Readers Write.

We want to hear from you. You can send e-mail to [e-mail], or write to Editor, National MS Society, 733 Third Avenue, New York, NY 10017-3288. Your name will be withheld if you wish.

About that increase in SGA 

There is one inaccuracy in your story on the increase in the Social Security Administration's substantial gainful activity amount (SGA). Any earnings by people receiving SSI will still reduce the amount of SSI received (after some months delay).

The program's technical requirements, if misunderstood, can lead to even more misery. Many people never understand the difference between Social Security disability insurance (SSDI), based on the worker's work record, and Supplemental Security Income (SSI). Information and pamphlets can be obtained from the Social Security Administration, 800-772-1213.

PATRICIA A. PETOW, ESQ., MASSACHUSETTS

The SGA is part of the equation in calculating both SSDI and SSI benefits. However, these benefits are calculated differently and SSI is subject to different state regulations as well. As Ms. Petow points out, it is wise to get guidelines from the Social Security Administration. Or contact your chapter (1-800-FIGHT MS, option #1).

Half empty ... or half full?

Although my MS doesn't prevent me from participating in many activities, it has taught me to adapt my way of participation. Your magazine presents the gamut of MS symptoms, issues, and levels of disabilities. I enjoy reading it, knowing "Life after MS Isn't Over, It's Just Different".

CECELIA DEVRIES, TEXAS

I find your magazine to be very depressing because it only shows people with the worst cases of MS.

I am 37 years old and was diagnosed with MS 6 years ago. I work a full-time job and 15 months ago gave birth to a beautiful healthy baby boy. I have never felt better in my life. The only symptoms I experience are numbness, tingling, fatigue, and blurry vision. I am on no medications and my symptoms have not gotten worse, and I pray they never do.

ANONYMOUS IN RHODE ISLAND 

The Medical Advisory Board of the National MS Society would nevertheless advise you to consider one of the 3 disease-modifying drugs, as MS may slumber for years and then women dramatically. See page 20.

Validation

I have often told my neurologist about how much pain I experience. It feels similar to having lead weights attached to my legs. He did not think my MS was the cause of my discomfort.

Until I saw your article on pain, I felt that no one believed my accounts. I cannot express my relief at knowing that I am not crazy and that others experience the same symptoms.

DEBORAH SHACKELTON, NEW JERSEY

Opioids, too, for MS pain

As a neurologist specializing in multiple sclerosis, I was gratified to read "When MS is Really a Pain" [Summer 1999, p. 46]. Unfortunately, many people with MS are under the mistaken impression that it should be a painless disease. About half of people with MS have significant pain.

Most physicians are reluctant to prescribe morphine or related opioids when cancer is not present. We fear intrusion by regulatory agencies, making our patients addicts, or causing adverse effects. Yet accumulating evidence suggests that patients with MS and other noncancer pain benefit from opioids without addiction, with gratifying gains in their daily activities and quality of life. I shudder to think that any patient seeks suicide because a physician is unwilling to treat pain aggressively. "Living like this makes dying easy," said one of my MS patients, who had burning leg pain.

The MS Council [of which the National MS Society is a leading member] will soon publish practice guidelines for the management of pain in MS. Hopefully these guidelines will address the appropriate use of opioids.

HERMAN J. WEINREB, MD, MEDICAL DIRECTOR, MS CARE CENTER, NEW YORK UNIVERSITY MEDICAL CENTER AND HOSPITAL FOR JOINT DISEASES

And acupuncture for pain

Even though NIH studies have shown that acupuncture treatment helps relieve pain, I saw no mention of this in your article. I was diagnosed in 1995 with primary-progressive MS. People often ask me if acupuncture helps with MS. I do pretty well.

BOB COEN, VIA E-MAIL,

Acupuncture is considered helpful as a treatment for some kinds of pain. InsideMS will publish more information about acupuncture and MS in the near future. People interested in this therapy should discuss their decision with their physician.

Doctors who listen

It saddens me that some people with MS have to go through such loops and hoops to get a definitive diagnosis. I am an RN and had been having shaky hands and extreme exhaustion. My doctor asked me what I thought.

I told him that I thought I had MS. He said that even though I was above the age that MS is normally diagnosed, he would order the MRI and get in touch with a neurologist at Yale. I learned that my diagnosis was correct a few weeks later.

I always heard about the poor care people get at the military hospitals, but if it weren't for the wonderful staff at the base hospital, I might still be waiting for a diagnosis.

LIZ KELLER, CONNECTICUT

Unexpected outcomes

Ms. Rothstein Ambler ["Let Me Tell You ... About Leaving the Express Lane", Summer 1999, p. 60] reminded me of what I went through when I was diagnosed 13 years ago. I was 41, taught at a high-powered girls prep school, and had just been named head of its Foreign Languages Department. I mourned for a long time, not liking (and even hating) the person I was going to become.

This was not only because I considered myself physically fit (played tennis daily and had two teenagers) but because looking attractive had always been important to me. Little did I suspect then that the person I was to become would inspire others with different types of limitations. One of the first things I learned was to put my life in God's hands, which was very liberating, and to explore and develop my spiritual life.

As years passed I had to wear a brace. Through a lot of creative effort, I have managed to buy fashionable shoes where I can insert the brace. I also wear long skirts and pants, which allow me to be happy about my looks. I am still teaching, hold the chairmanship of my department, and lecture all over the country. I exercise daily and enjoy my grownup children and husband immensely It was not easy at the beginning of this journey, but the self-discoveries have been very rewarding.

SILVIA G. KENNEWEG, Ohio

Alternative Therapies

"Who uses alternative therapies?" [Summer 1999, p. 40] did not mention that the lead investigator was Dr. Carolyn Shwartz. The full citation is: Shwartz CE, Laitin E, Brotman S, and LaRocca N. Utilization of unconventional treatments by persons with MS: Is it alternative or unconventional? Neurology 1999; 52:626-629.

Reader's Query

Since MS came to your life, do you notice a difference in your emotions? Your memory? In problem solving? For a special issue on MS and the Mind, we'd like to hear from readers.