inflammation of mucosae

blades at novagate.com blades at novagate.com
Tue Mar 31 19:49:31 EST 1998


I may be way off base here, but you might want to look at some of the 
various forms of vasculitis such as Wegener's Granulomatosis (WG) and 
related ones. What I know about WG follows (hope it is of help to you)

Persons with PERSISTANT sinus/nose/ear/throat problems which do NOT
respond to NORMAL treatments might consider the possibility of an 
autoimmune disease by seeing a rheumatologist.

There is an auto-immune disease known as Wegener's Granulomatosis (WG).  
WG can be a relatively slow moving disease, or very sudden and severe.  
It can do irreversible damage in a short time.

WG is not contagious nor hereditary in so far as is known, though a 
tendency to autoimmune diseases seems to run in some families.

WG is only one form of vasculitis (there are several others).  It attacks 
blood vessels in soft tissues and organs.  It is fatal unless treated.  
Before about 1970 it was invariably fatal.. now there are some effective 
treatments, principally prednisone and either methotrexate or cytoxan, 
although bactrim, immuran, and cellcept are also used.  For life 
threatening cases, immunoglobulin and/or plasma phoresis are used.

Most physicians have never seen a case as it is fairly rare (1/40,000).  
It is best to find a physician who has experience with WG.  The average 
time from onset of symptoms to diagnosis is 5 months, though some go 
years, with severe damage to organs before being correctly diagnosed.

WG affects various organs with the approximate frequency listed with most 
frequent first: sinus, nose, ear, lung, joints, kidney, trachea, eye, 
skin, peripheral nerves, central nervous system. 

WG is tentatively diagnosed by a blood test (95% accurate) known as the 
cANCA test.  Not all labs do this test, Mayo Clinic lab being one that
does.  The tentative diagnosis is usually confirmed by biopsy.

The cause of WG is not known.  The immune system produces too much or the 
wrong type of neutrophils (white blood cells) which then attack the blood 
vessels, down to and including capillaries.  From talking with many WG 
patients, I believe that an overload of allergens is involved in most 
cases.  In an informal survey, it was found that a significant proportion 
of WG patients had deviated septums. 

There are other auto-immune diseases some of which have some symptoms 
similar to WG  Some of these are:

	Churg-Straus syndrome
        Polyarteritis nodosa
        Lupus Eurythematosis
        Microscopic Polyangiitis
        Lethal Midline Granuloma
        Necrotizing Respiratory Granculomatosis
        Pathergic Granulomatosis

There is an excellent support group which puts out a bi-monthly 
newsletter for an annual due of $10. (Tax deductable donations gratefully 
received). 

Wegener's Granulomatosis Support Group
P. O. Box 28660
Kansas City, Missouri
64188-8660
1-800-277-9474
1-816-848-4444 (fax/phone) 

Their web page at http://www.wgsg.org has lots of useful information and 
links. There is an e-mail group (usenet listserve group) at 
wegeners at weareb.org  Please e-mail the group if you have questions or 
concerns about this disease. 

P.S. I'm not a physician. What I've written above has been derived from 
experience and different publications. I can't be held responsible for 
the accuracy of said information. What I have said is what I've learned 
in researching my own case, and not necessarily applicable to others.

--
blades at novagate.com




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