whether it would work or not...well here it is 15 months and I'm convinced. There are thousands of us...do you have the site? I am hesitant to mention names here cuz of the rules regarding that. There are so many that are eager to help and give info cuz they are all so thankful they found this stuff. I know it sounds to good to be true and is only about $25.00 a month...that is what will keep it in the dark for a long time no doubt. Sorry to sound so negative about the drug community but come on...it is all just about money isn't it? I say what do you have to lose but to give this a try. Please know that neurologists are not quick to jump on this bandwagon....their hands are pretty tied with all that crap. I hope to never have to see another neuro agin. I found a wonderful endocronologist that gave me the prescription..sorry if I am repeating myself. Good luck to you and keep asking questions..this is how we all learn. Good luck.
JoyceF
08-14-2003, 08:36 AM
Oops..forgot to mention what my symptoms are now. Well I started to notice my balance going downhill and walking long distances became difficult. My legs were numb below the knees. I knew that my ms was progressing at that point. Now, walking is still difficult if it is a long distance and I don't have much numbness left...balance is still off a bit. I really feel that if one keeps themself in good health that the body does heal itself to a certain extent in between attacks so I hope to continue on this path. Nice to have hope and nice to know that I took total control of my health..nice feeling.
pmadt925
10-04-2003, 11:56 PM
Hi, I have another message board that I belong to that is strictly for LDN. It is with Yahoo Groups. I have it booked marked and receive daily emails from the group about the questions and answers people have. Also, a friend of mine started on the LDN and it has stopped her temors and she is walking better. She has seen the difference. I have asked by neuro and he said that he will work with me but would like me on the Avonex for at least a year. (I stopped using for a year. . big mistake on my part) But I also asked about Procarin again, he will work with me on the new meds. He has prescribe the Procarin and that is how I found him. At the beginning of the year, I will again ask about these meds. My last appointment he was stating that he may want to change me to Rebif since he has seen positive results so far. So we will see.
http://groups.yahoo.com/
This is the website for the LDN group, you will need to register and find the group. Best wishes, Paula
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Paula (TN)
http://groups.yahoo.com/
This is the website for the LDN group, you will need to register and find the group. Best wishes, Paula
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Paula (TN)