Friday, March 27, 2015

LDN: Low-Dose Naltrexone

Have studies explored LDN therapy and MS?

In three small studies, LDN was found to be safe and well tolerated in patients with MS. A 6-month phase 2 study in Italy also showed that spasticity levels were significantly improved in patients with PPMS (n=40) who took 5mg of LDN daily. Five participants dropped out of the trial and two participants experienced major adverse events. One participant experienced increased disability. Common side effects included urinary tract infections, mild agitation, sleep disturbance, and increased liver enzymes (Gironi, 2008).

In a 17-week randomized, double-blind, placebo-controlled, parallel-group, crossover study in persons with RRMS or SPMS (n=96), no statistical difference was seen in things such as pain, energy, emotional well-being, social, cognitive, and sexual functions, role limitations, health distress, and overall quality of life in patients taking LDN compared to those taking placebo (Sharafaddinzadeh, 2010). However, researchers note that health perception scores were statistically different between the groups throughout the trial and suggest a longer trial is needed to determine LDN’s effect on quality of life for people with MS.

In an 8-week doubled-blind, placebo-controlled, crossover study, patients with MS taking 4.5mg LDN (n=80) reported significantly improved quality of life related to pain, mental health, and cognitive function (Cree, 2010). LDN had no impact on physical symptoms such as fatigue, visual function, or bowel, bladder, and sexual function. Unfortunately, complete data was only available for 60 of the original 80 participants due to dropouts and incomplete data which severely reduces the study’s statistical power.

In a pilot study funded by the National MS Society, low-dose naltrexone, but not high-dose naltrexone, was found to be protective against the development of signs of neurological disease in a mouse model of MS called experimental autoimmune encephalomy (EAE) (Zagon, 2009). In a follow-up study in mice, low doses of naltrexone were found to halt progression of the MS-like disease, reverse neurological deficits, prevent the onset of neurological dysfunction over time (Rahn, 2011).

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Have You Tried Low-Dose Naltrexone?

Monday, March 23, 2015

HealthCentral has launched the new MS Newsletter. It's easy to subscribe here. As a community member, you can also subscribe to my own posts here.

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Have You Signed-Up for the New HealthCentral MS Newsletter?

Tuesday, March 17, 2015

What Does Sick Look Like?

When someone suffers with a cold, infection, or allergies, it becomes much easier to ‘see’ the sickness. Accompanying each of these conditions is inflammation, the kind that often causes redness that is visible to the observer. If we see someone with signs of infection, the outward signs make it easier to avoid that person to reduce the risk of picking up the offending virus or bacteria. Very helpful, in fact, because who ‘wants’ to be sick?

Diseases such as multiple sclerosis also involve inflammation, but not the kind that is visible to the naked eye. Our inflammation is internal, occurring in and around the central nervous system, about as far inside the body as you can get. This type of inflammation can only be detected by special tests.

Do you want to look sick?

Now that’s a tough question. I don’t believe that any of us really want to look sick. But we do appreciate empathy for the unseen. It’s difficult to feel understood when others can’t fully appreciate how complex the effects of our disease are.

Even when you possess the make-up, hair, and clothes of a talk show host and a smile that brightens a room, it’s hard not to feel sick if you don’t feel good or have significant physical or cognitive dysfunction.

What do they really mean?

I suspect that when someone says, ‘But you don’t look sick!”, they really mean to express an acknowledgement that you are facing and overcoming an unknown challenge with an enormous amount of grace and strength.

Or, perhaps, they simply want you to know that you look great!!! Your physical, emotional, and spiritual strengths are shining through the many challenges and disappointments of living with MS.

At risk of annoying some readers, let me suggest that the next time someone says, ‘But you don’t look sick!”, please respond with an enthusiastic, “Thank you!!” and smile with the knowledge that you are stronger than MS.

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"But You Don't Look Sick"

Friday, March 13, 2015

Living with MS for 10-15 Years So Far

Fifteen years ago, I became blind. In under two days, I went from ‘something is just not right’ to ‘all I can see is solid gray.’ It was terribly frightening and I wasn’t sure what to expect for the future.

