BEST OF MYASTHENIA GRAVIS LINKS Distribute Freely
Revised 13 May 1997  
Description Web Address
   
Basic Web Information Websites and Patient to Patient Internet Connections
   
This page of websites for myasthenia gravis http://pages.prodigy.net/stanley.way/myasthenia/mgtable.htm
Myasthenia Gravis Links http://pages.prodigy.net/stanley.way/myasthenia/
Life With Myasthenia - dealing with daily issues TBD
Patient to Patient Connections - The services below are described and accessible through this page. http://pages.prodigy.net/stanley.way/myasthenia/patient.htm
To be added to mgmail list server, send an email to majordomo@listserv.prodigy.com Put 'subscribe mgmail' in text
To send messages to the mgmail mailing list mgmail@listserv.prodigy.com
   
Myasthenia Gravis Organizations MG organizations including those that encompass MG
   
MG Links Organization page with all of the organizations listed below plus others. http://pages.prodigy.net/stanley.way/myasthenia/organiza.htm
MG Foundation of America http://www.myasthenia.org
Myasthenia Gravis Chapters in the United States http://www.myasthenia.org/chapters/
MG Association of Colorado Homepage http:/www.4-mga.org
MG Association of Western Penna.Homepage http://trfn.clpgh.org/orgs/mga/
United Kingdom MG Association http://www.crabby.demon.co.uk/mga/
MGA Association Branches in the United Kingdom http://www.crabby.demon.co.uk/mga/branches/contents.htm
Myasthenia Gravis Association of Ireland http://ireland.iol.ie/imd/g14x.htm#MYASTHENIA
MG Assocation Belgium (English page under construction) http://www.dma.be/p/bewoner/MGLiga/index.htm
Muscular Dystrophy Association of Australia (A VERY good source of information.) http://www.mda.org.au/mdamg.html
AIM - IM; Associazioni italiana e internazionale per la lotta contro la Miastenia, an organization in Italy. http://www.vol.it/IT/IT/ASSOC/AIMIMG/
Dutch Neuromuscular Diseases Association - English information for VSN http://www.vsn.nl/engels.htm
Welkom op de HomePage van de Vereniging Spierziekten Nederland - an organization for neuromusclar diseases. http://www.vsn.nl/
Finnish Muscular (Dystrophy) Disease Association treats all neuromuscular diseases - has patient support groups. http://www.ttl.fi/lihastautiliitto/e-index.html
   
Diagnosis Specific diagnostic methods.
   
How is Myasthenia Gravis Diagnosed http:/www.4-mga.org/pubs/pguide/
howdiag.htm
Types of Myasthenia Gravis That Involve an Autoimmune Response http://www.macalester.edu/~psych/whathap/UBNRP/Gravis/
autoimmune_types.html
Diagnosis from the Merck Manual http://www.merck.com/!!sGLGz1nlhsGLIc0PMc/pubs/mmanual/
html/niikddfd.htm
Tensilon Test from AHCN (Housecall) Health Information http://www.housecall.com/databases/ami/convert/003930.html
Diagnosis of myasthenia gravis using repetitive stimulation and Single Fibre EMG http://www.neurofys.uu.se/methods/diseases/mg.html
Assesment including differential diagnosis, therapy, pathophysiology. University of Texas, 1994, Alan S. Tonnesen, M.D. http://www-anes.uth.tmc.edu/cc/nv/nvmyas.html
Diagnostic procedures are summarized by this Washington University-St. Louis page. http://www.neuro.wustl.edu/neuromuscular/mtime/mgdx.html
Explanation of the use of electro diagnosis by The American Association of Electrodiagnostic Medicine http://www.pitt.edu/~nab4/what.html
Diagnostic testing utilizing the AChR antibody test is detailed by the University of British Columbia, Canada. http://www.interchg.ubc.ca/neuroimm/mg.html
Stategies in electrodiagnostic medicine from an interesting Finnish writer http://www.tut.fi/~korpinen/emgstra.htm
Myasthenia Gravis (MG) is een neuromusculaire aandoening. (Diagnosis in Dutch) provided by VSN. http://www.vsn.nl/dia2214.htm
   
General Overview Websites that provide broad overviews of myasthenia issues.
   
