Page 413

Index

A


ABLEDATA, 206
Activities of daily living, 200, 201, 202, 205, 215
see also

Assistive technology
Acupuncture/acupressure, 410
Acute disseminated encephalomyelitis, 84, 85, 86
Acute MS, 30, 278, 395
see also

Relapses
Adrenocorticotropic hormone, 290
African Americans, 77, 79, 227, 340-341
Age factors, 17
see also

Children
brain and spinal cord atrophy, 35
children, disease processes, 29
disease process, 29
gender and, 77-78
geographic location and, 77
neuroplasticity, 250
pain, 161
quality of life, 195
Agency for Health Research and Quality, 343-344
AIDS, 87, 220-221, 308
Allergens, 405, 409
Allied health professionals, 11, 190, 362
see also

Exercise and physical therapy
Alpha-fetoprotein, 409-410
Alphasal, 409
Alprostadil, 159
Alternative medicine, 226-229, 405-412 (passim)
acupuncture/acupressure, 410
marijuana, 163, 228-229
Alzheimer's disease, 1, 5, 22, 118, 256, 269, 316, 328, 329, 330, 351
Amantadine, 119, 154
American Academy of Neurology, 47, 184
Americans with Disabilities Act, 188, 193
Amino acids, 82
autoimmune diseases other than MS, 69
baclofen, 132-133, 165, 289
beta-interferon, 49
GABA (gama-aminobutyric acid), 69, 132, 133, 134, 248, 288
glatiramer acetate, 20, 49, 50-52 (passim), 75, 82, 92, 277, 290, 298, 360, 361, 389
N-acetyl aspartate (NAA), 38, 39-40, 64
oligodendrocyte destruction, 350-351
Theiler's murine encephalomyelitis virus (TMEV), 97


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Page 413 Index A ABLEDATA, 206 Activities of daily living, 200, 201, 202, 205, 215 see also Assistive technology Acupuncture/acupressure, 410 Acute disseminated encephalomyelitis, 84, 85, 86 Acute MS, 30, 278, 395 see also Relapses Adrenocorticotropic hormone, 290 African Americans, 77, 79, 227, 340-341 Age factors, 17 see also Children brain and spinal cord atrophy, 35 children, disease processes, 29 disease process, 29 gender and, 77-78 geographic location and, 77 neuroplasticity, 250 pain, 161 quality of life, 195 Agency for Health Research and Quality, 343-344 AIDS, 87, 220-221, 308 Allergens, 405, 409 Allied health professionals, 11, 190, 362 see also Exercise and physical therapy Alpha-fetoprotein, 409-410 Alphasal, 409 Alprostadil, 159 Alternative medicine, 226-229, 405-412 (passim) acupuncture/acupressure, 410 marijuana, 163, 228-229 Alzheimer's disease, 1, 5, 22, 118, 256, 269, 316, 328, 329, 330, 351 Amantadine, 119, 154 American Academy of Neurology, 47, 184 Americans with Disabilities Act, 188, 193 Amino acids, 82 autoimmune diseases other than MS, 69 baclofen, 132-133, 165, 289 beta-interferon, 49 GABA (gama-aminobutyric acid), 69, 132, 133, 134, 248, 288 glatiramer acetate, 20, 49, 50-52 (passim), 75, 82, 92, 277, 290, 298, 360, 361, 389 N-acetyl aspartate (NAA), 38, 39-40, 64 oligodendrocyte destruction, 350-351 Theiler's murine encephalomyelitis virus (TMEV), 97

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Page 414 AMPA/kainate receptors, 243, 244, 287, 290 Amputation, 247, 250 Amytrophic lateral sclerosis (ALS), 13, 14, 115, 330, 339, 365 treatment, 283, 285, 286, 287, 289, 300, 305, 366, 367 Anergix, 394 Animal models, ix , 84, 90-104, 396 bone marrow transplants, 296 brain, 96, 103 encephalomyelitis, 7, 43, 72-73, 84-86, 99; see also Experimental autoimmune encephalomyelitis (EAE) demylenation, 7, 91-99 (passim), 102-103, 357 immune system, general, 7, 21, 48, 91, 97, 103 magnetic resonance imaging, 262 major histocompatibility complex (MHC), 91, 103 neurons, 6, 7, 95 remyelination, 243-244 research recommendations, 4, 6-7, 356-358 spasticity, 131 T cells, autoreactive, 251-252, 355 tolerance strategies, 21 transgenic, 91, 93, 97, 100-104, 280, 355, 356-357 transplantation, 292 viruses, 21, 91, 357-358 mouse hepatitis virus (MHV), 95, 98-100 Theiler's murine encephalomyelitis virus (TMEV), 48, 91, 92, 95-98, 99, 269, 357 Antegren, 294 Antibiotics, 407 Antibodies, 42, 68, 255, 349, 350, 394, 410 see also Antigens; Immunoglobulins; Vaccines autoantibodies, 66, 73, 74, 92, 93, 251, 255, 266, 355 neutralizing, beta-interferon, 51, 52, 97 T cells, antigen-specific, 60, 70, 93, 252-253, 254, 257-258, 260, 263-265, 279, 280, 354, 355, 397 Antigens, 60, 68, 263 see also Major histocompatibility complex astrocytes, 244-245, 350 autoantigens, 5-6, 7, 42, 44, 45, 50, 60, 66, 67, 71-74 (passim), 82, 88, 91, 93, 100, 244, 251-255, 257, 279, 280, 354, 355, 357, 398 superantigens, 67, 92, 93, 95, 254 cerebrospinal fluid (CSF), 42, 45 neutralizing antibodies, 51, 52, 97 Anxiety, 122, 123, 152, 200, 211, 217, 224 see also Depression side effects of treatment, 50, 125, 126, 127, 135, 388 treatment, 227, 229 Apoptosis, 7, 98, 243, 254, 255, 259, 269, 281, 284-285, 286, 287, 295, 351, 358-359, 392 Arthritis, 14, 44, 69, 122, 145, 152, 153, 297, 299, 328, 329, 337, 366 Asians, 48, 77, 79, 83, 85, 87 Assistive technology, ix , 199, 205-210, 385-386 catheterization, 143, 206 cognitive impairment, 119, 209 cost and cost-effectiveness, 205, 206, 207, 210 defined, 205 employment, 193, 207-208 environmental control technology, 206, 207 health screening, 222-223 insurance coverage, 206, 209, 222 wheelchairs, 128, 188, 199, 206-207, 209, 220, 222, 386 Astrocytes, 3, 4 antigens, 244-245, 350 biological features of MS, 45, 62, 64, 71, 87 blood-brain barrier, 257 cytokines, 257, 258, 259, 350 disease mechanism research, 241, 245, 253, 257, 258, 259, 267 glial scars, 3, 241, 350 inflammation, 258 research recommendations, 241, 244-245, 253, 257, 258, 259, 267, 349, 350 treatment, 282, 284, 286, 294 Asymptomatic MS, 6, 30, 35-36, 88, 115, 177 Ataxia and tremor, 128, 138-140, 163 assistive technologies, 209 employment and, 191 experimental autoimmune encephalomyelitis (EAE) vs MS, 92

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Page 415 measurement, 201 patient perspectives, 188 relapses, 32 Social Security Administration disability criteria, 401, 402 treatment, 138-140 as side effect, 125, 135, 139 Atrophy, 35, 38, 39, 122, 278, 356 Attention, 118, 154, 200, 403 Autoantigens, 6, 66, 67, 71-74 (passim), 91, 93, 100, 251-255, 257, 279, 280, 354, 355, 357, 398 Autogenous vaccine, 409 Autoimmunity, see Immune response Autologous Blood and Marrow Transplant Registry of North America, 313, 314-315 Autopsies asymptomatic MS, 30 axonal damage and demyelination, 64 brain banks, 316-318, 332, 339 tissue banks, other, 365 Avonex, see Beta-interferon Axons, 3, 7, 20 see also Demyelination; Myelin; Remyelination; Synapses animal models, 95 atrophy, 35, 38, 39 autopsies, 64 degeneration, 58-59, 64, 92, 241-243, 244, 251, 266-267, 278, 280-281, 283, 291, 349, 350, 356 cognitive impairment, 118 electrical impulse conduction, 20, 56, 57, 58, 65, 242, 247, 255, 349, 350 inflammation, 242, 280-281 N-acetyl aspartate, 38, 39-40, 64 magnetic resonance imaging, 35, 38, 39-41, 241 pain, 163 physiology, 54-65, 246; see also “electrical...” supra plasticity, 58, 65, 245, 246-247, 249-251, 291, 349 research recommendations, 65-70, 241-243, 244, 246-247, 249-251, 255, 266-267, 278, 349, 350 secondary progressive MS, 30 T1-weighted hypointense lesions, density measurements, 40 treatment, 243, 278, 280-281, 283, 288, 289, 291, 358 weakness, 136 Azathioprine, 390 B B cells, 6, 395 animal models, 91 autoreactive/demyelinating, 6, 60, 68, 70, 71, 74, 93, 251, 253, 255, 355 cerebrospinal fluid (CSF), 42, 74, 265-266 cloning, 42, 93 biomarkers, 265-266 experimental autoimmune encephalomyelitis (EAE), 93 B lymphocytes, see B cells Back pain, 145, 160, 165 Baclofen, 132-133, 165, 289 Bacteria, 15, 67, 78, 283, 366 Barthel Index, 198, 200, 205, 215 Beck Depression Inventory, 121, 122 Bee venom, 408 Behavioral factors see also Functional status; Patient perspectives patient adherence to therapy, 51-52 measurement, 197 modification therapy, 123, 153 Social Security Administration disability criteria, 403 Bentyl, 144-145 Benzodiazapines, 133, 165 Beta-interferon, 35, 48-51, 60, 277, 284, 298, 307, 361, 392 animal studies, 92 Avonex/Rebif, 49, 50, 388, 396 Betaseron, 49, 51, 53, 388 cognitive impairment, 119 depression, 52, 123, 126-127 neutralizing antibodies, 51, 52, 97 side effects of, 49, 52, 123, 126-127, 388 Biological markers, 42, 44-45, 262-267, 308, 366-367 B cells, 265-266 cerebrospinal fluid (CSF), 30, 41-42 clinical studies, 261, 262 cytokine production, 259, 263-264 demyelination, 44, 45 disease subtypes, 261, 262-267

