Fibromyalgia

As a person with fibromyalgia, I cannot understand why neurologists are not taking a more aggressive interest in it. My experience with fibro leads me to believe it a neurological problem and not something that should be treated mainly by a rheumatologist.  Please consider how the pain, fatigue, fibro fog, and other symptoms can be explained by looking at it from a neurological view.

—CC Teague
   Lenoir, NC

THE EDITOR RESPONDS: Thanks for your suggestion, CC. We took your advice (and the advice of a number of other readers who requested coverage of fibromyalgia) and published a story on it in the upcoming (Sept/Oct) issue. The issue will be mailed out to subscribers in another week or so and will be available online around the same time.

Sleep Apnea and GERD

I recently read an article in Neurology Now on sleep apnea. You did a great disservice to doctors and patients by not mentioning gastroesophageal reflux disease (GERD). My allergist says that the largest percentage of sleep apnea is caused by GERD. I’m taking two Prilosec 45 minutes before bed time and am sleeping much better.

—Ruth Messing
    Sequim, WA

Provigil for Multiple Sclerosis?

I have had multiple sclerosis (MS) for more than 30 years. In Provigil, I have finally found a medication that allows me to remain awake and alert for a full day. Others with MS who take Provigil have had the same results. I take Provigil on those days when I know I have a lot to do, and it is extremely effective. It even elevates my mood (I know, it must be the placebo effect). I wish I could take it every day, but, of course, only a doctor or pharmaceutical CEO could afford to do that. Why is the medical establishment determined to see that Provigil remains, officially, a drug just for narcolepsy sufferers when it could clearly help so many others?

 —Thomas Scherer

Still Alice Book Review

I read the review of Still Alice and, as it often occurs to me, much is made of the fact Alice was at the pinnacle of her career, a distinguished professor of psychology, etc.

I was married to a man with a pedigree like that but it is not what mattered at the end of the day. What about someone who is just a great mother or a kind and loving person? As Some people worry about their career falling apart; I worry more about whether I will be able to relate to my dear grandchildren if and when they come? Will I be able to handle a tea party on the lawn under a tree if one is a girl?  Or pull one in a wagon if he is a boy? 

Let us not lose sight of priorities in our lives, like the sweet chirp of my hummingbirds outside my windows as they pause to look in at me. I remember when I worked in Silicon Valley and would have lunch with my boss, and he would go on about his five children excelling in soccer or at the top of their class, and I would say, “Tom, I have heard so much about them, but I want to know which one is compassionate? Which one makes everyone laugh? Which one helps their Mom in kitchen or greets you at the door?” And so he did; and he heard about mine—and that is something I would like to see across the board, not just in your publication.  Thank you for the work you do. My neurologist is a wonder, and my faith, family, and friends and the hope of a heaven where there is no pain gets me through. 

—Arlene

Seizure-Alert Dogs

I am a subscriber of your magazine, and I was just featured in a new children’

s book that came out about seizure-alert dogs. My first and second service dog and I are the main story along with others and their dogs.

I thought this maybe something you might like to have for your magazine to let others know about these wonderful dogs. If you click “look in side” it is my dog and I: bearportpublishing.com/productdetails.cfm?PC=562

Or, go to bearportpublishing.com and click “Dog heroes” on the left, then scroll to the book on seizure-alert dogs.

Jewl Wall, Texas

An Ounce of Prevention: Eating Right for Parkinson’s

I was intrigued by your request for personal accounts of an “Ounce of Prevention.” I would like to express my own experience with Parkinson’s disease (PD). I was diagnosed with PD in 2005 at the age of 53. I read everything available on the disease during the first two years of the disease. It was then that I discovered that there was no research being done on nutrition for PD. Thus, I began a comprehensive study of how the body works to prevent and fight disease. In 2007 I was walking with a cane. I was unable to eat because my hands shook so badly that I could not keep my food on my fork. All that has changed since I learned how to properly fuel my body with wholesome and nutritious foods and exercise.

Some may snicker at the following, but an ancient description of what is food and what is not can be found in the Bible under Leviticus chapter 11. Our ancestors knew something about food that has been forgotten over the millennia. Nevertheless, it works for me. Furthermore, the denatured and adulterated food found in most supermarkets contains possibly harmful chemicals not truly meant for human consumption.