A Practical Guide to MG by John C. Keesey, M.D. and Rena Sonshine - English version http://www.med.unc.edu/mgfa/mgf-prac
Disorders of the Neuromuscular Junction - Myasthenia Gravis, a general overview of diagnosis, treatment and prognosis. http://www.bcm.tmc.edu/neurol/research/nmus/nmus3b.html#mg
Description, Disorder and Autoimmune Involvement - from Macalester College. http://www.macalester.edu/~psych/whathap/UBNRP/Gravis/
real_mg_directory.html
Physical Manifestations of Myasthenia Gravis - from Macalester College. http://www.macalester.edu/~psych/whathap/UBNRP/Gravis/
physical_manifest.html
Management of MG: Introduction - from Macalester College. http://www.macalester.edu/~psych/whathap/UBNRP/Gravis/
management_intro.html
Patient Question and Answer on Mestinon from Dr. Henry Kaminski (new question each month) http://mediswww.meds.cwru.edu/dept/neurology/myasthenia/
mg896.html
How Does Research in MG Relate to Treatment? - from the Colorado MGA http:/www.4-mga.org/nov94/research.htm
Facts About Myasthenia Gravis - Causes, Treatments and Special issues (including pregnancy) - English version http://www.med.unc.edu/mgfa/mgf-fact.htm
   
How is Myasthenia Treated - an excellent article from the Colorado MGFA. http:/www.4-mga.org/pubs/pguide/treated.htm
Current Therapies: Making Informed Decisions - an excellent, patient oriented, overview of treatments. http:/www.4-mga.org/pubs/survival/therapy.htm
Myasthenia Gravis Survival Guide by Jeanne Rhynsburger, R.N. CCRN, MICN, ACLS. http:/www.4-mga.org/pubs/survival.htm
Overview of causes, treatments, etc. from the Family Internet. http://www.familyinternet.com/peds/top/000712.htm
Basic MG Information from Case Western Reserve University. http://mediswww.meds.cwru.edu/dept/neurology/
myasthenia/mgbasic.html
   
Thymectomy Information  
   
MDR 95 Conference produced three interesting papers including one describing a new thymectomy procedure. http://www.bio.unipd.it/~telethon/bam/abs62.html
Malignant Thymoma is thoroughly reviewed in this CancerNet information. http://caduceus.medinfo.org/nci/cancernet/2/201248.html
Thymus Evaluation from Washington University - St. Louis http://www.neuro.wustl.edu/neuromuscular/mtime/mgthy.html
Thymectomy for myasthenia gravis from MDX Health Digest. http://pathfinder.com/@@zdxP3wYAPOywGFCU/thrive/health/
Library/CAD/abstract7397.html
Thymoma, A short description (including X-ray images) of thymoma and diagnosis from Harvard Medical School http://www.med.harvard.edu/brad-bin/create_page.py/162/full
Thymoma - Information from MedicineNet on thymoma (description, diagnosis and treatment). http://www.medicinenet.com/answr/thymoma.htm
   
Plasmapheresis Information  
   
Plasmapheresis can be useful in strengthening patients with MG before thymectomy and during the postoperative period. http://text.nlm.nih.gov/nih/cdc/www/56txt.html#Head4
Plasmapheresis: A Treatment Option for Patients with Myasthenia Gravis by A. J. Pinevich, M.D. is written for patients. http://trfn.clpgh.org/orgs/mga/netnews1.html#Plamapheresis
Plasmapheresis and Intravenous Immune Globin from Macalester College. http://www.macalester.edu/~psych/whathap/UBNRP/Gravis/
short-term_immuno.html
   
IVIG Information  
   
Study Shows IVIG Safe, Effective Treatment for Muscle Disease is the title of this 1993 Press Release http://www.nih.gov/ninds/whatsnew/presswhn/1993/12-29-93.htm
IVIG Uses and Potential Risks are provided by the National Institutes of Health (NIH) Homepage. http://text.nlm.nih.gov:80/nih/cdc/www/80txt.html
IVIG Use in MG has been provided by a doctor of pharmacy student. http://pharmacy.isu.edu/idis/news/news0001.html
Intravenous Immunoglobulin (IVIG) For The Treatment of Myasthenia Gravis-Part II describes a new study http://pages.prodigy.net/stanley.way/myasthenia/ivigstdy.htm
   