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Page 416 fatigue, 155 immune response, general, 42, 44, 45, 47, 263-266 oligoclonal bands, 42, 44, 46, 74, 87, 90, 164, 260, 266, 354 Biotechnology, 280, 289 see also Stem cell therapy private sector, 341-343 transgenic animals, 91, 93, 97, 100-104, 280, 355, 356-357 Black holes, see T1-weighted hypointense lesions Bladder and bowel dysfunction, ix, 124, 140-148 back pain, 165 catheterization, 143, 206 constipation, 125, 135, 140, 145, 146, 147, 154 diarrhea, 125, 135, 145, 154 measurement, 198, 199, 201, 202 relapses, 32, 34 research recommendations 143, 147 spasticity and, 142, 143, 144 treatment, 140, 142-145, 146-147, 400 as side effect, 135, 145, 154 Blood-brain barrier clinical factors, 37, 38, 45 depression, 126 disease mechanisms, 60, 63, 67, 70, 75, 76, 245, 257-258, 263 imaging, 37, 38, 356 research recommendations, 18, 350 treatment, 278, 288 Bone marrow transplants, 294, 296-298, 313, 314, 339 see also Stem cell therapy Botox, 134-135 Botulism A toxin, 133, 134, 149 Bowel dysfunction, see Bladder and bowel dysfunction Brain, vii , ix , 26, 283-284, 285, 350, 409 see also Alzheimer's disease; Blood-brain barrier; Brain stem; Cerebellum; Cerebral cortex; Cerebrospinal fluid; Cerebrum; Imaging technology; Parkinson's disease; Thalamus AMPA/kainate receptors, 243, 244, 287, 290 animal studies, 96, 103 encephalomyelitis, 7, 43, 72-73, 84-86, 99; see also Experimental autoimmune encephalomyelitis asymptomatic MS, 35, 36 atrophy, 35, 38, 39, 122, 278, 356 banks, 316-318, 332, 339 depression, 122 employment and, 191 fatigue, 152-153, 155 hippocampus, 249, 293 laughing and crying, 119 N-acetyl aspartate, whole-brain, 39 optic neuritis, 148 self-repair mechanisms, 2, 26 spasticity, 129, 130 stroke, 115, 120-121, 130, 162, 200, 287, 291 surgery, 132, 134, 139-140, 147, 411, 412 T cells, brain-specific, 60, 70, 93, 252-253, 254, 257-258, 260-261, 263-265, 279, 280, 354, 355, 397 weakness, 130 Brain stem, 31, 34, 48, 201 evoked potentials, 47 lesions, general, 30 sexual dysfunction, 157 spasticity, 130 T1-weighted hypointense lesions, 40 weakness, 130 British Society of Rehabilitation Medicine, 217-218 C Calcium, 45, 69, 134, 249, 253, 267, 288, 349, 407 Cambridge Multiple Sclerosis Basic Score, 202 Canaboids, see Marijuana Canada, 221, 339 CaP CURE, 13, 333, 339, 340, 345, 346, 365 Capsaicin, 144-145 Catheterization, 143, 206 Caucasians, 77, 82, 83-84

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Page 417 Cellular processes, vii, 1, 3, 4, 241 see also Astrocytes; Axons; B cells; Cytokines; Genetic factors; Glia; Immune response; Inflammation; Lesions; Macrophages; Myelin; Neurons; Oligodendrocytes; Stem cell therapy; T cells; Transplantation apoptosis, 7, 98, 243, 254, 255, 259, 269, 281, 284-285, 286, 287, 295, 351, 358-359, 392 endothelial cells, 245, 257, 258, 265, 287, 391 research recommendations, 3, 4, 6, 7-8, 348, 349, 356 Centers for Disease Control and Prevention, 367 Cephalon, 395 Cerebellum, 48, 201 ataxia and tremor, 128 biological markers, 30, 41-42 evoked potentials, 45 lesions, general, 30 relapses, 32, 34 spasticity, 130 T1-weighted hypointense lesions, 40 Cerebral cortex, 401 cognitive impairment, 119 depression, 122 evoked potentials, 47 neuropasticity, 247-249, 250 Cerebrospinal fluid (CSF), 41-42, 43, 44, 397, 401 B cells, 42, 74, 265-266 chlamydia, 90 clinically isolated syndromes, 30, 278 diagnosis, 30, 41-42 herpes virus, 89 oligoclonal bands, 42, 44, 46, 74, 87, 90, 164, 260, 266, 354 tissue banks, 215, 316 T cells, 252, 265 Cerebrum, 32, 401 magnetic resonance imaging, 115 symptoms due to abnormalities, 115 T1-weighted hypointense lesions, 40 Chelation therapy, 410 Chemokines, 62, 75, 76, 82, 83, 258, 264, 265, 266, 270, 350 Chemotherapy, 360 Children disease process, 29 patient relations with, 187 Chinese medicine, traditional, 229, 410 Chlamydia, 90 2-Chlorodeoxyadenosine, 390 Cholorazone, 409 Ciliary neurotrophic factor, 45, 285 Cladribine, 395 Clinical studies and trials, 8-9, 30, 277-278, 298-312, 340-341, 393, 395, 396, 398 amytrophic lateral sclerosis (ALS), 283, 285, 289 animal studies vs , 90 ataxia and tremor, 138-140, 163 biological markers, 261, 262 bladder and bowel dysfunction, 143 cognitive impairment, 120 cost and cost-effectiveness, 8-9, 303-304, 365 databases, 261, 312-315, 339, 361 depression, 123-126, 127 disease subtypes, 261, 262 fatigue, 153, 155 functional status and quality of life, 194, 306 funding, 9, 50, 298, 300, 306, 310, 341 headache, 164 immunomodulatory agents, 48, 50-51, 52 individual patient care, 9-10 magnetic resonance imaging (MRI), 277, 278, 304, 306, 307, 308, 309-311 marijuana, 229 measurement instruments, 203, 204 neuroplasticity, 247-248 optic neuritis, 148-149, 247-248 outcome measures, 194, 195 pain, 160, 162, 163, 165-166 primary prophylasis, 277 progressive MS, altering, 278 racial/ethnic factors, 340-341 rehabilitation, 213, 214-216 relapse prevention, 277, 290-291 research recommendations, 4, 8-10, 24, 277-278, 352, 353, 359-361 standards, 20 stem cell therapy, 300-301 workshop agendas, 381 Clonazepam, 133, 134

