'Dedicated to the memory of my darling friend Laurie Jean Miller'

Hi.... my name is Kezzi, also known as Retro for some mad reason, and I am the Cumbria counsellor / contact with the GBS Support Group of the United Kingdom. I am what is known as a special interest contact, my interests lying in CIDP (chronic idiopathic demyelinating polyradiculoneuropathy) and AMSAN (acute motor and sensory axonal neuropathy).

I was originally diagnosed with Lyme Disease by an American medical student in the UK in 1976 which, "as Lyme Disease doesn't exist outside the States" and I'd "never visited there" before was misdiagnosed as degenerative GBS (diagnosis recorded in 1986) and as things slowly worsened I was re-diagnosed with CIDP (axonal), a variant of Guillain-Barré Syndrome, in 1990. After I steadily worsened until the point of two heart attacks, pancreatitis, loss of bladder and bowel function and rheumatoid arthritis with fibromyalgia I visited a specialist who diagnosed late stage Lyme Disease and told me I was one of the unfortunates who had been misdiagnosed due to many misconceptions about Lyme. Anyway, I started this thing and so I'll continue for all those who have a diagnosis of GBS or CIDP.

I have developed many contacts around the world via the Internet and in doing so have realised that there are many more questions to be asked than I alone can answer. Therefore here is my own links page, possibly the largest collection of GBS related links on the Internet, comprising links that I myself have found extremely useful in my own search for information.

Return to index for quick links...

(all links in alphabetical order)

GBS/CIDP specific sites

Foreign language GBS sites

Books and literature

Medical

Guides

Journals and newsletters

Personal accounts/books

Chatrooms, forums, mailing lists

Other sites of relevant interest

Search for

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GBS/CIDP specific sites

24dr.com Reference Library

Acute Immune Polyneuropathies

C.I.D.P. Organization of USA
CIDP Support
Disability Resources WebWatcher

Disorders - National Institute of Neurological Disorders and Stroke (NINDS) CIDP information

Doctor's Medical Library

Doctor's Who's Who - Health Information

Emergency Medicine/Neurology

Everything you ever wanted to know about GBS... almost!

From Healthy to Helpless

GBS - Childhood Study

GBS.org

GBS; Treatment, Prevention, Cure

GBS - Keep Kids Healthy

Gentiva Health Services' CIDP and AIDP (Guillain-Barré Syndrome) Information Center

Guillain-Barré Syndrome Foundation International

Guillain Barré Syndrome - New Zealand

Guillain-Barré Syndrome Support Group of the United Kingdom

Inflammatory Neuropathies other than GBS and CIDP

Information resource for CIDP and AIDP

IntelliHealth: Featured Health Areas. GBS

Jefferson Health System - Nervous System Disorders: Causes

Kidz' Zone - Information for children on CIDP and Guillain-Barré, also offers pen pals, stories

MedEmall

Med Help International Archive

Medical College of Georgia

Medicine.org The Comprehensive Medicine and Health Portal

MEDLINEplus: The primary NIH organization for research

National Dysautonomia Research Foundation. Acute Idiopathic Polyneuritis

National Women's Health Information Center

Neuroland. Neurology information for physicians and health professionals

Neurology Channel - Guillain-Barré Syndrome

Neuromuscular Diseases information

Nervous System Disorder - Methodist Health

Nervous System Disorder - GBS (Muschealth.com)

Nervous System Disorders - ViaHealth Disease and Wellness Information

Neuromuscular Disease Centre

NINDS Guillain-Barré Syndrome Fact Sheet

Overlake Healthscape Infobank

Pathophysiology: Acute inflammatory polyradiculopathy. Criteria for Intensive Care Unit

Patient UK Search. Online Pharmacy. British Information

Spartanburg Regional Healthcare System

Vanderbilt University Medical Center - Neurology - CIDP

What is Guillain Barré syndrome?

Foreign language sites

El Sindrome de Guillain - (Espanol)

Retrouvez tous les témoignages sur le Syndrome de Guillain-Barré sur Free (Francaise)

VSN: Guillain-Barré Syndrome (Nederlande) - Comprehensive information in Dutch from the Dutch Neuromuscular Diseases Association/Vereniging Spierziekten Nederland (VSN)

Het Guillain-Barré Syndroom (Nederlande)

GBS discussion forum, articles, and information (in English and Norsk)

Guillain-Barré-syndrom (Norsk) Information in Norwegian from the Munkvoll Rehabiliteringssenter

Guillain-Barré Syndrom (Dansk - Danish)

Svenska Guillain-Barré Syndrom Stödgrupp. (Swedish GBS Support Group)

Infoserver über das Guillain-Barré Syndrom [ Guillain-Barre Polyradikulitis GBS CIDP Miller-Fisher] (Deutsche)

Guillain-Barré Syndrom (Deutsche) Information in German, links to other languages

Guillain-Barré Syndrom (Deutsche) Information in German from Dr. Thomas Walser of Switzerland

Paraneoplastisch Syndrome (PNS) - (Deutsche)

Choroby periferneho nervoveho systemu Lekri/ Choroby, syndrmy, dysfunkcie/ Choroby nervovho systmu/ Choroby perifrneho nervovho systmu. Vber odkazov: Vanderbilt University(US) - (Slovak)

Guillain-Barré Syndrome Information Page (Nippon) Information on the syndrome in Japanese. Requires Japanese character set.

