Welcome Deborah/doctor in Missouri

[Guest guest]

Welcome Deborah, thanks so much for the introducing yourself.

A muscle biopsy may be something to get a 2nd opinion on. Usually " testing "

starts with an EMG/NCV, and goes from there and may or may not include DNA

genetic tests. A muscle biopsy is another diagnostic tool sometimes used to rule

out other disorders, but it can also show a good picture of nerve and muscle.

One great neurologist I know in Missouri is Florian , M.D. at Washington

University in St. Louis. I am not sure if he sees individuals as patients or is

solely focused on research and teaching. He is very well known and respected.

Here is the contact information and more about him:

Florian P. , M.D., Ph.D.

Associate Professor

Department of Neurology

Molecular Microbiology and Immunology

Molecular Virology

Saint Louis University Health Sciences Center

3635 Vista Ave. @ Grand Blvd.

St. Louis, MO 63110

(314) 577-8026

Dr. joined the faculty of St. Louis University in 1995 as Associate

Professor in the Department of Neurology. He is also an Associate Director of

the Neurology Residency Training Program. His laboratory is located in the

Institute for Molecular Virology.

Dr. is a 1982 graduate of the Rheinische Friedrich-Wilhelms University in

Bonn, Germany, where he also completed a Master's degree in Psychology and a

doctoral thesis in Microbiology. From 1983 until 1987 he trained in neurology at

Case Western Reserve University in Cleveland. During the next three years he

pursued postdoctoral training in neuroimmunology with Dr. Norman Latov at

Columbia University in New York. He then joined the Laboratory for Molecular

Biology in the Clinical Research Institute of Montreal at McGill University,

where he completed a Ph.D. degree in experimental medicine in 1995 under the

tutelage of Dr. Jolicoeur. Concomitantly he engaged in a clinical

fellowship in AIDS-Neurology at the Montreal Neurological Institute.

Dr. is board certified in neurology and a Fellow in the American Academy

of Neurology. His clinical and research interest are focused on neuromuscular

diseases, immune-mediated neurological diseases, neurogenetics and the neurology

of AIDS. He directs the multiple sclerosis and the neuromuscular disease clinics

at the St. Louis Veterans Administration Hospital and has recently started a

multiple sclerosis clinic at Saint Louis University Health Sciences Center. He

is actively involved in community service for patient support groups. He

co-founded the St. Louis chapter of The Neuropathy Association, in which he

serves as a director, and the St. Louis chapter of the Charcot-Marie-Tooth

Association in which he also serves as a member of the national medical advisory

board. He is a member of the clinical advisory committee of the Gateway Chapter

of the National Multiple Sclerosis Society.

His research focuses on multiple sclerosis, neurogenetics and HIV neurobiology:

He is the principal Investigator for the St. Louis VA Medical Center site of the

Betaseron Experience Satisfaction Trial (BEST), designed to evaluate how well an

enhanced education and support program encourages the practice of side effect

prevention and how side effect prevention impacts treatment satisfaction and

compliance. He is engaged in clinical and basic research of several families

with neuromuscular conditions and in an international effort with several

collaborators seeks to identify new disease genes through molecular genetics.

Using transgenic mouse technology he studies neurobiological properties of the

human immunodeficiency viruses.

As for in-person support groups try this for Missouri-St. Louis Area:

Place: St. Louis Univ. Medical Health Ctr.

Meeting: Quarterly

Contact: Carole Haislip, 314-644-1664

I don't know how current all this information is, but you might want to make

some calls.

Again, welcome to .

Gretchen