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Page 418 Cloning, 6, 93, 100, 356-357 B cells, 42, 93 T cells, 94, 252, 254, 264, 355 transgenic animals, 91, 93, 97, 100-104, 280, 355, 356-357 Cognitive impairment, 30, 115-120 assistive technologies, 119, 209 asymptomatic MS, 35 clinician attitudes toward, 116 depression and, 118, 122, 123 emotional impairment vs, 116, 119-120 employment, 115-116, 191, 404 functional MRI (fMRI), 41 language skills, 117, 118 laughing and crying, 118-119 memory, 116-117, 119, 122, 178, 200, 209 magnetization transfer imaging and, 40 measurement, 40, 117, 119, 120, 198-202 (passim), 204-205 rehabilitation, 212 relapses, 32 research recommendations, 119-120 Social Security Administration disability criteria, 402 treatment, 123 Communication, 191, 198, 201, 206, 216-221, 386 see also Language skills; Patient education aids, 208-209 diagnosis, 12, 17, 179-180, 216-219 Internet, 12, 206, 208-209, 218, 221 physicians and other caregivers, 10, 25, 216-219, 223, 318, 363, 381 Computer applications see also Databases/registries assistive technology, 208, 209 ataxia and tremor, 138 bladder dysfunction, 143 cognitive impairment, 119 general information dissemination, 12 Internet, 12, 206, 208-209, 218, 221 Confidentiality, 361 Constipation, 125, 135, 140, 145, 146, 147, 154 Coordination loss, see Ataxia and tremor Copaxone, see Glatiramer acetate Cost and cost-effectiveness factors assistive technology, 205, 206, 207, 210 clinical trials, 8-9, 303-304, 365 erroneous research claims, 15, 306 health care modes, 210-211 quality-adjusted life years (QALYs), 53-54 transgenic animal studies, 101 treatment, 52, 53-54, 210-211 Cramps, see Muscle spasms and cramps Crying, see Langhing and crying Cyclophosphamide, 390 Cylert, 154 Cytokines, 21, 42, 44, 60, 62, 64, 68, 74-76, 257-260, 264-265, 355 see also Beta-interferon; Tumor necrosis factor astrocytes, 257, 258, 259, 350 biomarkers, 259, 263-264 glia, 75, 76, 87 immune-based therapy, 259-260, 278-279, 281, 282, 285, 289, 290, 391, 392, 397 inflammatory/anti-inflammatory, 21, 75, 76, 87, 242, 257, 258, 259-260, 281, 391, 392 interleukin, 49, 60, 61, 103, 258, 259-260, 264-265, 392, 397, 398 neuropoietic, 74, 285 oligodendrocytes, 75, 259 transforming growth factor (T.F.), 60, 114, 258, 259, 265, 282, 285, 391 transgenic animal models, 102, 103 treatment, 259-260, 278-279, 281, 282, 285, 289, 290, 391, 392, 397 Cytospaz, 144-145 D Daclizumab, 397 Dantrium/Dantrolene, 133, 134-135, 165 Databases/registries, 345 see also Internet brain banks, 316-318, 332, 339 clinical data, general, 261, 312-315, 339, 361 confidentiality, 361 health status assessment, 361-362 genomic, 352 pharmaceuticals, 394-399 tissue banks, 215, 316-318, 332, 339, 365 transplant, 312-315, 345 DDAVP, 144-145 Decadron, 150 Deltasone, 150

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Page 419 Demographic factors, 222, 269, 352 see also Educational attainment; Gender factors; Geographic factors; Race/ethnicity rural areas, 188, 344 urban areas, 188 Demyelinating disorders, general, 84-87, 166, 243, 380 Demyelination, 3, 5-6, 8, 18, 19, 20, 56-62, 64, 65, 241-245, 283, 291 see also Beta-interferon; Interferon; Oligodendrocytes; Remyelination animal models, 7, 91-99 (passim), 102-103, 357 astrocytes, 245 asymptomatic MS, 35 ataxia and tremor, 138 atrophy, 39 B cells, 6, 60, 68, 70, 71, 74, 93, 251, 253, 255, 355 biomarkers of MS, 44, 45 cognitive impairment, 118 dietary deficiency, 84 diffusion tensor imaging (DTI), 6, 41, 64, 356 electrical impulse conduction, 20, 56, 57, 58, 65, 242, 278 evoked potentials, 43-44 experimental autoimmune encephalomyelitis (EAE), 7, 92 eye movements, 149 funding for research, 22 immune system, general, 4, 5-6, 65-76 infectious agents, 7, 88, 89, 90, 91 magnetic resonance imaging (MRI), 41 molecular plasticity of axons, 246-247, 349 myelin basic protein, 5-6, 42, 44, 50, 60, 66, 71, 72-73, 82, 257, 354, 389, 398 oligodendrocytes, 7-8 optic nerve, 115 pain, 163, 166 patient diagnosis information, 218 research recommendations, 268-269, 349, 354-355 spasticity, 130 T cells, 6, 21, 42, 66-76, 82, 86, 92, 93, 98, 99, 244, 251-257, 263, 279-280, 354, 355, 388, 389, 395, 397, 398 animal models, 251-252, 355 suppressor cells, 17, 50, 73, 78, 257, 279-280 treatments, 49, 50, 257, 279-280, 303, 388, 389, 390, 391, 395, 397, 398 see also Major histocompatibility complex toxins, 84 virus-induced, 7, 88, 89, 90, 91, 95-98, 99-100, 357-358 Theiler's murine encephalomyelitis virus (TMEV), 48, 91, 92, 95, 96, 99, 269, 357 Dental therapy, 15, 367, 411-412 Department of Defense, 314 Deporpanex, 408 Depression, ix, 120-128 see also Anxiety beta-interferon, 52, 123, 126-127 cognitive impairment and, 118, 122, 123 crying, 118-119 exercise and, 224 fatigue and, 153, 155 interferon therapy, 52 measurement, 121-122, 200, 202 sexual dysfunction and, 156 spousal attitudes, 186 suicide, 122-123, 388 treatment, 123-128, 153, 400 as side effect, 123, 125-127, 135, 150, 154, 388 Desipramine, 123 Deskar, 395 Desmopressin, 144-145 Detrol, 144-145 Dexamethasone, 150 Diabetes mellitus, 280, 328, 353 Diagnosis, 3, 42-48, 216-217, 357 see also Autopsies; Biological markers; Imaging technology; Symptoms atrophy, 39, 356 cerebrospinal fluid (CSF), 30, 41-42 cognitive impairment, 116, 120 criteria, 43, 46, 47-48, 50, 66, 121, 127, 217-218, 349, 401-404 depression, 121 disease subtype identification, 261-262 electromyocardiogram, 138 evoked potentials, 42, 43-47, 56, 148, 157 Expanded Disability Status Scale, 40, 117-118, 121, 157, 178, 201, 202, 204-205, 212-213, 214, 304, 306, 385-386

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Page 420 fatigue, 152-153 immune status, 257 patient perspectives, 12, 17, 179-180, 216-219 relapses, 32, 33, 34 research recommendations, 348, 349 Social Security Administration disability criteria, 401-404 weakness, 138 Diarrhea, 125, 135, 145, 154 Diazepam, 133 Dicyclomine hydrochloride, 144-145 Diet, 77, 84, 225-226, 386, 405-407 bowel dysfunction, 146-147 protein, 147, 225 vitamins, 225, 406, 409 Differential sequence analysis, 5, 260, 353, 354 Diffusion tensor imaging (DTI), 6, 41, 64, 356 Diffusion-weighted magnetic resonance imaging, 38, 40-41 Dimethyl sulfoxide, 409 Disability, see Americans with Disabilities Act; Expanded Disability Status Scale (EDSS) Disability and Impact Profile, 198 Discrimination, 188 Disease management and measurement, viii, 2, 4, 8, 177-276, 304-305 see also Assistive technology; Diagnosis; Exercise and physical therapy, Functional status; Imaging technology; Pain and pain management; Patient perspectives; Quality of life; Rehabilitation; Side effects of treatment; Symptoms; Treatment ataxia and tremor, 138-140 bladder and bowel dysfunction, 198, 199, 201, 202 cognitive impairment, 40, 117, 119, 120, 198-202 (passim), 204-205 depression, 121-122, 197, 198, 200, 202 Expanded Disability Status Scale, 40, 117-118, 121, 157, 178, 201, 202, 204-205, 211, 212-213, 214, 304, 306, 385-386 experimental autoimmune encephalomyelitis (EAE), 137, 163, 225-226 family factors, 197, 198, 199 children, relations with, 187 spouses, 185, 186 fatigue, 152-155, 197, 198, 199, 202 rehabilitation, 211, 212-216 research recommendations, 4, 8, 9-10, 189-190 social factors, measurement, 197, 198, 200, 202, 204 standards, 261, 363, 382, 401-404 visual impairment measurement, 198-203 (passim) walking difficulties, measurement, 199, 201, 204, 385-386 Disease markers, see Biological markers Disease mechanisms, 54-90, 177-178, 351 see also Etiology and pathology astrocytes, 241, 245, 253, 257, 258, 259, 267 bladder dysfunction, 142, 145 blood-brain barrier, 60, 63, 67, 70, 75, 76, 245, 257-258, 263 experimental autoimmune encephalomyelitis (EAE), 72, 74, 84, 86, 91-94, 102, 103 major histocompatibility complex, 61, 68, 76, 80-82, 83, 244, 251, 252, 256, 257, 260-261, 264, 268 research recommendations, 241-277, 348 spasticity, 130-132 tumor necrosis factor (TNF), 258, 259, 260, 264-265, 266, 268 Disease variants, 360, 363 see also Primary progressive MS; Progressive MS; Relapsing-remitting MS; Secondary progressive MS asymptomatic MS, 6, 30, 35-36, 88, 115, 177 biological markers, 261, 262-267 magnetic resonance imaging, 261-262 monogenetic MS, 5, 269, 351 Ditropan XL, 144-145 Dizziness, 115, 125, 135, 145, 150, 154, 400 DNA, 316, 352 see also Genomics autoantigens, 253 B cells, 74 infectious agents, 260 magnetic resonance imaging (MRI), 268