Drugs Used to Treat Symptoms  
   
Pyridostigmine Bromide Reference - A very comprehensive reference for Mestinon http://www.gulfwar.org/UK/naps/psb02.html
Mestinon - drug characteristics from MDX Health Digest http://pathfinder.com/@@7C*iFAYA2u6Cet6J/thrive/health/
Library/drug/drug369.html
Side effects from Mestinon need to be treated occassionally. http:/www.4-mga.org/nov94/mestinon.htm
Nervous system drugs -pharmacologic characteristics of pyridostigmine (Mestinon), neostigmine, physostigmine - S.Africa http://medix.mmi.uct.ac.za/~jmoodie/n07html.html
Ephedrine - drug characteristics from MDX Health Digest http://pathfinder.com/@@7C*iFAYA2u6Cet6J/thrive/health/
Library/drug/drug170.html
   
Immune Suppressing Drugs  
   
Why Can't Prednisone Be Discontinued Suddenly? http://www.transweb.org/faq/faq_pred_discont.html
Prednisone - a complete medical information sheet from RxList - The Internet Drug Index http://www.rxlist.com/cgi/generic/pred.htm
Prednisone - description of usage, side effects, precautions, interactions with other drugs from MDX Health Digest. http://pathfinder.com/@@QwdlewYAPeyCet6J/thrive/health/
Library/drug/drug354.html
Cyclosporine - drug characteristics from MDX Health Digest http://pathfinder.com/@@7C*iFAYA2u6Cet6J/thrive/health/
Library/drug/drug143.html
MDR 95 Conference produced three interesting papers including one on the use of steroids, cyclosporine and azathioprine. http://www.bio.unipd.it/~telethon/bam/abs62.html
   
Special Issues  
   
Double Vision and Drooping Eyelids" Double Vision and Drooping Eyelids - from the Western Pa. MGA. http://trfn.clpgh.org/orgs/mga/news2.html#Double Vision
and Drooping Eyelids
Ocular myasthenia issues from the Western Pa. MGA. http://www.pitt.edu/~vklst1/ocular.html
Drugs which may aggravate MG; by Dr. Stanley Freedman are provided in this United Kingdom MGA homepage http://www.crabby.demon.co.uk/mga/mgdrugs1.htm
Drugs to be taken with caution are provided by the Myasthenia Gravis Foundation of America. http://www.med.unc.edu/mgfa/mgf-alrt.htm
Myasthenia Gravis in pregnancy from MDX Health Digest - Abstract. http://pathfinder.com/@@LYmPjAYAOfKfJC2r/thrive/health/
Library/CAD/abstract5981.html
Menstruation and Pregnancy is discussed in this MGA of Western Pennsylvania phamplet. http://www.pitt.edu/~vklst1/pregnancy.html
Study Investigates Fatigue in Myasthenia as reported in this MGA of Colorado article. http://www.infohiway.com/~jk/mgacolorado/aug94/fatigue.htm
The Effect of Myasthenia Gravis on Human Sexuality http://trfn.clpgh.org/orgs/mga/reprint.html
Childhood Neurology issues are focused on the University of Wisconsin homepage. http://www.waisman.wisc.edu/child-neuro/
Emergency management of myasthenia gravis - A Guide to Pre-Hospital Care from the MGFA. http://www.med.unc.edu/mgfa/mgf-emer.htm
   
Medical Information Some specific information on MG - some very technical.
   
