oz-kate
06-06-2007, 03:22 PM
I am greatful to have found this site but so sad the many out there suffering. For aprox 20 years, have had this dreadful monster "they" call OM orbital myositis. Is there anyone else with this form of myositis I really hope not but if there is please PLEASE reply. Feeling very alone.:(
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cookingmom
06-20-2007, 11:06 PM
oz-kate,
I do not have this but I just wanted to say that I am sorry that this seems to be a long standing problem for you. My prayers are with you. B :wave:
I do not have this but I just wanted to say that I am sorry that this seems to be a long standing problem for you. My prayers are with you. B :wave:
betty917
08-09-2007, 12:59 PM
My left eye was totally swollen I could not open it at all.
I ended up in the hospital in May for 5 days of antibiotics & then Steroids.
I have been diagnosed with an Orbital Pseudotumor, and now also Myotosis.
It is very frustrating trying to deal with something like this when there is no cause or reason.
I was doing fine until last week when the left eye started acting up again. Back to the city and Wills Eye Hospital, back on steroids & pain meds again. I would really like to know what if anything causes this troublesome condition.;)
I ended up in the hospital in May for 5 days of antibiotics & then Steroids.
I have been diagnosed with an Orbital Pseudotumor, and now also Myotosis.
It is very frustrating trying to deal with something like this when there is no cause or reason.
I was doing fine until last week when the left eye started acting up again. Back to the city and Wills Eye Hospital, back on steroids & pain meds again. I would really like to know what if anything causes this troublesome condition.;)
Duncanguy
11-25-2007, 05:50 PM
There is a lot of "alone" here...but, a question, have you ever been tried with ornithine ketoglutarate? Duncanguy .PS. Heatshock ptotein (helps make the oxidation process inside mitochondrial "energy furnace" work) HSP and the transferase HSt1(controls portal into mitochondria from the cell surrouding it). I'm only noticing generalities...but, if your specialist notices similarities, DMSO assists or substitutes better than naturally in both those areas and is non-toxic.(Your doctor probably would argue this point) The ketoglutarate would moderate symptoms since it inhibits blood ornithine, but it appears this blood ornithine is a symptom...not a cause. Anyhow I am not a doctor...do whatever you have to, but use the web and research your problem. Del Crow (Duncanguy) delcrow@shaw.ca
Maggie312
01-06-2008, 10:56 AM
I am greatful to have found this site but so sad the many out there suffering. For aprox 20 years, have had this dreadful monster "they" call OM orbital myositis. Is there anyone else with this form of myositis I really hope not but if there is please PLEASE reply. Feeling very alone.:(
I just had an MRI of the brain and orbits on Friday and the radiologist wrote it could be "orbital pseudo tumor" or "orbital myositis". I have had symptoms in my right eye ( eye bulge/double vision/now headaches) going back at least 1 year. I saw an eye doctor Friday afternoon and am undergoing lab tests tomorrow for Graves Disease. Not sure yet the true diagnosis and/or treatment plan or prognosis. It is scary and depressing and I am sleeping more just to avoid the headaches. You are certainly not alone!
I just had an MRI of the brain and orbits on Friday and the radiologist wrote it could be "orbital pseudo tumor" or "orbital myositis". I have had symptoms in my right eye ( eye bulge/double vision/now headaches) going back at least 1 year. I saw an eye doctor Friday afternoon and am undergoing lab tests tomorrow for Graves Disease. Not sure yet the true diagnosis and/or treatment plan or prognosis. It is scary and depressing and I am sleeping more just to avoid the headaches. You are certainly not alone!
amina39
03-03-2008, 08:32 AM
my name is amina, i am 39 yrs old and have suffered for 20 yrs like yourself, with orbitol myositis. I have been on long term steroids ever since. I am currently on homeopathic remedies for inflammation. I am also looking into the link maybe between this and Behcets syndrome which my brother suffers from.