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Page 421 microarrays, 256-257, 265, 269-271, 316, 354, 355 polymerase chain reaction, 5, 260, 265, 353, 354, 355 treatments, 50, 257 transgenic animals, 91, 93, 97, 100-104, 280, 355, 356-357 vaccines, 279 Dorsal column, 162, 248, 410-411 Drug treatment, see Pharmaceuticals Dysesthetic pain, 162-163, 165, 166, 250, 400 E EAE, see Experimental autoimmune encephalomyelitis Economic factors, see Cost and cost-effectiveness factors; Employment; Funding; Socioeconomic status EDSS, see Expanded Disability Status Scale Education, see Information dissemination; Patient education; Professional education Educational attainment, patients, 189, 190, 191, 192, 199, 219, 221 Electromyocardiogram, 138 Electrophysiology, general, 8, 306 axons and myelin, general, 54-65, 246 electrical impulse conduction, 20, 56, 57, 58, 65, 242, 247, 255, 349, 350 dorsal column stimulation, 410-411 evoked potentials, 42, 43-47, 56, 130, 148, 157 weakness, 136 Elavil, 124-125 Eliprodil, 392, 393 Emotional impairment, 116, 119, 181-182, 183, 211 see also Anxiety; Depression assistive technology, 206-207 cognitive impairment vs, 116, 119-120 diagnosis, emotional response, 17, 179-180 exercise and, 224 laughing and crying, 118-119 measurement, 197, 198, 200, 202 rehabilitation, 215 side effect of treatment, 123, 125-127, 135, 150, 154, 388 Employment, 9, 14, 177, 178, 190-193, 197, 202 assistive technology, 193, 207-208 bladder and bowl dysfunction, 140 cognitive impairment, 115-116, 191, 404 depression, 122 fatigue, 191, 193, 205 gender factors, 191 researchers, 334-336 Social Security Administration disability criteria, 404 Encephalomyelitis, 7, 43, 72-73, 84-86, 99 see also Experimental autoimmune encephalomyelitis acute disseminated encephalomyelitis, 84, 85, 86 postinfectious encephalomyelitis, 86, 99 transverse myelitis, 30 Endothelial cells, 245, 257, 258, 265, 287, 391 Enolase, 42, 45 Environmental control technology, 206, 207 Environmental factors in causation, 67, 77, 78, 352 familial, 79 geographic, 76-77 toxins, 15, 84, 85 Environmental Status Scale, 202 Enzyme-linked immunosorbent assay, 265 Epidemiology, vii, 76-79, 190, 312, 352 see also Demographic factors; Incidence and prevalence functioning and quality of life studies, 10, 11, 362 infections, 77, 78-79, 86 Epilepsy, 1, 22 , 328 Ethnicity, see Race/ethnicity Ethylenediamine tetraacetic acid, 410 Etiology and pathogenesis, 8, 54-76 see also Animal models; Clinical studies and trials; Demyelination; Diseases mechanisms; Immune response; Infections; Pain and pain management; Viruses committee task, 25, 26 erroneous research claims, 15, 306-367 infections, general, 33, 67, 78-79, 84, 85, 86, 87-90, 150, 252, 260-261 laughing and crying, 119 newly proposed pathogens, 14-15 research management, 14-15

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Page 422 research recommendations, 3, 4, 5-6, 14-15, 348-358, 361-362, 366-367 spasticity, 129-130 Europe, 17, 390, 392, 393 beta-interferon, 49, 51 Internet, 221 magnetic resonance imaging (MRI), 308 major histocompatibility complex, 82 Netherlands, brain bank, 317-318, 339 United Kingdom, 23-24, 217-218, 317-318, 329, 339 Evoked potentials, 42, 43-47, 56, 130, 148, 157 Executive function, 116 Exercise and physical therapy, 215-216, 224-225 acupressure/qigong, 410 back pain, 165 coping skills, 182 insurance coverage, 221-222 neuroplasticity, 291-292 posture, 128, 132, 138, 139, 192, 208 quality of life, 196 research recommendations, 8, 190 spasticity, 131 stress and, 184-185 Expanded Disability Status Scale (EDSS), 40, 201, 202, 204-205, 211, 304, 306, 385-386 cognitive impairment, 117-118 depression, 121 outline of, 385-386 quality of life, 178 rehabilitation, 212-213, 214 sexual dysfunction, 157 Experimental autoimmune encephalomyelitis (EAE) disease management and measurement, 137, 163, 225-226 disease mechanisms, 72, 74, 84, 86, 91-94, 102, 103 inflammation, 93-94 research strategies, 252, 253, 254-255, 257, 258, 260, 263, 268, 269, 270-271, 278, 357 symptom characterization and management, 137, 163 treatment, 280, 285, 286, 288, 395 Eye pathologies, see Optical pathologies F Family factors, 178, 185-187, 190, 210, 362 assistive technology, 206 children, relations with, 187 cognitive impairments, 116 depression, 127 diagnosis, 217 genetic, 9, 11, 79, 80, 83 measurement, 197, 198, 199 monogenetic MS, 5, 269, 351 research recommendations, 351, 352 spouses, 185, 186 Fampridine, 394 Fatigue, viii, ix, 17, 149-155, 178 see also Weakness assistive technology, 207 clinician attitudes toward, 116 cognitive impairment and, 118 defined, 151 depression and, 121, 122 employment and, 191, 193, 205 functional MRI (fMRI), 41 measurement, 152-155, 197, 198, 199, 202 Social Security Administration disability criteria, 402 treatment, 153-154, 155, 400 as side effect, 125, 135, 145, 154 Federal government see also Legislation; National Institutes of Health Agency for Health Research and Quality, 343-344 Centers for Disease Control and Prevention, 367 Department of Defense, 314 National Center for Infectious Diseases, 367 National Institute on Disability and Rehabilitation Research, 206 Social Security Administration, 193, 401-404 Females, see Gender factors Fluoxetine hydrochloride, 153 Food and Drug Administration, 49(n), 300, 308, 343, 381, 395 Orphan Drug Act, 49(n), 342-343, 396, 399 Foreign countries, see International perspectives

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Page 423 Functional Assessment of Multiple Sclerosis, 198 Functional Independence Measure (FIM), 200, 205, 211, 305 Functional magnetic resonance imaging (fMRI), 6, 38, 41, 166 Functional status, 2, 20 see also Assistive technology; Exercise and physical therapy; Expanded Disability Status Scale; Impairment; Quality of life; Rehabilitation activities of daily living, 200, 201, 202, 205, 215 defined, 199-200 epidemiology, 10, 11, 362 insurance coverage, 222 longitudinal studies, 10, 361 measurement, 177, 193-194, 196, 197, 198, 199-205 Expanded Disability Status Scale (EDSS), 40, 121, 157, 178, 201, 202, 204-205, 211, 212-213, 214, 304, 385-386 Functional Assessment of Multiple Sclerosis, 198 Functional Independence Measure (FIM), 200, 205, 211, 305 Impairment Scale for the European Database for Multiple Sclerosis, 202 Incapacity Status Scale, 201-202 Minimal Record of Disability, 201, 202 Multiple Depression Inventory, 121 Multiple Sclerosis Functional Composite Scale (MSFC), 201, 203, 304, 306, 362 Multiple Sclerosis Impact Scale, 198 Multiple Sclerosis Quality-of-Life Inventory, 198 Sickness Impact Profile, 197, 198 standards, 194, 363 neuroplasticity, 246, 250 patient perspectives, 17, 179, 180, 194-195 remission, 246 research recommendations, 8, 10-11, 362-363 Social Security Administration disability criteria, 401 standards, 194, 363 workshop agendas, 382 Functional System Scales, 201 Funding, 325-333, 345, 362-363 assistive technology, 206 bone marrow transplant registries, 314 brain banks, 316, 317 clinical trials, 9, 50, 298, 300, 306, 310, 341 genetics and genomics, 268-269, 352 interdisciplinary research, 13, 365 MS Society, viii, 22, 23-24, 326-327, 329, 332, 338-339, 343-344, 362-363 NIH, vii, 22, 23, 314-315, 316, 325, 327, 332, 334 personal and social issues, 11 research centers, 322-333 researchers, 334-335, 364 G GABA (gama-aminobutyric acid), 69, 132, 133, 134, 248, 288 Gabapentin, 134, 165 Gadolinium, 30, 37, 38-39, 46, 277, 305, 306, 356 Ganglionectomy, 411 Gay and lesbian populations, 156 Gender factors see also Sexual dysfunction age and, 77-78 autoimmune disease, general, 23, 67 employment, 191 experimental autoimmune encephalomyelitis (EAE) vs MS, 92 gay and lesbian populations, 156 hysterectomy, 412 incidence and prevalence, vii-viii, 17, 67, 77-78 menstrual cycles, 49, 353 MS Society-funded research, 23 pain, 158 pregnancy/postpartum period, 78, 409-410 prevalence, vii-viii, 17, 67, 77-78 research recommendations, 270, 353 roles, 185, 191-192 spousal, 185, 186, 191-192 suicide, 122-123 Gene therapy, 1, 4, 5, 6, 25, 102, 283, 286, 289, 345, 355, 357, 380 see also Beta-interferon; Stem cell therapy