Now I eat only whole foods and grains from markets that supply organic and pesticide-free foods. I also look for a Kosher hecture on food labels, although it does not ensure the quality of foods in some cases. Today I no longer walk with a cane, my hands no longer shake, and the progression of the disease appears to have improved. My neurologist seems puzzled by this, but is unwilling to admit that proper nutrition and exercise alone can be a possible treatment for neurological disease.

I owe my deepest gratitude to my friend Johanne who encouraged me to rethink and alter my nutritional standards. I hope that this short note may be encouraging to others who may be facing severe neurological challenges.

—Michael Hinz

ADHD: Neurofeedback

In my readings I have recently come across what I consider a promising therapy for ADHD. Jim Robbins, in his book, A Symphony in the Brain, makes numerous references to the positive results of brain wave training (or neurofeedback training). He described a study by Dr. Mario Beauregard which found “a significant difference in children with ADHD who had brainwave training and those who did not.” The study concluded, “there is mounting evidence that neurofeedback training can significantly improve cognitive functioning in ADHD children.”

Dr. Daniel G. Amen, in his book, Change your Brain, Change your Life, writes, “Medication is the cornerstone of the ‘biological’ treatments for ADD, but it is not the only biological treatment. Over the past fifteen years, researchers including Joel Lubar, Ph.D., of the University of Tennessee, have demonstrated the effectiveness of a powerful adjunctive tool in the treatment of ADD and other prefrontal cortex problems: brain-wave or EEG biofeedback”

I did a quick search of the Neurology Now archives and could only find an article by Dr. Lawrence Brown, (May/June 2007). He stated, “Most other alternative approaches should be avoided because they remain untested or unproven. These include…. biofeedback.”

While the National Institutes of Health is apparently reluctant to fund a large-scale study on EEG biofeedback/brainwave training, and consequently none has been done, surely there is sufficient anecdotal evidence to devote an article to this promising therapy.

—John Lenihan

Post-Surgery Pain

My husband has been left in disabling pain by our HMO and has been unable to work for two years. He had a “simple” umbilical hernia surgery. Immediately after, the severe, genitofemoral neurological pain began. For three years doctors have dismissed symptoms and delivered misdiagnosis, excuses, delays, deferrals, rejections, and now abandonment.  

Last September two surgeons finally tried to relieve the genitofemoral nerve pain by dividing the nerve, but instead the surgeons severed a testicular artery—creating agonizing pain—and now claim further intervention isn’t “medically indicated.”

No doctor wants to step up and help. My husband will be forced into retirement and left in disabling pain, which dictates bed rest for 16-22 hours daily. Sitting down is impossible. 

We seek and appreciate any assistance. The HMO “internal resolution” (grievance) process is tedious, futile and permits HMO stalling tactics. He will see any urologist, neurologist, neurosurgeon or hernia (tension-free) surgeon who offers help instead of another misdiagnosis. There must be a doctor that knows how to help us.

—Ronald and Glenda Muschetto
    Shingle Springs, CA

Ministering with Multiple Sclerosis

I was diagnosed with multiple sclerosis (MS) in the early 1980s, before MRIs, and that was an experience. I am an ordained minister with my doctorate in Pastoral Care and Counseling. Before I was diagnosed with MS, I had worked on the neurology floor of both Cornell-Weil Hospital in New York, NY, and Memorial Sloane Kettering Hospital, also in New York City. One of the first patients I had was a man who had a scooter and was in for a flare up of MS. In my ignorance at that time I called his scooter a “Go Cart,” and I don’t know how I would have felt about that if I had been him at the time. We talked a lot about what was happening with him, and I did some research then on MS, though not nearly as much known as now. I also worked with many other patients in a variety of settings and was very interested in the ways our bodies function to both alert us to what is happening and to repair damaged organs or bones. 

Your magazine opens doors to new places and helps me understand better what is going on. Because of my chaplaincy training and my ministry in the parish, I have never stopped learning or seeking medical information for myself and for others whom I have seen in hospitals. I have been given a wonderful gift to be able to relate to people in a special way, and that has been nurtured by continued research on my own about different medical conditions. 

Unfortunately right now I have been out on disability for quite a while after I left my last church, first because of my MS, then hip surgery, and then bilateral knee surgery. But I do believe there is still a place for me to help and give to others, and in due time I will find the right way.

—Reverend Dr. Marcia J. Graham

Myalgic Encephalomyelitis

Please list the only two accurate Web sites for myalgic encephalomyelitis, which is an acute, infectious neurological disease.

• The Hummingbirds Foundation for ME: hfme.org
• The Nightingale Research Foundation: and nightingale.ca

—C. Strafford