Frequent Urination, Leg Cramps, Leg Weakness, Erection Difficulties: HIV Myelopathy Amino Acid Study

A study at Beth Israel Medical Center in New York is recruiting men or women with HIV who also have had any two or more of the following symptoms for at least six weeks:

  • Numbness in the legs;

  • Unsteady, stiff or uncoordinated gait;

  • Urinary frequency, urgency or incontinence;

  • Erectile impairment;

  • Weakness in the legs;

  • Stiffness or spasms in the legs;

  • Fecal incontinence or retention; or

  • Electrical shock upon flexion of the neck;

These symptoms may indicate HIV myelopathy, a disease of the spinal cord which is believed to be quite common in persons with AIDS, although often not diagnosed. It has been estimated that about 10% of persons with AIDS have symptoms of HIV myelopathy, with about 30% having some evidence of the disease.

The symptoms were described in more detail in an article by the principal investigator of the current study, neurologist Alessandro Di Rocco, M.D., published by PWAC the PWA Coalition of New York in 1997:(1)

"The disease develops insidiously, and its first symptoms may not be easily recognized. It frequently starts with some difficulty in bladder control. The stimulus to urinate becomes very frequent, and is often accompanied by a sense of 'urgency' to urinate. The person with myelopathy may need to urinate every two to three hours and may need to get up from bed several times during the night to void. Another common symptom for men is difficulty in obtaining or maintaining an erection. While there are many reasons for impotence in men with AIDS, myelopathy is certainly one of the least recognized. As these initial symptoms slowly progress, stiffness in the legs may develop, often accompanied by cramps and spasms. Walking starts to become difficult, and the legs become easily tired and heavy. Later a true weakness with various degrees of paralysis may develop, and in the final stages of the myelopathy there may be a severe paralysis of the legs, with severe spasms and complete loss of control of urinary function with incontinence requiring diapers or catheters. Loss of control of the anal sphincter may also develop, with ensuing fecal incontinence. At least initially the disease is painless, although in the later stages cramps and spasms may cause serious discomfort and pain. Abnormal sensation like pins-and-needles, numbness or loss of sensation may develop in the legs, but is usually mild and tolerable."

The arms and hands are generally not affected, but the problems in the lower body slowly get worse.

The Study

There are reasons to suspect that HIV myelopathy might be due to a deficiency of the amino acid methionine. In an earlier pilot study of oral methionine, seven of the nine patients who completed the study improved; those earliest in the course of the disease did best.(2) That pilot study was not controlled, however, so it is being followed by the current eight-month trial, which will compare methionine to a placebo for three months, after which everyone will receive methionine for the remaining five months.

Volunteers must be HIV positive, at least 18 years old, and have HIV associated myelopathy, with or without neuropathy and dementia. Exclusion criteria include pregnancy or breast feeding, myelopathy due to causes other than HIV, Kaposi's sarcoma, lymphoma, or other malignancies, other experimental drugs within the last 30 days, or current alcohol or drug abuse. The study has currently recruited 44 of 50 people, so six slots are open.

For more information, or to volunteer, call Sam Chin, 212- 844-8718, or Dr. Alessandro Di Rocco, 212-844-8720.


1. Di Rocco A. AIDS-myelopathy: A common and often neglected neurologic complication of AIDS. PWAC NY Newsline, September 1997, pages 24-26.

  1. Di Rocco A, Tagliati M, Danisi F, Dorfman D, Moise J, and Simpson DM. A pilot study of L-methionine for the treatment of AIDS-associated myelopathy. Neurology July 1998; volume 51, pages 266-268.

  2. Di Rocco A and Simpson DM. AIDS-Associated Vacuolar Myelopathy. AIDS Patient Care and STDs 1998; volume 12, number 6, pages 457-461.

ISSN # 1052-4207

Copyright 2000 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.

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