Clinical Manifestations of myasthenia gravis are provided in this excellent summary of Epidemiology, Symptoms & Signs. http://neuro.wustl.edu/neuromuscular/mtime/mghxpe.html
Part I of a 1994 paper by Dr. Daniel Drachman of the Johns Hopkins University - a complete review of myasthenia gravis. http:/www.4-mga.org/nov94/progress.htm
Part II of a 1994 paper by Dr. Daniel Drachman of the Johns Hopkins University - a complete review of myasthenia gravis. http:/www.4-mga.org/feb95/progress.htm
Part III of a 1994 paper by Dr. Daniel Drachman of the Johns Hopkins University - a complet review of myasthenia gravis http://www.infohiway.com:80/way/mgacolorado/may95/progress.htm
Myasthenia in all forms is reviewed in this summary from Tampere University of Technology, Finland. http://www.tut.fi/~korpinen/emgdiso.htm#3neur
Washington University - St. Louis provides detailed medical information on symptoms, diagnosis and treatment. http://neuro.wustl.edu/neuromuscular/synmg.html
Actions and problems in the synapse are provided by researchers at Cornell University (Ed., very technical) http://www.tc.cornell.edu:80/er/sci93/
dis26synapse/dis26synapse.html
Myasthenia Gravis, Familial incidence from On-Line Mandelian Inheritance in Man. http://www3.ncbi.nlm.nih.gov:80/htbin-post/
Omim/dispmim?254200
Myasthenia Gravis, Familial Infantile [Myasthenia, Congenital included] from On-Line Mandelian Inheritance in Man http://www3.ncbi.nlm.nih.gov:80/htbin-post/
Omim/dispmim?254210
MuscleNet aims at informing the scientific community - pertaining to muscle biology and neuromuscular diseases. http://www.bio.unipd.it/~telethon/muscle.html
Evidence for an antigen driven selection process in human autoantibodies against acethylcholine receptor http://web.pasteur.fr/Bio/pub/cardona1.html
NIH Press Release of 16 May 1996 which goes with the above 17 May 1996 article on nerve-muscle connections. http://www.nih.gov/ninds/whatsnew/presswhn/
1996/knockout.htm
   
Research and Researchers Top researchers and some of their research abstracts.
   
Intravenous Immunoglobulin (IVIG) For The Treatment of Myasthenia Gravis-Part II - a Trial on 100 patients http://pages.prodigy.net/stanley.way/myasthenia/ivigstdy.htm
IXth International Conference on Myasthenia Gravis and Related Disorders is in May 1997. http://pages.prodigy.net/stanley.way/myasthenia/confer.htm
Audrey S. Penn, M.D. is newly appointed Deputy Director at NINDS of the National Institutes of Health. Wonderful. http://www.nih.gov/ninds/whatsnew/noteswhn/
mar96/penn96.htm
Sara Fuchs, M.D. at the Weizmann Institute in Israel. She includes her research goals for myasthenia gravis. http://www.weizmann.ac.il/brain/fuchs/fuchs.htm
Dr. Bianca M. Conti-Fine, University of Minnesota Medical School, includes a discussion of her myasthenia gravis research. http://www.med.umn.edu/mdphd/research/contifine.html
Daniel B. Drachman, M.D., Dir. of the NM Unit at Johns Hopkins Medical School and a reknowned leader in MG research http://www.med.jhu.edu/neurosci/
web_text_neurosci-PRIMARY-DRACHMAN.html
John Newsom-Davis Laboratory in England is a major MG research organization under it's namesakes leadership. http://immwww.jr2.ox.ac.uk/groups/jnd.html
Neuro-Immunology Labs., with the University of BC, Vancouver Hospital & Health Sciences Centre. is studying MG. http://www.interchg.ubc.ca/neuroimm/achrab.html
Neuromuscular Research locations are featured in this developing Italian homepage http://www.bio.unipd.it/~telethon/links.html
Myasthenia gravis research from the Amer. Acad. of Neurology 1996 Annual Meeting, summary by Robert McMichael, M.D. http://pages.prodigy.com/bobmcmichael/mg96.htm
Research through MGFA Fellowships and Grants - a record of recent years funded projects. http://www.med.unc.edu/mgfa/mgf-resr.htm
Computer Retrieval of Information on Scientific Projects) is a detailed source of research grant information. http://www.nih.gov/grants/ora/crisp.htm
Mandelian Inheritance in Man provided by the NIH provides detailed information on inherited disease. http://www3.ncbi.nlm.nih.gov/omim/
Genome Database provided by Johns Hopkins University deals with details of disease and genetics. http://gdbwww.gdb.org/
   
Individual Stories Stories of successes and difficulties dealing with myasthenia gravis.
   