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Page 428 M Macrophages, 45, 60, 64, 67, 71, 74, 75, 98, 99, 103, 251, 253, 254, 263, 287, 392, 398 Magnesium, 407 Magnetic resonance imaging (MRI), 43, 396, 398 animal models, 262 axonal degeneration, 35, 38, 39-41, 241 asymptomatic MS, 35 brain banks, 317 cerebrum, 115 clinical trials, 277, 278, 304, 306, 307, 308, 309-311 clinically isolated syndromes, 30 cognitive impairment, 118, 119, 120 cytokine production as biomarker and, 259 demyelination, 41 diagnostic criteria, 43 diffusion-weighted MRI, 38, 40-41 disease subtype identification, 261-262 evoked potentials vs 47 functional MRI (fMRI), 6, 38, 41, 166 gadolinium-enhancing, 30, 37, 38-39, 46, 277, 305, 306, 356 high-field-strength MRI, 38, 41 immunomodulatory agents, effectiveness, 48, 50, 51 magnetic resonance spectroscopy (MRS), 6, 38, 39-40, 356 N-acetyl aspartate, 38, 39-40 pain, 163 patient perspectives, 180 relapsing-remitting MS, 37, 39 research recommendations, 261-262, 265, 267-268, 305, 307, 308, 309-311, 356 technical principles, 36, 38-41 (passim) Magnetic transfer imaging (MTI), 6, 40, 64, 356 Magnetotherapy, 411 Major histocompatibility complex (MHC/HLA) disease mechanisms, 61, 68, 76, 80-82, 83, 244, 251, 252, 256, 257, 260-261, 264, 268 animal models, 91, 103 racial/ethnic factors, 82, 83-84 research recommendations, 244, 251, 252, 256, 257, 260-261, 264, 268, 297, 351-352 treatment, 297, 351, 390, 391, 394 Mandelamine, 144-145 Marijuana, 163, 228-229 Marital partners, see Spouses Medicaid, 222-223 Medical Outcomes Study, 197, 199, 200 Medicare, 222 Memory, 116-117, 119, 122, 178, 200, 209 Men, see Gender factors Menstrual cycles, 49, 353 Mental change, see Cognitive impairment Mental health, ix see also Anxiety; Depression; Emotional impairment; Psychological factors; Stress adaptation, 2, 9-12, 26, 177, 180-190, 193, 206, 207-208, 212-213, 218, 219, 221 patient attitude toward own, 115 rehabilitation, 212-213 Social Security Administration disability criteria, 403-404 suicide, 122-123, 388 Metabolic therapy, 407 Metalloproteins, 42, 45, 258, 265, 269, 392, 397 Methenamine infection, 144-145 Methotrexate, 390, 392 Methylprednisolone, 148, 150, 278 MHC, see Major histocompatibility complex Microglia, 64, 96, 97, 102, 103, 251, 258, 293, 294 Minimal Record of Disability, 201, 202 Mitoxantrone, 47, 50, 51, 390, 395 Mobility control technology, 206-207 wheelchairs, 128, 188, 199, 206-207, 209, 220, 222, 386 Modafinil, 154 Molecular biology, general, 6, 7 see also Amino acids; Biotechnology; Genetic factors; Genomics; Proteins axon plasticity, 246-247 demyelination, 65, 246-247 hyperexcitability, 8, 131, 166, 248, 359 neuronal plasticity, 245-246 research recommendations, 3, 6, 7, 8, 65, 278-279, 348, 349, 356

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Page 429 Monoamines spasticity, 130, 131, 132, 133 weakness, 135, 137, 138 Monogenetic MS, 5, 269, 351 Mouse hepatitis virus (MHV), 95, 98-100 MRI, see Magnetic resonance imaging MS Quality-of-Life-54, 199 MSP-771, 398 Multidisciplinary approach, see Interdisciplinary approach Multiple Depression Inventory, 121 Multiple Sclerosis Functional Composite Scale (MSFC), 201, 203, 304, 306, 362 Multiple Sclerosis Impact Scale, 198 Multiple Sclerosis Quality-of-Life Inventory, 198 Muscle spasms and cramps, 69, 135, 144, 145, 161, 163, 164-165 see also Spasticity; Weakness Muse, 159 Mutations, 6, 79, 80 B cells, 74 chemokine receptors, 82 cystic fibrosis, 6 T cells, 264 transgenic animals, 91, 93, 97, 100-104, 280, 355, 356-357 viruses, 97, 253 Myelin, 3, 5-6, 8, 18, 19, 20 see also Demyelinating diseases, general; Demylenation; Oligodendrocytes; Remyelination gene products, autoimmune agents, 21 myelin basic protein, 5-6, 42, 44, 50, 60, 66, 71, 72-73, 82, 257, 354, 389, 398 see also Glatiramer acetate MOG (myelin oligodendrocyte glycoprotein), 73, 74, 93, 253, 255 oral, 392 physiology, 54-65, 242, 349 research recommendations, 65-70, 349 signs and symptoms of MS, 115 spasticity, 131 Myotrophin, 395 N N-acetyl aspartate, 38, 39-40, 64 National Center for Infectious Diseases, 367 National Institutes of Health brain banks, 316 funding, vii, 22, 23, 314-315, 316, 325, 327, 332, 334 researchers, 334, 335, 337 National Institute on Disability and Rehabilitation Research, 206 National Multiple Sclerosis Society, viii, 1, 2, 14, 15, 19, 23, 26, 348 beta-interferon, 50 brain banks, 316 clinical trials, 9, 50, 298, 300, 306, 310 cognitive impairment, 116 committee task statement, 25, 347 diagnostic criteria, 43, 50 everyday living, 11 functional measurement instruments, 201, 203, 306 funding, viii, 22, 23, 326-327, 329, 332, 338-339, 343-344, 362-363 research centers, 322 researchers, 335-336, 338-339 National Rehabilitation Information Center, 206 Nausea and vomiting, 49, 125, 135, 145, 150, 154, 159 Neopterin, 45 Nerve growth factor (NGF), 284, 285, 286 Netherlands, brain bank, 317-318, 339 Neurelan, 394 Neurofilaments, 45 Neurons, vii, 1, 3, 4, 8, 21, 75, 241, 244, 255-256 see also Apoptosis; Axons; Demyelination; Glia; Oligodendrocytes; Remyelination; Synapses animal models, 6, 7, 95 bladder and bowel dysfunction, 143 cerebrospinal fluid (CSF), 41 enolase, 42, 45 hyperexcitibility, 8, 131, 166, 248, 359 lesions, 3, 6, 241-243 N-acetyl aspartate, 38, 39-40, 64 pain, 163 plasticity, 64, 147, 245-251, 291-292 repair, 3, 4, 21, 143 research recommendations, 3, 4, 6, 7-8, 147, 243, 349, 350, 356 spasticity, 130, 131, 133, 163 treatment, 281, 283, 287, 392 weakness, 136, 137, 138