Medical

AudioHealth Library Topic 1068

Campylobacter jejuni Strains from Patients with GBS

Bosch, E.P. and Mitsumoto, H., (1989) "Chronic inflammatory demyelinating polyradiculoneuropathy". Neurology in Clinical Practice.

McCombe, J.D. et al., (1987) "Chronic inflammatory demyelinating polyradiculoneuropathy: a clinical and electrophysiological study of 92 cases". Brain, 110, pp.1617-1630.

Ouvrier, R., McLeod, J.G., Pollard, J., (1990) "Chronic inflammatory demyelinating polyradiculoneuropathy. Peripheral Neuropathy in Childhood"

Development of Guillain-Barré Syndrome Following Campylobacter Infection

Hughes, R.A.C. (1990) "Guillain-Barré Syndrome". Springer-Verlag, Berlin.

Parry, Gareth J., (1993) "Guillain-Barré Syndrome". Thieme Medical Publications Inc., New York.

Ropper, A.H., Wijdicks, E.F.M. & Truaux, B.T. (1991) "Guillain-Barré Syndrome". F.A.Davis Co, Philadelphia.

Irish Medical Journal, Issue 8, December 1997 Volume 90 Number 8

vanDoorn, P.A., et al., (1990) "High dose intravenous immunoglobulin treatment in chronic inflammatory demyelinating polyneuropathy: a double-blind, placebo controlled, cross-over study". Neurology, 40, pp.209-214.

Dwyer, J.M., (1992) "Manipulating the immune system with immune globulin". NEJM, 326, pp.107-16.

Hughes, R.A.C. (1985) "Plasma Exchange for Guillain-Barré Syndrome". The British Medical Journal, 291, pp.615-616.

Guillain-Barré Syndrome Study Group (1985) "Plasmapheresis and Acute Guillain-Barré Syndrome". Neurology, 35, pp.1096-1104.

Roper, T.A. & Alani, S.M., (1995) "Recurrent Guillain-Barré syndrome: Lightning does strike twice". British Journal of Hospital Medicine, 52, No.8, pp.403-407.

Feasby, T.E., et al., (1993) "Severe Axonal Degeneration in Acute Guillain-Barré Syndrome: Evidence of two different mechanisms?". Journal of the Neurological Sciences, 116, pp.185-192.

ThriveOnline Medical Library

Tufts Neurology: GBS. Nat'l Inst. of Neurological Research(US) MEDLINE: Ropper AH, Victor M, N Engl J Med 1998 Dec 17;339(25)

Guides

"Childhood GBS - a guide for parents and carers"

"CIDP"

"Guillain-Barré Syndrome(GBS)....A Quick Guide"

"Guillain-Barré Syndrome - A short guide for the patient, relatives and friends"

"Peripheral Nerve Disorders - an explanation for patients, relatives and friends"

Journals, Newsletters

"Reaching Out" - The Journal of the GBS UK Support Group UK

"The Communicator" - Journal of the GBS Foundation International USA

Personal accounts

Antman, Michael, "Cherry Whip". ENC Press, New York.
A serio-comic story about a young jazz musician from Japan who is stricken with Guillain Barré Syndrome while on his first trip to America. Though the protagonist is fictional, his experiences with the disease are directly based on the author's own father's struggle with GBS about 15 years ago.

More information at the publisher's Web site, www.encpress.com, or at www.amazon.com.

Ayyildiz, Judy Light, "Nothing But Time" (Xlibris.com)
Overnight, everything in her life alters when Judy awakens paralyzed from the waist down by a mysterious illness. As she struggles for the courage to find a way of escape from this well of isolation, pain and powerlessness, her creative imagination takes flight. Armed with insight gleaned from her own stories about events and people in her past and present -- told with restrained humor and often with Appalachian flavor -- Judy discovers that her spiritual desire to "walk" is stronger than the fear of falling.

Baier, S. & Zimmeth, "Bed Number Ten". Wolfe Medical Publications Ltd.

Borshik, Dave "It Could Be You". (Available via www.gbs.uk.org/)

Hatrick, Gloria. "Masks". Julia MacRae Books.

