I would like info about LDN used for people with MS (Multiple Sclerosis). Experiences, results, advice...?

My mother has had MS for many years. The last 3-4 years she has got worst due to her marriage breaking down. Now she's stable but still in a bad state. Can anyone please tell me about LDN - it's the 1st time I've heard about it. How is it taken and would it help??? Any personal info would be appreciated. I've printed enough info about it from the internet but want to hear personal experiences if it's worth trying...I would like info about LDN used for people with MS (Multiple Sclerosis). Experiences, results, advice...?
My MS Experience


My name is William (Bill) Roberts; I am 58 years old, was diagnosed with RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk, total deafness in my left ear, and inability to concentrate for any period of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many sessions of IV steroids (Solumedrol). As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise. I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition. I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed.


My new neurologist reran all of the standard MS tests, including MRIs. After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug LDN (Low Dose Naltrexone), for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for Heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it.


I began, around the first of July, 2005, with 1.5 Mg per day for the first week, then increased to 3.0 Mg from then, on. I also stopped taking the Rebif at that time. While I did not notice any improvement for the first three months, I also had NO flares either. Then, I began to notice that my breathing was improving- I could take time off from the oxygen for extended periods of time; the strength in my legs and arms was improving- I began to be able to take short walks with a walker, then longer walks, then changed to a cane, then actually walked to the bathroom without assistance! My sleep began to improve, as well. Improvement continued and actually increased, so that when I went for my six month check-up with my neurologist, I did not even take my cane, and I blew away my neurologist by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year's end. In April of 2006, after my wife was diagnosed as a borderline diabetic, I walked in a “Walk For Diabetes.” I walked just over 21/2 miles, with no assistance, beginning with the starting group and finishing with them, something else I never thought I would be able to do again. I spent the next summer building a fence in our back yard and re-landscaping it.


LDN is NOT a cure for MS. I still have it, and I still have issues with it that I have to deal with everyday, but I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me. It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease brings researchwith the first group out and finishing with the first group in! I was both pleased and proud to accomplish ers MUCH closer to finding a true cure.


Pharmaceutical companies need to be able to make a profit off of the drugs they develop through their research. The cost of such research is very high, and LDN, a very inexpensive medication, will not produce the profits those companies need in order to warrant their doing the trials to get it approved for MS, as well as ALS, Alzheimer’s, Parkinson’s, AIDS, Crohn’s, many types of cancer, child autism, and even Rheumatoid arthritis. .


Websites- http://www.lowdosenaltrexone.org and http://www.ldners.org





Thank you. Sincerely,


BillI would like info about LDN used for people with MS (Multiple Sclerosis). Experiences, results, advice...?
I have been on LDN for 2 years and 6 months for SPMS and TM and doing great. Go to www.ldninfo.org and http://www.freewebs.com/crysta…





I also keep an LDN Dr list of Dr's that prescribe LDN in the USA and Overseas so email me if you need a Dr.

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LDN (Low Dose Naltrexone) must be prescribed by a doctor or nurse practitioner and must then be prepared by a compounding pharmacy. It's inexpensive and only costs me around $25 a month. Most people start out at 3 mg. and then go up to 4.5 mg. It is taken at night. LDN followers say it must be taken after 11 p.m., I think it is. I emailed a researcher who told me it didn't matter when it was taken. It can cause sleep disturbances so I took it in the morning for months. Finally I switched to bedtime.





I really do believe LDN helped me. The researcher I emailed told me to try LDN for two months and if it didn't help to go off it and get on one of the approved MS treatments. I think two months is too short though. I think a person should give it at least 6 months to a year to see if it makes a difference. That is just my opinion though.





Is your mother on any of the disease modifying drugs commonly called the CRAB-T's? That's Copaxone, Rebif, Avonex, Beteseron and Tysabri. LDN can be taken with Copaxone but not with the others.





Does your mother have access to the internet? I would like to invite both of you to join my group MSersLife on Yahoo Groups. The link is below. There are others on my group who are currently using LDN and you could get their personal experiences.





I think it's wonderful that you are trying to help your mother!





hugs)))


Sharon
I have MS but never took LDN. But, I know someone who did and she swore never to take a CRAB. So several years later she got worse and had to relent and go to Copaxone. It works for some, not others, as do many meds. Steroids makes me feel worse, not better, for instance. MS is different for everyone... makes it worse, maybe?





Hopefully you'll get some personal experiences!





Good luck.


Kim
I started taking LDN last March, and after about a week of taking it, my energy levels went back to normal. I was able to handle a full day of activity. Essentially it gave me my life back. I have not had an exacerbation since 2002. Prior to this I took Copaxone and I had symptoms that changed every few months. While they were minor, they were very annoying. I now only have minor pins and needles in my arms and legs. LDN must be taken at night in between 10 PM and midnight at a dose of 4.5 milligrams. You must order it from a pharmacy that does compounding since it comes in high doses. I would also recommend ordering it from a pharmacy that regularly compounds


LDN.. All this info is available on the net. I strongly suggest you read what you printed from the internet. I have no idea if LDN would help your mother or not and nobody could tell you that. Everybody has a different experience with MS and as consequence we all respond differently to the various drugs on the market. LDN is not approved by the FDA for MS and as a consequence you may find her neurologist will not prescribe it. And you need to find out if it is compatible with the drugs she is on. Also, if the symptoms your Mother exhibits are due to permanent nerve damage LDN will not help.
Hi Drou





After I heard about the results from OS I went to my wonderful MS Savvy GP (John Kondopoulos, Kilby Heights Medical Centre East Kew VIC) brandishing a printout from the Internet article on LDN, requesting he prescribe me some which he did. I have taken some every day since then but I have to report disappointment, it has made no difference to me.





That's a shame because I really wanted it to work. It is a cheap med because the dose suggested is far smaller (2-3 mg) than the 50 mg tabs provided by the pharmacist so one scrip will last me forever.





It should be noted that breaking the 50 mg into c. 3 mg bits was impossible for me (my fingers are too uncoordinated for fine dexterity now so my husband Ian has to break them up for me.





Still although LDN has been reported to help some with the MonSter, its effectiveness is idiosyncratic (doesn't work for every one) so the only way to assess for yourself is try it. Using LDN is safe and cheap enough to try. If your doctor will prescribe it you only need to fill one scrip to test it for yourself (about $50.00 as I recall, maybe more if you talk your chemist into breaking it up for you).





That's my 5c worth.





I am my own crash test dummy, provided it sounds credible, is deemed safe and it won't break the bank...