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Page 430 Neurontin, 134-135 Neuropathic pain, 161-163 Neuroprotection strategies, 1, 58, 241-272 (passim), 305, 392, 397 see also Vaccines research recommendations, 4, 7-8, 278, 280-290, 305, 358-359 workshop agendas, 381 Neurotrophins and neurotrophic factors, 45, 64, 74, 75, 250, 257, 259 treatment, 282-287 (passim), 292, 350 Neutralizing antibodies, 51, 52, 97 Nitric oxide, 48, 259, 279, 287 N-methyl aspartate (NMDA), 248, 249, 287, 292 Norepinephrine, 124, 130, 136-137 Nottingham Health Profile, 197 Novantrone, see Mitoxantrone Numbness and tingling, 32, 115 Nutrition, see Diet Nystatin, 407 O Octacosanol, 408 Oligoclonal bands, 42, 44, 46, 74, 87, 90, 164, 260, 266, 354 Oligodendrocytes, 3, 4, 8, 55, 60, 62, 64, 65, 73 see also Myelin amino acids, 350-351 cytokines, 75, 259 infectious agents, 88, 93, 99 immune response, general, 8, 65, 73, 253, 254, 359 myelin oligodendrocyte glycoprotein (MOG), 73, 74, 93, 253, 255 research recommendations, 241, 243-244, 253, 254, 266, 278, 349-351 toxins, 84 transgenic animal models, 102 treatment, 278, 282, 283, 284-285, 286, 287, 290, 294, 358-359, 393, 395 Optical pathologies, 148-149 see also Visual impairments neurotrophins, 285 Optic neuritis, 30, 32, 34, 48, 85, 148-149, 150, 160, 164, 247-248, 400 Orotein/Orgotein, 408 Orphan Drug Act, 49(n), 342-343, 396, 399 Oxybutynin Chloride, 144 P Paclitaxel (Taxol), 390, 396 Pain and pain management, viii, ix, 158, 159-166, 178, 388, 389 back pain, 145, 160, 165 clinical studies, 160, 162, 163, 165-166 clinician attitudes toward, 116 demyelination, 163, 166 depression and, 122 dysaesthesia, 162-163, 165, 166, 250, 400 functional MRI (fMRI), 41 genetic factors, 162-163 headaches, 125, 135, 145, 150, 154, 159, 160, 164, 165 incidence and prevalence, 158, 161, 165 inflammation, 160, 165, 166 marijuana, 229 measurement instruments, 197, 199, 200, 203 muscle spasms and cramps, 69, 135, 144, 145, 161, 163, 164-165 neuropathic, 161-163 optic neuritis, 148, 160, 164 paraesthesia, 8, 135, 250, 400 patient attitude toward, 115, 197, 199 pharmaceuticals, 8, 133, 138-139, 161-169 (passim), 359 radicular pain, 163 research recommendations, 4, 8, 165-166, 350 spasticity, 129, 133, 135, 161-162, 163, 164-165 treatment, 8, 133, 160, 161-166 (passim), 359 Painful tonic spasms, 160, 161-162, 165 Palosein, 408 Pamelor, 124-125 Pancorphen, 408 Pancreas, 69, 408 see also Diabetes mellitus; Insulin Papaverine, 159 Paraesthesia, 8, 135, 250, 400 Parkinson's disease, 1, 5, 14, 22, 328, 329 research recommendations, 269, 342, 343, 351, 366 symptoms, 120, 139 treatment, 139, 285, 287, 289, 292, 305 Pathogenesis, see Animal models; Etiology and pathogenesis

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Page 431 Patient education, 51, 127, 138, 156, 206, 210, 212, 216-221, 318, 363, 383 diagnosis, 12, 17, 179-180, 216-219 Patient perspectives, viii, 2, 17, 20, 25, 26, 177, 178-190, 194-195 see also Employment; Functional status; Psychological factors; Quality of life; Social factors adherence to therapy, 51-52 assistive technology, 205-207 confidentiality, 361 diagnosis, 12, 17, 179-180, 216-219 discrimination, 188 educational attainment, 189, 190, 191, 192, 199, 219, 221, 383 impairments, attitudes toward, 115 informed consent, 51-52 magnetic resonance imaging, 180 measurement instruments, 197, 198, 200 pain, 115, 197, 199 rehabilitation, 212-213 research recommendations, 9-11, 189-190, 362, 363 support groups, 210 symptoms, description by, 115 unpredictability/uncertainty, 9, 156, 177, 179, 180, 182, 193, 218, 220, 240, 348, 363 Pavabid, 159 Paxil, 124-125 Pemoline, 153 Peripheral nervous system, 69, 281 Pharmaceuticals, 1, 20, 347, 387-400, 406-410 see also Beta-interferon; Clinical studies and trials; Immune-based therapy; Interferon; Neuroprotective strategies; Side effects of treatment; Stem cell therapy; Transplantation; specific agents amytrophic lateral sclerosis (ALS), 283, 285, 286, 287, 289, 300, 305, 366, 367 anti-inflammatory agents, 20, 49, 76, 148-149, 165, 281, 286, 388, 391, 392, 395, 400; see also Beta-interferon; Interferon anxiety, 227, 229 approved medications, tabular list, 388-389 astrocytes, 282, 284, 286, 294 ataxia and tremor, 138-139 axonal function, 243, 278, 280-281, 283, 288, 289, 291, 358 bladder and bowel dysfunction, 140, 142-145, 146-147, 400 blood-brain barrier, 278, 288 chemotherapy, 360 cognitive impairment, 119, 123 cytokines, 278-279, 281, 282, 285, 289, 290, 391, 392, 397 databases, 394-399 depression, 121, 123-128, 153, 400 eye movements, 149, 150 fatigue, 153-154, 155, 400 glatiramer acetate, 20, 49, 50-52 (passim), 75, 82, 92, 277, 290, 298, 360, 361, 389 glia, 281, 284, 285, 286, 290, 293, 294, 392 Internet, 221 major histocompatibility complex, 297, 351, 390, 391, 394 marijuana, 163, 228-229 neurons, 281, 283, 287, 392 oligodendrocytes, 278, 282, 283, 284-285, 286, 287, 290, 294, 358-359, 393, 395 optic neuritis, 148-149, 150 pain and sensory disturbance management, 8, 133, 138-139, 161-169 (passim), 359 patient perspectives, 180 adherence to therapy, 51-52 polymorphisms, 272, 352 private sector, 341-343 relapse limiting, 278 remyelination, 65, 281-283, 286, 306, 358, 359, 393 research recommendations, 4, 8-9, 278, 299, 341-343, 347, 348, 353, 359-360 sexual dysfunction, 158, 159, 400 sodium channels, 7, 288, 291, 358, 407 spasticity, 130, 132-135, 164-165, 289, 400 tumor necrosis factor (TNF), 281, 284, 286, 395 weakness, 132, 133, 137 workshop agendas, 380, 381 Photon emission computer tomography, 155

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Page 432 Physical therapy, see Exercise and physical therapy Physicians MS Society-funded research, 23 patient relations, 10, 179, 223-224 Pirfenidone, 392, 395 Policy issues, 2 see also Cost and cost-effectiveness factors; Funding; Research management assistive technologies, 210 Polymerase chain reaction (PCR), 5, 260, 265, 353, 354, 355 Polymorphisms, 80, 82, 269, 272, 352-353 Positron emission tomography (PET), 6, 120, 356 Postinfectious encephalomyelitis, 86, 99 Posture, 128, 132, 138, 139, 192, 208 Potassium channels, 56-58, 147, 246, 394 Prednisome, 150 Pregnancy/postpartum period, 78, 409-410 Prevalence, see Incidence and prevalence Primary progressive MS, 35, 310 diagnostic criteria, 43 N-acetyl aspartate, 39 relapses, 32, 34 Privacy, see Confidentiality Pro-Banthine, 144-145 Procaine hydrochloride, 409 Professional education, 10, 25, 209, 210, 338 MS Society of Great Britain and Northern Ireland, 23-24 researchers, 12-13, 332-333, 338, 364 researchers, recruitment, 334-338, 364 Prognosis, 308, 351 Devic's pattern, 48 life expectancy, 29, 223 quality-adjusted life years (QALYs), 53-54 progressive MS, 35 relapse features, 34 Progressive MS, 202 accumulated deficit, 29, 31 altering, 278 cognitive impairment, 117 disease progression, 31 immunomodulatory agents, 48, 394, 397 prevalence, 34 relapses, 32 see also Primary progressive MS; Secondary progressive MS Progressive multifocal leukoencephalopathy, 86-87 Promazine hydrochloride, 407 Proneut, 409 Propantheline bromide, 144-145 Prostin VR, 159 Proteins, 56, 265, 278, 282, 397 see also Cytokines; Ion channels; Neurotrophins and neurotrophic factors; Potassium channels; Sodium channels autoantigens, 6, 71, 253, 354 biomarkers, 42, 45 cerebrospinal fluid (CSF), 42, 44 experimental autoimmune encephalomyelitis (EAE), 254, 255 myelin proteins, 5-6, 42, 44, 50, 60, 66, 71, 72-73, 82, 257, 354, 389, 398 transgene, 7 superantigens, 67, 92, 93, 95, 254 bowel dysfunction, 147 diet, 147, 225 genetic predisposition to MS, 67 major histocompatibility complex, 252, 257 metalloprotiens, 42, 45, 258, 265, 269, 392, 397 myelin basic protein, 5-6, 42, 44, 50, 60, 66, 71, 72-73, 82, 257, 354, 389, 398 proteomics, 256 transgenic animal models, 101, 102 Proteolytic enzymes, 410 Protocols, see Standards Provigil, 154 Prozac, 124-125, 154 Psychological factors, 178-186, 363 see also Anxiety; Depression; Mental health; Patient perspectives; Stress asymptomatic MS, 35 employment, 191-192 sexual dysfunction, 155, 156 unpredictability/uncertainty, 9, 156, 177, 179, 180, 182, 193, 218, 220, 240, 348, 363 Psychosocial factors, see Social factors Pyridoxine, 139