One thing I knew at that time was that I did not have multiple sclerosis because my brain was clear of ‘white spots’ or lesions. I also didn’t have a brain tumor. I could walk just fine, so I probably didn’t have neuromyelitis optica (NMO) either. This was before the blood test was available to look for NMO markers to make diagnosis easier, but I was to return to the neuro-opthalmologist if I had trouble.

It was a busy March concert season with performances and rehearsals scheduled on more days than not. My calendar was a mess of scribbled notes regarding where and when I had to be in specific locations for work. There was the Baltimore Opera, Fairfax Symphony, National Gallery of Art Orchestra, and other freelance gigs. All of that on top of the 30+ private music students I had at the time.

I was busy, to say the least, and didn’t have time to mess with physical weakness or logistical limitations.

Figuring out how to get around to where I needed to be took a little bit of time since I wasn’t really safe to drive long distances. I felt like I could manage driving the two miles it took to go from my apartment to the school where I taught and I arranged to carpool to rehearsals and performances.

The same day I reached complete blindness in the right eye, I was almost late to a rehearsal in Baltimore. I had been waiting in line for much too long to have blood drawn for testing to help determine what might be going on. I apologized to the contractor for my almost tardiness. In professional settings, if you are not 20-30 minutes early, you are late!

Did I explain what was going on? No. I kept quiet about my struggles except to my new carpool buddy and one fellow horn player. My colleagues and students were left in the dark about my new challenges. But looking back, I must have been a mess with steroid poof, dark eyes, fatigue, bumping into things, etc.

When I talked with my friend, the horn player, she told me that her mother has lived with MS for years. Bless her heart, my friend did not tell me anything which would have scared the living daylights out of me - although I wasn’t seeing half of daylight anyhow - when she could have. She spoke with the wisdom of someone who has loved someone with MS for many years. Thank you, Jennifer.

After my vision returned, I went on with life blissfully for several years. But when I began to feel numbness and tingling in my left hand and arm, and eventually lost use of the same, I knew that my luck had run out. I had not managed to escape the grips of multiple sclerosis afterall.

Ten years ago when I was once again referred for MRI scans, I knew what they would show. I knew that this time there would be ‘white spots’ or lesions. This time the answer would be clear. It was, but that didn't prevent me from needing a spinal tab and further MRI scans. All told, it still took another five months before the news became official - You have MS.

So now that I’ve been living with MS, officially, for ten years, I try to speak with the wisdom of my friend Jennifer. It’s good to share information and support with those who are facing diagnosis and an uncertain future. It’s also good to simply offer an empathic ear to listen to the fears and concerns of others.

Even those of us who have lived with this disease for many years still do not know what the future holds for us. Right now, my future looks good. I’ve found a treatment regimen which works and keeps me functioning at a high level. I will never be able to do many of the things I once did, but that’s okay. I’m doing many other things which I never dreamed of through advocacy and outreach.

Life is different than I had dreamed and was working towards 15 years ago. But I bet that is true for anyone, regardless of disease. Life is an evolving experience and we are here to discover a path and live it to its fullest.

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Anniversary of an Early Non-Diagnosis and Living a Fulfilling Life

Wednesday, March 11, 2015

How Are You Sharing MS Awareness?

I joined more than 300 MS Activists on Capitol Hill on March 11, 2015 to lobby Congress to support increased support and funding for MS research. We also asked members of Congress to cosponsor and pass the Complex Rehabilitation Technology bill and the Neuro Data bill which is currently included in the House’s 21st Century Cures bill.

The Accelerated Cure Project for MS (ACP) is supporting MS Awareness by encouraging MS Empowerment. The iConquerMS™ research initiative empowers people with MS to participate in a new research model.

“We are witnessing the self-empowerment of those living with a particular disease to confer together,” says Robert McBurney, Ph.D., President and CEO of ACP, “to share their data singly and in the aggregate as they wish, to raise their voices collectively for a new research model in which they are truly valued, and to express their interests and concerns in partnership with the research community.”

As someone living with MS, you know the disease better than anyone — and your ideas about what researchers should explore are very valuable. As a registered member of, you can advance MS research by sharing health data and suggestions for future research topics.

