MS Strength

For the past several years there has been a bit of a cult following with a drug called LDN (low-dose naltrexone) . While writing at Suite101’s health site, I encountered several readers with MS who promoted the drug in comments sections, as well as a fellow health writer (with hyperthyroidism) who valued and wrote about its merits. There wasn’t much known about the drug then except that it wasn’t FDA-approved for multiple sclerosis patients and it wasn’t clear whether the drug could actually slow MS disease progress. Just recently I read an article from the National Multiple Sclerosis Society’s Momentum magazine with a current view about LDN. Here is what Dr. Allen C. Bowling, a neurologist and professor at the University of Colorado-Denver and Health Sciences Center, reports:

What is Low-Dose Naltrexone?

Dr. Bowling addresses the fact that LDN is getting a great deal of coverage on the internet, including various websites that are run by low-dose naltrexone organizations. Although LDN is reported to help patients with multiple sclerosis, it is considered a CAM or complementary and alternative medicine because it has not been extensively tested for effectiveness in patients with MS. Currently naltrexone is approved for opiate and alcohol addiction, with patients being treated with doses of roughly 50 milligrams/day. Patients who take LDN for MS use about 1.5 to 4.5 milligrams/daily, hence the name.

Naltrexone, which may increase endorphin productivity and increase the body’s sensitivity to it, could very well reduce pain and inflammation, as well as stabilize overall mood. It also may decrease the formation of free radicals (considered harmful) and thus protect nerve cells from injury.

LDN Studies, to Date

Not a great deal of low-dose naltrexone research has been done. Here are some recent studies and their results:

• Two small, preliminary studies of LDN for EAE (experimental autoimmune encephalomyelitis which is an animal model of MS) found that LDN decreased nervous system inflammation, immune cell activation, and possible disease severity. These studies were presented at the annual meeting of the European Congress for Treatment and Research in MS (2008.)
• A small clinical trial on humans with MS (reported at the same meeting this past year) was conducted at the University of California-San Francisco. 80 people were treated for 8 weeks with either LDN or a placebo. The LDN showed no effect on physical functioning, but it showed an improvement in some patients’ mental health and pain symptoms.
• 40 primary-progressive MS patients in Italy were studied in 2008. LDN was administered for 6 months, although there was no placebo-treated control group for comparison. Patients noted an improvement in spasticity, but no effects on depression, fatigue, or overall quality of life. Some patients reported a worsening of pain. Only one patient showed a neurological worsening during the treatment.

What Does this Mean to MS Patients?

Dr. Bowling stresses that the preliminary studies still don’t show enough evidence that LDN effectively reduces multiple sclerosis inflammation/nerve attacks in humans and thereby slows MS’s progression in patients. The studies are a good start in the discovery of what low-dose naltrexone is capable of, although the studies on EAE were done on animals and not true MS patients, and the other studies were brief and the results were conflicting.

Questions Dr. Bowling—as well as other neurologists– still have:

• Does LDN truly and consistently decrease the severity of MS symptoms?
• Does LDN slow the progression of relapsing and/or progressive MS?
• Is LDN safe to use on a long-term basis?
• Does LDN interact with conventional MS medications?

In the meantime, low-dose naltrexone continues to be considered a complimentary and alternative medicine and is being further studied to determine its ability to slow disease progression (like other disease-modifying meds), its long-term safety, and its ability to effectively treat symptoms. At this point, many MS patients have been able to acquire it for “non-MS” use.

For further reference:

Bowling, Allen C, MD. “Low-Dose Naltrexone (LDN): The ‘411′ on LDN.” Momentum, the Magazine of the National Multiple Sclerosis Society. Spring 2009, pp 44 – 46.

I’m in “Whoville” today….

Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.