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Page 433 Q Quality-adjusted life years (QALYs), 53-54 Quality of life, 9, 20, 115, 165, 183, 204, 211, 327, 353-361, 383 see also Disease management and measurement; Functional status; Health status assessment; Impairment; Pain and pain management; Patient perspectives; Rehabilitation; Symptoms assistive technology, 209 clinical studies, 194, 306 cognitive impairment, 120 epidemiological studies, 10, 11, 362 information communication to patient, 219 interdisciplinary research, 14, 365-366 longitudinal studies, 10, 361 measurement, 177-178, 193-199, 203, 220 rehabilitation, 212-213 standards, 194, 363 workshop agendas, 382 Qigong, 410 R Race/ethnicity, 76, 77, 78, 79, 83, 269, 352-353 African Americans, 77, 79, 227, 340-341 alternative medicine, 227 Asians, 48, 77, 79, 83, 86, 87 Caucasians, 77, 82, 83-84 clinical trials, 340-341 major histocompatibility complex, 82, 83-84 optic and spinal MS, 48 Radicular pain, 163 Ranvier nodes, 55-57 Rebif, see Beta-interferon Recreation and leisure, 209 Registries, see Databases/registries REHABDATA, 206 Rehabilitation, 210, 211, 212-216, 382, 383 see also Assistive technology; Exercise and physical therapy Rehabilitation Act, 188 Relapses, 30, 31-35, 202, 290-291 acute disseminated encephalomyelitis, 86 assistive technology, 205 atrophy, 35, 39 clinical studies on prevention, 277, 290-291 depression, 123 diagnosis, 32, 33, 34 immunomodulatory treatments, 50, 51-52, 277-278 intervals between, 33, 34 T2-weighted hyperintense lesions, 39 unpredictability/uncertainty, 9, 156, 177, 179, 180, 182, 193, 218, 220, 240, 348, 363 Relapsing-remitting MS, 30, 303, 310 accumulated deficit, 29, 31 acute attacks, 32 cognitive impairment, 117 disease progression, 31 experimental autoimmune encephalomyelitis (EAE) vs MS, 92, 93-94 imaging technology, 37, 40 inflammatory demyelination, 62 immunomodulatory agents, 48 lesions, 30, 37, 57 magnetization transfer imaging and, 40 N-acetyl aspartate, 39 prevalence, 30 T2-weighted hyperintense lesions, 39 Remissions, 290-291 functional recovery, 246 magnetic resonance imaging (MRI), 38 sodium channels, 246-247 Remyelination, 3, 58, 64, 65, 246, 349, 350 see also Demylenation beta-interferon, 49 bladder and bowel dysfunction, 143 funding for research, 22 oligodendrocytes, 243-244 treatment, 65, 281-283, 286, 306, 358, 359, 393 Representational difference analysis, 5, 260, 353, 354 Research management, 12-15, 22-24, 325-346, 347-348, 362-367 see also Clinical studies and trials; Databases/registries; Funding erroneous research claims, 15, 306-367 interdisciplinary research, 13-14, 332-333, 364-367 Researchers, 333-339, 344, 362 physician-scientists, 338, 345 recruitment, 334-338, 364 training, 13-14, 332-333, 338

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Page 434 Riluzole, 287, 392 Risk factors see also Diet; Demographic factors; Environmental factors in causation; Epidemiology; Gender factors; Geographic factors; Infections; Race/ethnicity genetic, general, 17, 18, 76-77, 79-84, 380 suicide, 123 workshop agendas, 380 Riutek, 396 RNA, 101, 256, 265, 270-271, 316, 367 Robert Wood Johnson Foundation, 178 Rodilemid, 409 Roquinimex, 392 Rural areas, 188, 344 S S-100 protein, 45 Secondary progressive MS, 30, 310, 304 disease progression, 31, 35 magnetization transfer imaging and, 40 N-acetyl aspartate, 39 relapses, 32 T2-weighted hyperintense lesions, 39 Seizures, 69, 87, 89, 176, 400 Semliki forest virus, 95 Sensory impairment, 201, 359 see also Numbness and tingling; Pain and pain management; Visual impairments employment and, 193 evoked potentials, 42, 43-47, 56, 148, 157 functional MRI (fMRI), 41 relapse indicators, 34 relapsing-remitting MS, 33 sexual dysfunction, 156, 157 treatment, 4, 8 Sequence screening, 5, 260, 353 Serotonin, 124, 127, 136-137, 154 Sexual dysfunction, ix, 155-158, 197 depression and, 121, 125 measurement, 198, 199, 202 relapses, 32 research recommendations, 156 treatment, 158, 159, 400 as side effect of, 125, 145, 154, 156, 159 SF-36, 196-197, 198, 199, 200 Sickness Impact Profile, 197, 198 Side effects of treatment, 289-290, 361, 392, 408 anxiety, 50, 125, 126, 127, 135, 388 approved medications, tabular list, 388-389 ataxia and tremor, 125, 135, 139 beta-interferon, 49, 52, 123, 126-127, 388 bladder and bowel dysfunction, 135, 145, 154 depression/emotional impairment, 123, 125-127, 135, 150, 154, 388 fatigue, 125, 135, 145, 154 immunomodulatory agents, 48-52 (passim) T-cell therapies, 49 nausea and vomiting, 49, 125, 135, 145, 150, 154, 159 optic neuritis and abnormal eye movements, 150 sexual dysfunction, 125, 145, 154, 156, 159 spasticity, 135 visual impairments, 145 Sildenafil citrate, 159 Snake venom, 408 Social factors, ix, 2, 178, 180-183, 185-190, 191 see also Employment; Family factors assistive technology, 205, 210 bladder and bowl dysfunction, 140 depression, 121, 127 disability defined, 203-204 disease management, 177 measurement, 197, 198, 200, 202, 204 rehabilitation, 212-213 research recommendations, 9, 10, 11, 14 support groups, 210 Social Security Administration, 193, 401-404 Society of Neuroscience, 13 Socioeconomic status, 191, 193 see also Employment Sodium channels, 56-57, 58, 65 astrocytes, 350 disease mechanisms, 242, 245, 246-247 remissions, 246-247 research recommendations, 7, 349, 350 symptoms and symptom management, 130, 147, 162-163 treatment, 7, 288, 291, 358, 407 Solu-Medrol, 150 Sparine, 407

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Page 435 Spasms, see Muscle spasms and cramps Spasticity, ix, 87, 128-135 bladder dysfunction and, 142, 143, 144 defined, 128 employment and, 191 marijuana, 228 neurons, 130, 131, 133, 163 pain, 129, 133, 135, 161-162, 163, 164-165 research recommendations, 133 spinal cord, 129, 130, 131-133 Theiler's murine encephalomyelitis virus (TMEV), 95-96 treatment, 130, 132-135, 164-165, 289, 400 Spatial perception, 116 Speech, see Language skills Spinal cord, 20, 26, 32, 35-36, 48, 96, 278 see also Cerebrospinal fluid asymptomatic MS, 35, 115 atrophy, 35, 38, 39 bladder and bowel dysfunction, 143 depression, 122 dorsal column, 162, 248, 410-411 evoked potentials, 45, 47 imaging technology, 1, 35-36, 43, 356 neuroplasticity, 248 race/ethnicity, 48 sexual dysfunction, 157 spasticity, 129, 130, 131-133 surgical spinal cord relaxation, 411 T1-weighted hypointense lesions, 40 traumatic injury, 65, 130, 131, 137, 147, 162, 228 vertebra, 35, 143, 146, 176, 411 weakness, 136-137, 138 Spouses, 185, 186, 191-192 Standards brain and tissue banks, 316, 318 clinical care, 261, 363, 382 clinical trials, 20, 298, 299, 300, 303, 306-312, 359-360 diagnosis, informing patients, 217-218 diagnostic criteria, 43, 46, 47-48, 50, 66, 121, 127, 349, 401-404 functional status and quality of life, 194, 363 health care referrals, 363 neurological disability, 261 Social Security Administration disability criteria, 401-404 T-cell biomarkers, 264 St. John's wort, 406-407 State law, 188 Stem cell therapy, 1, 20, 243, 358 bone marrow transplants, 294, 296-298, 313, 314, 339 clinical studies, 300-301 research recommendations, 4, 8, 65, 292-298, 300, 332, 357, 359 transgenic animal models, 101 Steroids, 148-149, 290 Stress, 181-182, 184-185, 198, 199, 215, 220 see also Anxiety; Depression unpredictability/uncertainty, 9, 156, 177, 179, 180, 182, 193, 216, 217, 218, 220, 240, 348, 363 Stroke, 115, 120-121, 130, 162, 200, 287, 291 Subclinical MS, see Asymptomatic MS Suicide, 122-123, 388 Superantigens, 67, 92, 93, 95, 254 Superoxide dimutase, 408 Support groups, 210 Surgery, 132, 134, 147, 302, 318, 410-412 amputation, 247, 250 ataxia and tremor, 139-140 Symmetrel, 154 Sympathectomy, 411 Symptoms, 2, 7, 26, 32, 43, 115-177, 198, 201, 281, 348 see also Ataxia and tremor; Bladder and bowel dysfunction; Cognitive impairment; Depression; Emotional impairment; Fatigue; Impairment; Nausea and vomiting; Pain and pain management; Seizures; Sensory impairment; Spasticity; Weakness asymptomatic MS, 6, 30, 35-36, 88, 115, 177 experimental autoimmune encephalomyelitis (EAE) vs MS, 92, 137, 163 management, 4, 8, 115-166, 359 monosymptomatic MS, 43, 277, 278 Parkinson's disease, 120, 139 patient perspectives, 17, 179, 220 sodium channels, 130, 147, 162-163 Synapses, 69, 71, 242, 249, 291 bowel dysfunction, 146 spasticity, 130-135 (passim) weakness, 136, 137