I invite you to join a growing community of people with MS who are excited to be among empowered patients who will guide the future of MS research. Start by logging into your account at and go to the “Connect with Research” menu to suggest a topic for research!

Let’s continue to focus on MS Awareness and MS Empowerment during March and year round.

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MS Awareness Month: Sharing MS Online and On Capitol Hill

Monday, March 9, 2015

Meta-Study Shows MS Associated with Bone Fractures

Studies investigating the association between MS and fracture risk have been inconsistent, say authors of a new meta-analysis study. When data was pooled from nine cohort studies involving 9,229,368 subjects, researchers found the following.

  • Pooled data from nine studies confirms a significant association between MS and fracture risk (RR=1.58).
  • Subgroup analysis showed that MS is associated with increased risk of specific bone fractures: tibia (RR=2.87), femur (RR=4.87), hip (RR=3.18), pelvis (RR=1.55), vertebrae (RR=1.44), and humerus (RR=1.56).
  • No significant association was found between MS and fractures of the ribs (RR=1.14) and radius/ulna (RR=0.92). More studies with larger sample sizes are needed to address the association between MS and ribs or radius/ulna fracture risk.
  • Female MS patients had greater increased risk of fracture (RR=1.80) than male MS patients (RR=1.18). This may be explained by lower bone mass in women with MS.
  • Fracture risk is greater in people with MS who have used antidepressants, hypnotics/anxiolytics, anticonvulsants, or glucocorticoids.

Study limitations

While the results of the meta-analysis seem clear, authors suggest possible limitations in the study.

  • The retrieved literature was potentially not comprehensive enough and authors did not track unpublished articles to obtain relative data for analysis.
  • There are several factors contributing to bone fractures and potential interactions among MS-related environment and symptoms should be considered.
  • Other factors, such as age that may influence the progression of fracture, were not investigated due to limited data.
  • Severity of disease could influence fracture risk and most studies included in analysis involved MS patients with mild to moderate severity. However, it is patients with more severe disability that have more issues with walking and falling. Future studies to include information related to severity of MS (i.e. EDSS score).


It is important to be aware of the increased risk of fracture when you have MS. If you are female and have used medications shown to increase risk of fracture, including antidepressants, hypnotics/anxiolytics, anticonvulsants, or glucocorticoids, definitely be careful to avoiding falling and work to maximize bone density. Talk to your doctor to discuss what you can do to avoid and decrease risk of bone fracture.

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New Meta-Study Confirms MS Increases Fracture Risk

Sunday, March 8, 2015

Genital Problems and MS

Restless Genital Syndrome (RGS) is a rare somatosensory disorder, increasingly being recognized as a variant of Restless Legs Syndrome (RLS), that is characterized by unpleasant sensations involving the genital area and pelvis. RGS has been defined as a “spontaneous, intrusive, and unwanted genital arousal that occurs in the absence of sexual interest and desire.”3 This condition has been called by other names, such as vulvar dysesthesia or persistent genital arousal disorder.

With RGS, patients complain of a discomfort in their genital area, often described as a burning sensation, tingling, pain, itching, or throbbing. “Often [patients] say that it is difficult to find a word to describe their symptoms,” Dr. Aquino told Medscape. Symptoms tend to be worse when patients are sitting or lying down, particularly in the evening, and may be alleviated by standing and walking — very similar to typical RLS symptoms.

The cause of RGS, like RLS, is not fully understood. However several mechanisms have been proposed: reduced iron levels in the central nervous system, and abnormalities in circadian rhythm and in various neurotransmitters, such as dopamine, glutamate, and opioids. Genetics may play a role as well.

An association with Parkinson’s disease (PD) has been suggested. In a case report published in JAMA Neurology,4 a woman with PD and disabling genital discomfort was discussed. The woman described a sensation of “congestion,” itching, and “growing” of pelvic organs, symptoms that were triggered by sitting or lying down. She did not experience restlessness in her legs, but her symptoms responded well to the dopamine agonist pramipexole.

The authors concluded that RGS should be considered a phenotype of RLS, as should restless bladder and restless abdomen. They emphasized that a detailed clinical history is essential for this diagnosis and that treatment with dopamine agonists can provide some benefit.5

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Have You Heard of Restless Genital Syndrome?