what is causing my orbital myositis?

[flynnl2]

my pcp diagnosed me with orbital myostis. i have had 2 bouts with it in the last 5 years. my symptoms include severe pain above my eye and forehead and extreme sensitivity of the eye. The areas above and below my eye, including my eyelid become extremely swollen. he treated me with oral steroids which seemed to take care of the symptoms but he does not know what causes it. i have suffered from seasonal allergies my whole life and my eyes become very irritated, a common symptom of seasonal allergies. i noticed that each time i developed o.m. i had rubbed my eyes over and over because they were irritated, does this have anything to do with it? please help!!!

[Quixotic1]

I don't believe minor trauma is a trigger for orbital myositis.  Has your pcp done a thorough work up for the many causes like thyroid disease, autoimmune diseases, infections both viral and bacterial and the main cause "idiopathic" of unknown "  (out of the blue) origin, or the idiots don't know the pathology, lol.

Beyond recommending this I don't know anything about the illness., Sorry, Quix

[LV159]

I have been diagnosed with orbital myositis twice, ten years apart, once at Columbia Prespeterian in NYC (while nine months pregnant) and once at Wills Eye Hospital in Philadelphia. Both times, after exhaustive testing, the results were that this is an auto immune disease that is "idiopathis", cause unknown.

I know that this is of little comfort, but I have not had a reoccurance since 1993. While 1980 an 1993 were very bad experiences, I cannot complain about the last fifteen years.

Find a very good expert in the field, online, and prepare in the event yo0u have another bout. Then, hopethat you do not.

Best of luck.

LV

[montypie]

Hello, I have had this condition for 15 years and i have also been told by the doctors that there is little research going on with this condition in the UK. I have also been in so much pain and also having to deal with the looks you get when your eyes look so bad is hard too but you have to carry on with life. I have been up and down the country (UK) trying to find someone that can give me a cure but the only person that understands me and is still trying is my doctor (GP). Having a Doctor that whats to help i think is the best way forward. She has screemed down phones, written hundreds of letters just to get help.  I Have never had any eye allergies before this eye condition started but i have always wore glasses and to be honest i did not wear then for a number of years and i think i strained my eyes for many years and was always rubbing my eyes too.  

Try and find a very good expert and keep positive

montypie