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Page 436 T T cells, 44, 76, 244 antigen-specific, 60, 70, 93, 252-253, 254, 257-258, 260-261, 263-265, 279, 280, 354, 355, 397 autoreactive, 6, 21, 42, 66-76, 82, 86, 92, 93, 98, 244, 251-257, 263, 279-280, 354, 355, 388, 389, 395, 397, 398 animal models, 251-252, 355 suppressor cells, 17, 50, 73, 78, 257, 279-280 see also Major histocompatibility complex ; ”treatments” infra biological markers, 263-265 brain-specific, 254, 257, 260-261 cerebrospinal fluid, 252, 265 cloning, 94, 252, 254, 264, 355 human T-lymphocyte virus (HTLV), 85, 87, 99 infection, 252 inflammation, 6, 67, 69, 71-76 (passim), 95, 253, 255, 257, 258, 264, 268, 355, 391, 398 mutation, 264 receptors, 81, 82, 86 research recommendations, 6, 254, 350, 354, 355 superantigens, 67, 92, 93, 95, 254 treatments, 49, 50, 257, 279-280, 303, 388, 389, 390, 391, 395, 397, 398 vaccines, 279 Taxol (Paclitaxel), 390, 396 Technology-Related Assistance for Individuals With Disabilities Act, 188 Thalamus ataxia and tremor, 139-140 evoked potentials, 47 neuroplasticity, 248 thalamotomy/thalamic stimulation, 411 Thalidomide, 397 THC, see Marijuana Theiler's murine encephalomyelitis virus (TMEV), 48, 91, 92, 95-98, 99, 269, 357 Therapies, see Treatment Tingling, see Numbness and tingling Tissue banks, 215, 316-318, 332, 339, 365 Tizanidine (Zanaflex), 130, 132-133, 134-135 TM27, 397 Tofranil, 124, 144-145 Tolterodine tartrate, 144-145 Toxins, 15, 84, 85 botulism A, 133, 134, 149 nitric oxide, 279 venom, 408 Transcutaneous nerve stimulation, 411 Transforming growth factor (T.F.), 60, 114, 258, 259, 265, 282, 285, 391 Transgenic animals, 91, 93, 97, 100-104, 280, 355, 356-357 Transmission-disequilibrium tests, 269, 352 Transplantation, 45, 80, 267, 280, 281, 283, 289, 292-298, 302, 305 see also Major histocompatibility complex; Stem cell therapy bone marrow, 294, 296-298, 313, 314, 339 glia, 29 registries, 312-315, 345 workshop agendas, 381 Transverse myelitis, 30 Treatment, 4, 20, 48-54, 277-324, 387-400, 405-412 see also Assistive technology; Beta-interferon; Clinical studies and trials; Exercise and physical therapy; Gene therapy; Glatiramer acetate; Immune-based therapy; Interferon; Neuroprotection strategies; Pharmaceuticals; Rehabilitation; Remyelination; Side effects of treatment; Surgery; Transplantation amytrophic lateral sclerosis (ALS), 283, 285, 286, 287, 289, 300, 305, 366, 367 animal models, 103 anxiety, 227, 229 astrocytes, 282, 284, 286, 294 ataxia and tremor, 138-140 axonal function, 243, 278, 280-281, 283, 288, 289, 291, 358 bladder and bowel dysfunction, 140, 142-145, 146-147, 400 blood-brain barrier, 278, 288 cognitive impairment, 119, 123 committee task statement, 25 cost and cost-effectiveness, 52, 53-54, 210-211 assistive technology, 205, 206, 207, 210

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Page 437 cytokines, 278-279, 281, 282, 285, 289, 290, 391, 392, 397 dental therapy, 15, 367, 411-412 depression, 121, 123-128, 153, 400 DNA, 50, 257 evoked potentials, evaluation of, 45 experimental autoimmune encephalomyelitis (EAE), 280, 285, 286, 288, 395 eye movements, 149, 150 family caregivers, 186-187 fatigue, 153-154, 155, 400 glia, 281, 284, 285, 286, 290, 293, 294, 392 historical perspectives, 21 hypnosis, 229 major histocompatibility complex, 297, 351, 390, 391, 394 metabolic therapy, 407 neurons, 281, 283, 287, 392 oligodendrocytes, 278, 282, 283, 284-285, 286, 287, 290, 294, 358-359, 393, 395 optic neuritis, 148-149, 150 pain, 8, 133, 160, 161-166 (passim), 359 Parkinson's disease, 139, 285, 287, 289, 292, 305 patient perspectives, 180 polymorphisms, 272, 352 remyelination, 65, 281-283, 286, 306, 358, 359, 393 research recommendations, 4, 8-9, 278, 299, 341-343, 347, 348, 351, 358-361 sexual dysfunction, 158, 159, 400 sodium channels, 7, 288, 291, 358, 407 spasticity, 130, 132-135, 164-165, 289, 400 symptom-specific therapies, 2 T cells, 49, 50, 257, 279-280, 303, 388, 389, 390, 391, 395, 397, 398 tumor necrosis factor (TNF), 281, 284, 286, 395 ultrasound, 411 weakness, 132, 133, 137 workshop agendas, 380, 381 Tremor, see Ataxia and tremor Trigeminal neuralgia, 161 T1-weighted hypointense lesions (black holes), 35, 38, 40, 41, 61, 310, 356 T2-weighted hyperintense lesions, 38, 39, 40, 46, 310 Tumor necrosis factor (TNF) biological features of MS, 60, 75, 92, 103 disease mechanism research, 258, 259, 260, 264-265, 266, 268 treatment strategies, 281, 284, 286, 395 Twin studies, 79 U Ultrasound, 411 United Kingdom, 23-24, 217-218, 317-318, 329, 339 Urban areas, 188 V Vaccines acute disseminated encephalomyelitis, 84 MS, 279, 280, 390, 397, 409 Variants of MS, see Disease variants Venom, 408 Vertebra, 35, 143, 146, 176 surgery, 411 Viagra, 159 Viruses, 15, 70, 77, 78-79, 85, 86-87, 89-90, 95-100, 357 AIDS, 87, 220-221, 308 animal models, 21, 91, 357-358 mouse hepatitis virus (MHV), 95, 98-100 Theiler's murine encephalomyelitis virus (TMEV), 48, 91, 92, 95-98, 99, 269, 357 antiviral antibodies, 42, 44, 154; see also Beta-interferon autoantigens, 253 chlamydia, 90 demyelination, 7, 88, 89, 90, 91, 95-98, 99-100, 357-358 Theiler's murine encephalomyelitis virus (TMEV), 48, 91, 92, 95, 96, 99, 269, 357 genomics, 86, 87, 90, 95-97, 98-99 glia, 96, 97, 98 hepatitis, 95, 98-99, 100 herpes, 89-90, 354 human T-lymphocyte virus (HTLV), 85, 87, 99 mouse hepatitis virus (MHV), 95, 98-100 mutations, 97, 253

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Page 438 retroviruses, immunotherapy, 257 see also “AIDS” supra Semliki forest virus, 95 Visual evoked potentials, 44-45, 47 Visual impairments, 115, 148-149 see Optical pathologies assistive technology, 208 cognitive impairment and, 118 employment, 191 experimental autoimmune encephalomyelitis (EAE) vs MS, 92 measurement, 198-203 (passim) side effects of drug treatment, 145 Social Security Administration disability criteria, 402-403 spasticity and, 130 spatial perception, 116 Vitamins, 225, 406, 409 Voluntary health organizations, 344, 346 Vomiting, see Nausea and vomiting W Walking difficulties, 32, 35 measurement, 199, 201, 204, 385-386 wheelchairs, 128, 188, 199, 206-207, 209, 220, 222, 386 Weakness, ix, 128-130, 136-138, 388 see also Fatigue relapses, 32 research recommendations, 137-138 treatment, 132, 133, 137 Wellbutrin, 124-125 Wheelchairs, 128, 188, 199, 206-207, 209, 220, 222, 386 White persons, see Caucasians Women, see Gender factors World Federation of Neurology, 300 World Health Organization, 203-204, 212 World Wide Web, see Internet Y Yeast, 407, 408 Z Zanaflex (tizanidine), 130, 132-133, 134-135 Zenapax, 397 Zoloft, 124-125 Zostrix, 144-145