Stiff-man syndrome

Stephen Hyde shyde at mail.bcpl.lib.md.us
Fri Aug 9 16:25:00 EST 1996


Scientists at the National Institute of Neurological Disorders and Stroke
(NINDS) in Bethesda, Maryland (one of the National Institutes of Health,
U.S. Dept. of Health and Human Services) are seeking patients with
stiff-man syndrome for participation in a clinical study of the
effectiveness of IVIG (intravenous immunoglobulin) as a therapeutic
intervention for this rare disease.

Stiff-man syndrome is a neurological disorder characterized by pronounced
and disabling axial and proximal limb rigidity exacerbated by anxiety,
sudden motion, or external stimuli. It often results in severe muscle
stiffness and spasms. 

For patients to be considered as candidates for this double-blind placebo
trial, they must be referred by a physician to NINDS and test positive for
the  anti-GAD antibody. Physicians may send blood samples for testing to
NINDS if previous anti-GAD testing has not been done.

For details about the study and coverage of travel-related expenses,
contact Marinos Dalakas, M.D. through: 

Jacqueline Lopez-Devine, R.N. 
Research Nurse/Coordinator
NINDS
10 Center Drive, 4N248 MCS 1382
Bethesda, MD 20892
Phone: (301) 402-4479   Fax: (301) 402-0672   E-mail: duke at helix.nih.gov  

The trial for each patient will consist of three four-day inpatient visits
(over a period of three months) to the Clinical Center at the National
Institutes of Health in Bethesda, Maryland. All hospital costs will be
covered by NIH.

---------------------.

I encouraged all persons with SMS, whether or not they take part in this
trial, to join with me as part of a correspondence support group.  I have
had this disorder since 1972, and am in touch with ten other people by
e-mail and snail-mail. Less than 150 cases of SMS have been reported in
the medical literature. Although it was identified at the Mayo Clinic in
1956, many who have it are still being misdiagnosed.



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