Born out of our experiences (no pun intended) here at This is MS, where a wonderful community has formed based (originally) on shared and common experience, the Experience Project extends that reach of reassurance and wisdom provided by people who have "been there before" to all people and all experiences.
Specifically, while MS can certainly shape a person, it does not *define* them-- each of us are complex individuals with thousands of experiences that make us who we are, of course one of the most potent being our experiences with Multiple Sclerosis.
Each one of those experiences would be worthwhile to record for your own history, the therapeutic effect of writing, and the benefit it could provide to another who is just now facing something you have already been through (and survived). Your experiences will undoubtedly help countless others.
Participation is of course absolutely free. We have been working passionately on this project for a long time, and really believe in its potential to help others. Taking a few moments to share your experiences with the MS therapies you have tried will help us make that a reality.
Share Your LDN Experiences
Read Others' LDN Experiences
My name is William (Bill) Roberts; I am 57 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, 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 first group out and finishing with the first group in! I was both pleased and proud to accomplish something else I never thought I would be able to do again. Now, I plan to spend the 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 researchers 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,
William (Bill) Roberts
I wish I had answers for you on that, because I have experienced those drugs, too. I have to worry about what the long term effects of all of those drugs will be, too. I am including, here, a simple explanation of how LDN works for PWMS. Again, I am sorry it has not helped you. Bill
LDN- A Simple Explanation
Naltrexone (Low Dose Naltrexone)
The following explains Low Dose Naltrexone (also known as LDN) from a layperson's perspective that everyone should be able to understand.
Please note that we are not medical doctors, and that there is no formal proof of the following statements; they are merely informed hypotheses. You should always do your own research and consult with your doctor before undertaking any medical treatment.
The simple explanation:
Naltrexone is an FDA approved drug (1984) that was originally intended to treat people suffering from opium (e.g., heroin) addiction. It treated these addictions by blocking the "pleasant" effects from the drug, so addicts who took it did not get "high" anymore.
How does it block the "high?" There are receptors in our brain that an opioid like heroin would use to get into the cell and do its deed. Naltrexone blocks those receptors, so the heroin can't have an effect. Think about it like a puzzle piece-- some brain cells have a piece that accepts opium and its derivatives, and the Naltrexone simply matches that piece. When the heroin floats around, it has no where to go.
OK, that's all well and good, but what relevance is there to Multiple Sclerosis?
Well, those opiod receptors in our brains are not JUST for receiving drugs like heroin-- our bodies actually produce opiods every day, among other things, we produce a set of hormones called endorphins. So if you were to take Naltrexone, you would actually block the reception of something your body produces. These hormones, as it turns out, play a very important part in controlling the immune system. Keep this in mind for what we'll talk about below.
The FDA-approved dosage for heroin addicts was 50 milligrams per day. This ensured that those receptors were blocked all day and there was no chance that any heroin could connect with a cell and give the user a "high."
BUT a medical doctor named Dr. Bihari found that if you give someone a much lower dose, say THREE milligrams instead of 50, you would not block the receptors all day, but just for a couple of hours. After that, everything would function as normal.
But the human body is funny-- when you block something, it often responds by producing more. In other words, if you were to take Naltrexone at a low dose (Low Dose Naltrexone, even!) you would block the receptors for a couple hours. The body would notice that it was not receiving the endorphins it produced, so it would think "Since they're not getting though, I must not be producing enough-- turn it up!" The gland responsible for producing the endorphins, called the pituitary, would respond by producing significantly more. Not enough to cause any problems, but enough to make a difference.
So how can this all matter for Multiple Sclerosis? Remember how we discussed above that the endorphins actually regulate the immune system? Well, in Multiple Sclerosis, the immune system is malfunctioning-- it's attacking it's own body. Anything that helps regulate, control, and tame the immune system could potentially have a positive effect on MS. And that's exactly what some people who take LDN report-- a halt of the progression of the disease, and even some improvement in symptoms.
Adding some scientific validity are studies that show that in MS patients, the pituitary gland (which produces endorphins) shrinks as the disease progresses. This shrinkage can be assumed to correspond with less endorphin production, though the link is not concrete. The million dollar question is: is the pituitary gland shrinking BECAUSE of the MS, in which case fixing the pituitary is more like treating a symptom rather than the cause, OR is the pituitary smaller in people who have multiple sclerosis and could potentially be a, if not the, cause of the disease in the first place? In other words, is a shrunken pituitary a cause of MS or is it an effect? If it's a cause, making up for the lower endorphin output by taking something like LDN could have significant positive implications.
There is a catch to all of this-- there are no formal, clinical trials on taking low dose naltrexone for multiple sclerosis. All there is is speculation, a few doctors backing it, and most remarkably, many positive testimonials from patients.
If you would like to copy and paste this article, please credit the source:
This Is MS Unbiased Multiple Sclerosis Community
mine is a strange form that has been sleeping for more than 15 years,now since 2003 is going on with a sec.progressive walking.
dostors told me that most likely it was a benign for that woke up like a sp form.
since 2003 i have done all the traditional and conventional terapy betaferon,avonex mitoxantrone but nothing was really working well,so from one week i'm getting naltrexone in low dose home made.
i use a product named antazone,the liquid solution of 50 mg and dose it with a insuline syringe in order to get the right dose each time.
i 'm very well and i must say that even if it is only week on a very low dosage(2,5 mg)i start to feel improvement for:
fatigue,balancing,bladder empting and may be also in walking,infact my left leg that is the one not ok,seems to start moving better than before.
in conclusion i can only be happy for my naltrexone experiance.
I thought your story was wonderful & inspiring
I live in Sydney (Australia) & I want to try low dose naltrexone, I am feeling really excited about it. I have been SPMS since 1996 and have been managing it with diet, supplements etc (no drugs) Where is Dr Bob Lawrence? Will he prescribe for me?
http://www.msrc.co.uk/index.cfm/fuseact ... pageid/650
You might try Crystal at http://crystalangel6267.webs.com/contactcrystal.htm
Crystal has a list of prescribing doctors
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Sandy,SandyK wrote:I took my first 3 mg pill last night and woke up feeling no different. I had images of me springing out of bed and going for a jog! I am on my 16th year of MS and I want to feel normal again so bad that I was deflated this morning. I will continue taking LDN but I have to be patient. This has to work. I have no more options.
Have you read Sammy Jo's webpage http://ldners.org ? I think you need to give it some more time for sure. It's a very well designed page and it's easy to find what you're looking for. Plus SammyJo is on here and you can PM her when she gets back from Stanford. She's always very helpful.
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