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www.aboutgbs.com Guillain-Barre Syndrome
This is my links page of website I felt might be of interest or informative to you. Click the links below for the different subjects. Know of a good site I don't have listed? Contact Me
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My
Experiences
Provide Help Info
Survivors' stories
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General Info About GBS http://www.guillain-barre.com This link will take you to the international Guillain~Barre Foundation International which has lots of information available. They offer discussion boards, chat rooms, and an online store which sells books on the subject. They also have a good information package they can send you. They ask for $6 to help offset costs but it is worth the money which does go to an excellent cause. http://my.webmd.com/content/healthwise/120/29773.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348 Is a link to the WebMD site discussing treatment of Guillain~Barre Syndrome. http://health.discovery.com/diseasesandcond/encyclopedia/666.html Is a Discovery Health Channel description of Guillain~Barre Syndrome and how it effects the body. http://health.yahoo.com/health/encyclopedia/003188/0.html This comes from Yahoo and talks about muscle atrophy. This is going to happen if one lays in a bed unable to move. http://www.makoa.org/index.html has disability information and numerous resources. A great starting point to find answers to your disability questions. http://www.neuro.jhmi.edu is the website for the Department of Neurology at John Hopkins. http://www.mayoclinic.com/index.cfm is the website for the Mayo clinic. http://www.gbs.org.uk is the support group for those of you in the UK and Ireland. http://www.medicare.gov Is the website for Medicare. http://www.rxlist.com is a great site for looking up information on the different meds and any side effects they may have. Well worth a book mark! http://www.medhelp.org another website that provides good information about meds. http://www.mentalhealth.com is an informative website about mental health issues.
Diagnosing http://my.webmd.com/content/healthwise/119/29577.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348 This link takes you to a definition of what an EMG is. EMG's are often utilized to determine if someone is suffering from Guillain~Barre Syndrome. http://my.webmd.com/content/article/57/66115.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348 Will provide you with information about spinal taps which are also used to determine if someone is suffering from Guillain~Barre Syndrome. http://ist-socrates.berkeley.edu/~jmp/DisordersofMyelination.html has some excellent information about the myelin sheath, how it works, and and the different diseases that affect it. Treatment http://www.mdausa.org/publications/fa-plasmaph.html This link goes to the Muscular Dystrophy Association website where they do a good job of describing plasmapheresis which is a treatment for Guillain~Barre Syndrome. http://my.webmd.com/content/article/57/66120.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348 is another WebMD link to a chemotherapy drug my neurologist administered to me with the hope it would curb the GBS. There is no medical proof this works, but with nothing else showing results we gave it a shot. http://my.webmd.com/content/healthwise/80/19898.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348 after going on antibiotics I got a nasty case of thrush which took a LONG time to get rid of. Man but did that medication they put in my mouth taste NASTY!! Support Equipment
The Efica and the V-Cue are two beds from the company Hill-Rom that I was in while hospitalized and on the vent. These beds are great for the prevention of skin breakdown for extended stays in the hospital. They also offer vibration and percussion modes that were comforting and excellent for breaking up the congestion in my lungs. While I found the vibration and percussion settings on the V-Cue better, the Efica was more comfortable, but not as long. Talk to the nursing staff, Hill-Rom supplies beds to most hospitals. Medical Procedures
http://medicine.creighton.edu/forpatients/trache/trache.html
tells what a tracheostomy is.
http://ekhsin.morehead-st.edu/aha/crs/gasfed.htm discusses PEG tubes (percutaneous endoscopic gastrostomy tube) and the ins and outs about them. http://my.webmd.com/content/article/4046.1230 this site tells you the ins and outs of morphine. It was one of the first methods of pain relief they used on me. my but can it induce some STRANGE dreams and hallucinations. http://my.webmd.com/content/article/4046.1223 When I began to build a tolerance to morphine I was given a Fentanyl patch which helped a lot. Other GBS Related Stuff http://my.webmd.com/content/article/1680.50567 discusses urinary tract infections. This was a common occurrence for me. http://psych.athabascau.ca/html/Psych289/Biotutorials/1/part1.html is a very informative website that shows what a Neuron and the myelin sheath actually look like. Other GBS'ers www.jackybuder.com Jacky is a former world champion body boarder from Hawaii who has GBS. Visit his site and send him a get well message!
http://www.gbsinfo.de
give support to the German language countries in
Europe like: Austria, Germany, Liechtenstein, Switzerland. http://www.geocities.com/sirdaveofjersey/home.html This site belongs to Dave in NJ. http://liverpool.rivals.net/default.asp?sid=890&p=2&stid=8283655 Here is another success story. http://www.gbstasmania.asn.au is the website for the GBS support group in Tasmania. http://www.geocities.com/westshape is a site dedicated to Laurie Jean Miller. http://tonya.shandleyonline.net is Tonya's website about GBS. http://www.mygbs.blogspot.com is Jim's story about his battle with GBS. http://www.gbsnsw.org.au GBS website for New South Wales, Australia. groups.msn.com/WereAllInThisTogether This is Ellen's MSN group dedicated to those with auto-immune diseases and those who support them.
http://www.dsa.unipr.it/giavelli/GBS/
This is Giavelli's Italian website
about his experience with GBS
CIDP http://www.hwy41north.com is a site for those seeking information about CIDP. http://www.ericvance.net is a site developed by Eric Vance about CIDP.
http://www.cidpusa.org
They provide support for treatment,
provider selection, insurance coverage. Help answer patients questions
about treatment, condition and research. They answer email on a daily
basis.
Miller Fisher Variants http://www.jsmarcussen.com/gbs/uk/uk_index.htm is a a site about a young boys battle with Miller Fischer Variant.
Dutch GBS Website http://www.hblom.com/cgi-bin/ikonboard.cgi This is a Dutch language based forum concerning GBS, CIDP, MFS, etc. where people can get in touch with each other.
This page was last modified: April 14, 2005
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