Famous myasthenics - a listing of well known myasthenics http://pages.prodigy.net/stanley.way/myasthenia/famous.htm
"It Took 10 Years But Look At Me Now" is the success story of Jenny Legard losing weight while dealing with prednisone. http://pages.prodigy.net/stanley.way/myasthenia/legard.htm
"The Second Time Around with Crisis" is a serious story of MG crisis as written by Charlotte Rogato. http://pages.prodigy.net/stanley.way/myasthenia/rogato.htm
"Making it Easier to Live with Myasthenia Gravis" by Debbie Marshall. http:/www.4-mga.org/feb95/living.htm
Setback sweetens student's dream is the story of Jamie Rand as written in this Portland Press Herald article http://pages.prodigy.net/stanley.way/myasthenia/rand.htm
Wilma Mankiller - Story of this former Chief of the Cherokee Nation who has myasthenia gravis. http://www.powersource.com/powersource/gallery/people/wilma.html
Marleen Burns describes a 10 year long struggle with MG http:/www.4-mga.org/aug94/remision.htm
Ed, Laura, Marlene and William tell their stories through the MGA of Western Pennsylvania. http://www.pitt.edu/~vklst1/experience.html
Tracy Lynn's Story is a story with a sad ending as told my her family. http://ourworld.compuserve.com/homepages/roberttallen/
Randy's homepage describes his battles with myasthenia gravis. http://members.aol.com/Roknrandy/roknrandy.html
"The Proof of Steroids is in the Skiing" is the story of Robert Wright and his victory over slowly progressing MG. http://www.crabby.demon.co.uk/mga/mganews/ski.htm
The Silent Trumpet- the story of a 15 year old former trumpet player with MG. http://www.geocities.com/HotSprings/8250/silenttrumpet.html
   
Congenital Myasthenia Syndrome Information specific to the congenital myasthenia syndrome
   
Childhood Myasthenia includes congenital, neonatal and juvenile diseases as described in this Colorado MGA article. http:/www.4-mga.org/aug95/child.htm
Ephedrine and congenital myasthenia are the subject of this physician's note on the MGH NeuroWebForum. http://dem0nmac.mgh.harvard.edu/neurowebforum/
ChildNeurologyArticles/ephridrinecongentlmyasthenia.htm
   
Non-English Myasthenia Gravis Information  
Spanish  
GUIA PRACTICA PARA LA MIASTENIA GRAVE - Por : John E. Keesey, M.D. y Rena Sonshine http://pages.prodigy.net/stanley.way/myasthenia/pracspan.htm
DATOS ACERCA DE LA MIASTENIA GRAVIS http://pages.prodigy.net/stanley.way/myasthenia/factspan.htm
Timectomia en el tractament de la Miastènia Gravis en infants http://www.acmcb.es/societats/39/pedcatult/timectomia.html
Video Assisted Thoracic Surgery (VATS) from Brazil (in Spanish) http://www.epm.br/cirurgia/vats/VATSIP.HTM
Miastenia Gravis - (Brazilian) Brief summary http://www.ufrj.br/medicovirtual/informa/neurologia/miast.htm
Italian  
(Associazioni italiana e internazionale per la lotta contro la Miastenia), an organization in Italy for myasthenics. http://www.vol.it/IT/IT/ASSOC/AIMIMG/
U.I.L.D.M. LA MIASTENIA - (Italian site) Una guida per il medico generico http://andi.casaccia.enea.it/andi/stampa/RIVISTE/DM/
ISSUE/opusco/opu/Miasten.htm
Italian summary - a general review of causes, symptoms, age groupings, genetics, treatments and prognosis http://www.bio.unipd.it/~telethon/T95/mg.html
French  
UN GUIDE POUR LA MYASTHENIE par John C. Keesay, M. D., et Rena Sonshine http://pages.prodigy.net/stanley.way/myasthenia/pracfren.htm
Belgian  
Myasthenia Gravis Association Belgium has a wealth of information on myasthenia gravis. http://www.dma.be/p/bewoner/MGLiga/index.htm
Dutch  
Vereniging Spierziekten Nederland. This is an Association of and for people with neuromuscular diseases. http://www.vsn.nl/
Myasthenia Gravis (MG) is een neuromusculaire aandoening (Diagnosis in Dutch) provided by VSN. http://www.vsn.nl/dia2214.htm
Finish  
Finnish on myasthenia gravis - Suomen MG http://www.jyu.fi./~vamtutk/mg.html

Last Update: 8/99

Name: Stanley Way

Email: stanley.way@prodigy.net