Current time: 11-25-2017, 05:19 AM Hello There, Guest! (LoginRegister)

Post Reply 
Very Rare Disease
02-07-2015, 09:42 AM
Post: #1
Very Rare Disease
Inclusion Body Myositis is a debilitating disease that deteriorates the skeletal muscles of the body. I realize this is disease is not related to AO, however, who knows? I was diagnosed with this extremely rare disease in 2003 and had to retire on disability. Presently I am unable to walk and my life consists of a mobile scooter. Something triggered this reaction in my body, could it be something from my Naval experiences. No one knows. There is no known cause and no effective treatment for this disease. Just thought I would put this out there and wondering if anyone else from BWN has anything similar to this?
Visit this user's website Find all posts by this user
Quote this message in a reply
02-07-2015, 04:10 PM
Post: #2
RE: Very Rare Disease
Bone, muscle, and connective tissue degeneration (deterioration?) is a common complaint of Agent Orange exposure. I don't know the fancy medical terms they can pin on those, but wouldn't the results be the same? Because there is an element of autoimmune disorder, wouldn't that bring it into the realm of dioxin symptoms? I'm just shooting from the hip here, but maybe some word searches through the BVA database would bring up some similarities? If so, would a re-diagnosis (since this is so rare) be in order?

-JR

Rossie
*************
A Veteran -- whether active duty, discharged, retired, or reserve -- is someone who, at one point in their life, wrote a blank check made payable to The United States of America, for an amount up to and including their life.
Visit this user's website Find all posts by this user
Quote this message in a reply
02-07-2015, 04:24 PM
Post: #3
RE: Very Rare Disease
Possible. I will check the BVA list. I am dealing with one of the leading specialist in this disorder, (University of Pittsburgh). They say there is no known cause, however, who knows. Thanks Jr
Visit this user's website Find all posts by this user
Quote this message in a reply
02-08-2015, 08:50 AM
Post: #4
RE: Very Rare Disease
John, what does BVA stand for?
Visit this user's website Find all posts by this user
Quote this message in a reply
02-08-2015, 12:45 PM
Post: #5
RE: Very Rare Disease
I'll jump in: Board of Veterans' Appeals. Here's a link: http://www.bva.va.gov/

James A. Smith
USS Butte (AE-27) 72-73
USNA Class of 1972
Find all posts by this user
Quote this message in a reply
02-10-2015, 12:22 PM
Post: #6
RE: Very Rare Disease
Soft tissue sarcoma is on the AO list of diseases. I'll check with my specialist to see if there is a possible connection. Thanks for the info
Visit this user's website Find all posts by this user
Quote this message in a reply
02-17-2015, 05:07 AM
Post: #7
RE: Very Rare Disease
Some of the disease are there in the world which is very rare and it seems like not to recover soon but when this type of disease appear the research goes on it and after some time a new medicine discover as its medication.
Find all posts by this user
Quote this message in a reply
02-17-2015, 08:55 AM
Post: #8
RE: Very Rare Disease
(02-17-2015 05:07 AM)lindseynicole Wrote:  Some of the disease are there in the world which is very rare and it seems like not to recover soon but when this type of disease appear the research goes on it and after some time a new medicine discover as its medication.
The web site Myositis.org explains these types of diseases. Currently, there is research being conducted, however, funding is a problem since it is so rare that it will be long time, if ever to find an effective cure.
Visit this user's website Find all posts by this user
Quote this message in a reply
11-21-2016, 06:43 AM
Post: #9
RE: Very Rare Disease
Thanks for sharing that excellent thread with us.
Best IT Company in India, Best Seo Company in India
Quote this message in a reply
08-04-2017, 07:12 AM
Post: #10
RE: Very Rare Disease
(02-07-2015 09:42 AM)Paul S. Weidlich Sr Wrote:  Inclusion Body Myositis is a debilitating disease that deteriorates the skeletal muscles of the body. I realize this is disease is not related to AO, however, who knows? I was diagnosed with this extremely rare disease in 2003 and had to retire on disability. Presently I am unable to walk and my life consists of a mobile scooter. Something triggered this reaction in my body, could it be something from my Naval experiences. No one knows. There is no known cause and no effective treatment for this disease. Just thought I would put this out there and wondering if anyone else from BWN has anything similar to this?

Seems to be a very rear disease haven't encounter to hear about it yet.
Find all posts by this user
Quote this message in a reply
Post Reply 


Forum Jump:


User(s) browsing this thread: 1 Guest(s)