First of all, I'm new to this forum so hello to everyone ! I have been having headace's, blurred vision, disorientation, nausea, forgetfulness and so my dr. sent me to have an MRI, an eye exam and to the neurologist. The eye dr. was first and he found that I have swelling around my optic nerve. It kinda scares me to think what could be causeing the swelling. Has anyone ever had this?

Welcome to the community! Sorry, I have no answers for you, hopefully one of the others will post who has more experience. I certainly can understand why you are concerned. That would be a scary set of symptoms to be dealing with. Let's hope your doctor will figure it out quickly, and that it will be fairly innocuous to deal with.
In the meantime, though, keep us updated on what is going on. You will find this a wonderful community to come and chat with. Even if no one has an answer for you, at least we are hear to listen and sympathize.
Hugs,

Welcome to the forum, skmklal. I don't have any answers for you either but maybe somebody else will. Maybe someone could direct you to a specific forum on here where the people there might have more answers for you.

Hi skmklal and welcome. I don't have any specific answers for you, but somebody should be along that can help you.

skmklal ...

I don't think ANYONE here can tell you what is going on (unless there is a psychic neurologist lurking this forum). You have only been to the eye doctor -- you must next have the MRI of your brain and then the results of the MRI and the eye exam will be sent to the neurologist and HE will be the one to make sense of it all. I know it is frustrating to have to wait for a diagnosis. If you were hospitalized, all these tests would be done in 2 days at most, but when outpatient, you wait for your appointments.

There are many conditions that cause optic nerve inflammation and swelling, and if the opthomologist could have made a diagnosis, he would have, but all he could to is tell you what he found. Once the neurologist has the MRI and the Opthomologist's report, he will have have the clues to start to put it all together.

I hope that whatever it is, that it can be resolved by your doctors. In the meantime, I know that every last one of us can understand how you are feeling. It is scary, so scary, to not know. I hope your waiting time will not be long.

In the meantime, if any of your symptoms become markedly more severe, I would advise that you go to the emergency room.

Teri

Kyla, I know how hard it is to wait on a diagnosis. Seems like your doctors are moving pretty fast, though! Hopefully no news IS good news, but just remember, no situation ever improved by worrying about it. Just take one day at a time, and come here whenever you need a good stiff dose of sympathy! Someone is always around to administer a big cyber hug!
Hugs,

Hi and welcome,

I am being treated for a pseudo tumor/orbital inflammatory disease. I have eye problems for several years. In the beginning I had a very noticeable droop to my left eye and then it went back and forth from right to left.

I was diagnosed with ocular myasthenia Gravis. One positive test and one negative. Well then that went away and I have no problems with that.

Then my left eye began to protrude and after many eye inflammations and blethritis and many MRIs they found a sizable tumor (?) behind my left eye.

It is benign and these tumors do not become cancerous. I am going to Mayo in 10 days and hopefully they can get to the root of the problem.

My vision changes on almost a daily basis and after months of high dose prednisone the tumor is unchanged. So they are thinking perhaps it is something else. I also have frequent headaches, mostly pain behind the eye when the pressure builds. You stated that doctor said swelling, mine is called enhancement. Wonder if they are the same but worded differently?

I would definitely pursue it and I am not trying to scare you. I have had this problem for a long time and I am doing ok. I know it can be treated, just have to find the right doctor to pinpoint it.

Here is what my last MRI report states. Maybe your doctor has mentioned some of these things to you or you can relate to something it says.
I had to look up most of what is on the report so that I could understand what everything meant.

REPORT:
There is proptosis of the left orbit. There is mild enhancement of the
intraconal retrobulbar fat with prominence of the vessels suggesting
increased vascular flow. There is prominence of the superior orbital vein
and sluggish flow could not be excluded. There is enhancement beneath the
sclera which is felt to be outside the orbit and due to prominent vessels.
Uveal scleral thickening is less likely.
There is also mild enhancement of the left optic nerve which is attenuated due to the proptosis.
The lacrimal gland is mildly enlarged as compared to the right but there are no enhancing masses.
The optic chiasm is unremarkable.
There are no enhancing brain parenchymal masses. The ventricles are
midline with no mass effect or shift. There are small foci of abnormal
increased signal in the white matter at the corona radiata which could be
due to mild chronic white matter ischemic change. This was seen on the
previous study and is unremarkable. There is no evidence of acute
ischemia.

IMPRESSION:
(1) Left orbital proptosis with mild enhancement of the retrobulbar fat
with increased vascular flow which could be due to inflammatory orbital
pseudotumor but lymphomatoid granulomatosis or lymphoma is not excluded.
(2) Prominent left superior orbital vein which could be due to sluggish
flow.
(3) Postinflammatory changes with a mucous retention cyst in the right
maxillary sinus, unchanged from the previous study

Only sounds scary until you look everything up. I hope something on here can be of use to you. Again, it is not as bad as it sounds and it is treatable.

Good luck and God bless,

Judy