Useful Sites

[Bobbi]

Cyndee Miller's Lupus Home Page
http://www.public.asu.edu/~cyndee74/ (http://www.public.asu.edu/%7Ecyndee74/)

Lupus Foundation of America
http://www.lupus.org/

Lupus Foundation of New England
http://www.lupusne.org/

LupusNY.org - Systemic Lupus Erythematosus Foundation
http://www.lupusny.org/

Lupus/Systemic Lupus Erythematosus (SLE)
http://www.arthritis.org/conditions/DiseaseCenter/lupus.asp

Lupus UK
http://www.lupusuk.com/

The Lupus Site
http://www.uklupus.co.uk/

Lupus
A free collection of articles about lupus published in The New York Times.
http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthtopics/lupusdisease/index.html?inline=nyt-classifier

Lupus Support Group Message Board - Lupus Bulletin Board
http://www.wehavelupus.com/

Patient Education - Systemic Lupus Erythematosus
http://www.rheumatology.org/public/factsheets/sle_new.asp

The Many Shades of Lupus
http://www.niams.nih.gov/hi/topics/lupus/shades/index.htm

[jccgf]

Celiac disease is the only autoimmune disease that has a known cause...an abnormal immune system response to food containing gluten (wheat, barley, rye). It is also associated with other autoimmune disease, especially autoimmune thyroid disease and Type 1 Diabetes. Some research suggests that gluten sensitivity may play a causitive role in the development of other autoimmune disease, and there are many interesting reports in medical literature of various other diseases improving or resolving once the celiac/gluten sensitive patient begins a gluten free diet.


From:
Emerging concepts in celiac disease by William Treem, MD (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15367850&query_hl=68&itool=pubmed_docsum)

"The association of CD with autoimmune diseases, particularly Type 1 diabetes and autoimmune thyroid disease, has been widely reported with some investigators finding a ten-fold increase in patients with CD compared with the general population [68,69].Less clear is the link between CD and Sjögren syndrome, primary biliary cirrhosis, Addison disease, autoimmune chronic active hepatitis, cardiomyopathy, and peripheral neuropathy (not due to B-12 or vitamin E deficiency) [70–73•,74•].


When both CD and autoimmune disease occur in a patient, CD is most often silent.The autoimmune disease is diagnosed first with the diagnosis of CD the result of serologic screening in this high-risk population.

The question whether the early diagnosis and treatment of CD reduces the risk of developing other autoimmune diseases is still open to debate.There are several lines of evidence that support the notion that CD is a causative factor in the development of other autoimmune diseases. A recent study suggests that the prevalence of autoimmune diseases is closely related to the duration of gluten exposure and the age of initiation of a GFD with children diagnosed and treated before 2 years of age having little subsequent increased risk [75].Older children diagnosed with CD have a higher than expected frequency of organ-specific autoantibodies that tend to disappear after starting a GFD.Anecdotal reports suggest that socalled "celiac neuropathy", IgA nephropathy, juvenile rheumatoid arthritis, and autoimmune myocarditis will all improve when patients who have underlying CD are maintained on a strict GFD [73•,74•,76,77]. "




For more info see:
The Gluten File (http://jccglutenfree.googlepages.com/)


Especially:

At Risk Population for Gluten Sensitivity/Celiac Disease (http://jccglutenfree.googlepages.com/atriskpopulation)

Type 1 Diabetes and Autoimmune Thyroid Disease (http://jccglutenfree.googlepages.com/type1diabetesandautoimmunethyroiddisease)

Multiple Sclerosis (http://jccglutenfree.googlepages.com/multiplesclerosis)

Other Autoimmune Disease (http://jccglutenfree.googlepages.com/otherautoimmunedisease) ~
Addison's, Liver, Kidney, Colitis, Gastritis, Rheumatoid Arthritis, Lupus, Sjogrens, Sarcoidosis, Thrombocytopenia, Vitiligo, Alopecia Areata

[Silverlady]

Good sites for Sjogren's sufferers:

for a good forum sponsered by the Sjogrens Syndrome Foundation:
www.sjogrensworld.org

for relief from dry eyes at night, I've used these for two+ years:
www.eyeeco.com

good dryeye forum:
www.dryeyezone.com

Billye

[dahlek]

www.lizajane.org as a reference site. While directed towards spinal and PN issues, I believe LJ [AKA NYCSilk] is expanding relevant tests for other neuro areas.
Since ANY neuro diagnostic process is one of elimination...that of excluding anything truly diagnosable, the LJ charts are invaluable for a confused person, or even one sort of in the know [meaning, a person w/o a med degree], to learn where they stand in terms of that nasty word called TESTING! Second opinions and further tests are cheap, I know because I did just that and I am sure I'd be a doddering, miserable, wheelchair-bound, mind-blasted from meds, non-functioning being without those second opinions!

There's a lot of 'language' in those charts, learn them, use your instincts and don't give up! I was LUCKY[B] I found docs that got the tests for me that I needed and the treatments as well.

Another primer of what neuros look for is at www.neuroexam.com Work your way from the intro on down . Knowing what they are initially looking for by doing some seemingly silly stuff is insight to the problems they are REALLY looking for - j

[firemonkey]

http://www.doaj.org/

[dahlek]

Below are a list of site I've dug up for others about IVIG -if you want more technical info, PM me.

http://www.igliving.com:80/index.html

http://www.news-medical.net:80/?id=19244

http://www.news-medical.net:80/?id=19244

http://www.infusionsystems.net/article-ExpandingUseofIVIG.html

http://qjmed.oxfordjournals.org:80/cgi/content/full/95/11/717

http://www.resourcenurse.com:80/feature_ivig.html

http://www.iggamerica.com:80/control/ContentPage.aspx?target=FAQs

http://ruralnurseorganization-dl.slis.ua.edu/clinical/neurology/neuromusculardisorders/guillain-barre.htm

Please read these, there's lots of good basic and some more practical stuff on IVIG and how it should be given. Solid information should be the basis of deciding whether to try it or not. I am glad I did! - j

[dahlek]

for CIDP and other stuffs:

http://pns.ucsd.edu/Guidelines_CIDP.pdf
http://pns.ucsd.edu/Guidelines_paraproteinemic_neuropathy.pdf
http://pns.ucsd.edu/Guidelines_multifocal_neuropathy.pdf


The host site is: http://pns.ucsd.edu:80/

It has links to some free articles published ...Good stuff...!!!!!!!!!!!!!! - j

[dahlek]

Apparently the European Conference last year or so about 'defining' CIDP is now becoming practice. This is a very awesome website! - j

http://www.cidpinfo.com/

[Chemar]

excellent resource website for P.A.N.D.A.S. (Pediatric Autoimmune Illness Associated with Streptococci)

http://www.pandasnetwork.org/index.html

[dahlek]

This is the best of the updates regarding diagnosis of some autoimmune neuropathies:
http://www.guidelines.gov/search/searchresults.aspx?Type=3&txtSearch=CIDP&num=20

The first one is good reading, the others more of the same. Nothing newer than these tho so far.... keeping an eye out on it for the future tho! - j