Heller, J. & Vogel, J. "No Laughing Matter". Jonathan Cape.
It all began one typical day in the life of Joe Heller. He was jogging four miles at a clip these days, working on his novel God Knows, coping with the complications of an unpleasant divorce, and pigging out once or twice a week on Chinese food with cronies like Mel Brooks, Mario Puzo, and his buddy of more than twenty years, Speed Vogel. He was feeling perfectly fine that day -- but within twenty-four hours he would be in intensive care at Manhattan's Mount Sinai Hospital. He would remain hospitalized for nearly six months and leave in a wheelchair.

Joseph Heller had Guillain-Barré syndrome, a debilitating, sometimes fatal condition that can leave its victims paralyzed from head to toe. The clan gathered immediately. Speed -- sometime artist, sometime businessman, sometime herring taster, and now a coauthor -- moved into Joe's apartment as messenger, servant, and shaman. Mel Brooks, arch-hypochondriac of the Western world, knew as much about Heller's condition as the doctors. Mario Puzo, author of the preeminent gangster novel of our time, proved to be the most reluctant man ever to be dragged along on a hospital visit. These and lots of others rallied around the sickbed in a show of loyalty and friendship that not only built a wild and spirited camaraderie but helped bring Joe Heller, writer and buddy extraordinaire, through his greatest crisis.

This book is an inspiring, hilarious memoir of a calamitous illness and the rocky road to recuperation -- as only the author of Catch-22 and the friend who helped him back to health could tell it. No Laughing Matter is as wacky, terrifying, and great-hearted as any fiction Joseph Heller ever wrote.

Orridge, D. "No Surrender". Overton Press, Nottingham.

Ramsell, Andrea. Her story.

Riley, Jane, "Solomon's Porch: The Story of Ben and Rose" Beth Jacks, usadeepsouth.com, 2001
Jane Riley describes in beautiful, moving prose the difficulties of maintaining a loving relationship in the midst of illness.

Guillain-Barre' syndrome is more than a disease: it is a disaster. SOLOMON'S PORCH, THE STORY OF BEN AND ROSE, is the intimate fictional account of one family's struggle with an ailment that left Ben Windham paralyzed and his relationships with people changed.

Turner, K. "Kezzi's Story" (Extract) Westshape, Dalton-in-Furness, UK.

Wilcox, Dorris R., "Transforming Tragedy Into Triumph - A book about one person's experience with Guillain-Barré syndrome". The Cote Literary Group.
Combining aggressive self-education, massive doses of positive thinking, a barrage of nutritional supplements and unshakable faith in Gods healing power, Dorris Wilcox achieved against the odds 95% recovery from Guillain Barr Syndrome, a potentially lethal neurological disorder. She gives sufferers from all debilitating afflictions the tools to acquire and maintain the positive mindset they need to triumph over their own adversity. Also included is an extremely helpful, comprehensive appendix of sources for additional information on Guillain Barr Syndrome.

Wilson, Yvonne M. "Sifted Gold", Concordia Publishing House, St Louis/London, 1974.

CIDP diagnosis via lumbar puncture - Discussions with a neurosurgeon

GBS_CIDP mail-list - An unmoderated mail and chat forum for GBS/CIDP patients and carers

GBS Vaccine Reactions Discussion Board

Kezzi's GBS and CIDP chatroom - Pop in for an online chat

Neurology Chat Rooms @ Massachusetts General Hospital - Neuropathy related chat rooms

American Autoimmune

Antiviral Agents Bulletin - News and articles about current antiviral issues

Barbara's Little CIDP/GBS Site - More relevant links

Charcot-Marie Tooth

Disabled Living Foundation (UK)

Everything you ever wanted to know about GBS... almost! - My own site with lots of info

'Flu is a bummer - Issues about 'flu and immunizations etc.

GBS & CIDP Discussion - Sign up for UNMODERATED email discussion. Get it off your chest...!!

GBS related Home Pages - Links to other (GBS related) home pages. Where's yours?

Glaxo Neurological Centre

Inflammatory Neuropathies Group

International Drug Index

Kidz' Zone - Information for children on CIDP and Guillain-Barré, also offers pen pals, stories

MedicineNet - Health information

MedLine - Medical Publications on-line

My Home Page - Secrets laid bare!!!

Neuropathy Association

Nerve Pain and the Weather

Paraproteinaemic Demyelinating Neuropathy or MGUS-associated Neuropathy

Paraprotienaemic Neuropathy

Pharmacological Information Network

Restless Legs Syndrome Foundation

Social Security Administration (USA) - Disability

Social Security (DSS) UK

Social Security (International) Links

Virtual Hospital - Online health education service

World Health Organization

Yale Neurology Home Page

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If you know of any links that can be included on this page or
any broken or outdated links please feel free to contact me at:

gbslinks@westshape.co.uk

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Last modified on: 03 April, 2006