Why I’m Considering Low-dose Naltrexone for My MS
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Ever since my post of last week stating that I was ready to get back on a disease modifying therapy for my MS, I’ve been hearing from our Life With MS community about that decision. Most are supportive. Some believe I am making a mistake. The greatest number of specific suggestions are that I look into low-dose Naltrexone (LDN) as an option.
It’s been a number of years since we conversed on the topic of LDN. I’ve continued to monitor the progress of research as results have become available and my opinion of LDN as a disease modifying therapy for MS has not changed.
I do not believe that evidence proves that it helps slow the progression of MS.
Why, therefore, am I contemplating the use of LDN if I don’t think it will slow my multiple sclerosis? Because of the anecdotal evidence that it makes life just a little bit easier for people living with MS. Not that the MS gets any better … rather that the up-regulation of endorphins has a positive quality-of-life effect for many living with this disease.
We all know that the living with the disease part of a life with MS can be difficult. Even though clinical results of actual symptom levels don’t seem to be effected by LDN use, patient reports of overall well-being seem to improve. In other words, LDN doesn’t seem to change the course of the disease, but it does seem to have a positive effect on the mental state of people coping with MS.
I liken it to a friend who had some flight anxiety issues and took a prescription drug (which she loved to call “Phuckitall”) to help her relax before and during airplane flights. Nothing about the actual experience changed on the drug for this friend, but the way in which she experienced it did change.
That’s what I hope LDN might do for what I call “the symptom of living with MS.”
I’ve spoken with my MS specializing neurologist about this plan and my thoughts. He is fully supportive of my decision because of my expectations and plans to use LDN in conjunction with other therapies.
I plan to use LDN as a complementary medication for my MS, not an alternative. I will do so knowing that I also need to take other steps to arrest the progression of the disease and not simply hope that "feeling better" is the same as actually "being better". But I do hope that I will feel better.
You see, I have begun to notice more dips and troughs in my overall being in the past few years. I am finding the weight of MS more and more difficult to carry and, even on the days I’m not feeling well, I want to feel better while not feeling great.
Many of us take symptom management drugs for things like bladder issues, spasticity, sleep, pain, and the like. Why shouldn’t I consider a medication that may help my overall well-being as the same sort of symptom management approach?
As it’s not an approved medication where I live, I’ll have to find a GP willing to prescribe the med off-label and then find a compounding pharmacy to fill the script. This will all take time.
I know many who will dispute my statement that LDN doesn’t change the course of the disease MS. Whether it does or does not, for me, isn’t the issue. That it may help me feel a bit better in a relatively safe and cost-effective manner is what is important to me.
Do any of you have thoughts on LDN as part of your MS treatment plan?
Wishing you and your family the best of health.
My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.
Illustration: Gary Whitley/Getty Images
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