More info on my condition.

[Keegan]

As stated in my intro, cause still unknown. I live in Utah, and moved into a newly built house five months ago. Seeing doc again today and i'll be asking more question after doing research myself.

On my last visit, my doc asked me lots of questions like whether I had cats or whether I eat raw meat. Which the answer is no. I predict all my current test will come back normal, but after researching a little bit I would not be shocked if I had Ankylosing spondylitis, because I have so many of those symptoms (hip and back pain that gets better with activity, weight loss and Uveitis). Now, they might of asked about it before, but I've been so stressed out about all of it that I can only now recall having these symptoms.

[Mike Bartolatz]

he probably did an HLA B27 gene test in his labwork. that might be what is linked to this. in Utah there is an excellent occular immunologist that you might consider getting invovled down the road, DR Alber Vitale. he will know what tests and how to treat whatever is the cause of your uveitis. to confirm ankylosing spondylitis, he might order an Xray of your back and pelvis for example if you mention this to him. you may also require a Rheumatologist to get treatment. if it is the HLA B27 gene then once the major inflammation is stopped with steroids, a trial of an NSAID like Celebrex, dolobid or naprosyn could quiet things down in your eyes and your back. the key is to quiet down the systemic inflammation so that the eye doesn't get inflammed again. it takes several years to get everything controlled so try to be patient ( I know how frustrating this all becomes).
Dr Vitale's contact information can be found at http://www.uveitis.org in the PATIENT information section of the site on the USA Specialist list.

hope this helps,
Mike

[Keegan]

Just another update. Saw doc a couple days ago, and I'm happy to say my condition is improving and responding well to drops. Still waiting for some lab results to determine cause. Doc decided not to put me on oral steroids because my eye is responding so well to drops. Plus, not all my labs are in yet. However, some of my labs were in and I tested neg on the HLA-B27, but my doc says that does not prove or dis-prove anything, and suggest I see a specialist to get more testing based on my symptoms.

Also, doc thinks I will get 100% of my vision back although it's still really cloudy when looking through that eye.

[Mike Bartolatz]

glad your doctor is willing to send you to an expert, DR Vitale is the expert to see in Utah. hopefully this will be successfully treated quickly and that it won't return. just know that you are not alone and we are here to help when you need us.

wish you the very bes,
mike

[Keegan]

Just another update:

I still have cloudy vision. I’ve been tapering off drops, and I have noticed that my vision is better in the morning before I start putting drops in and worse at night before I go to bed. I also have had good and bad days where I’ll have to increase drops one day then decrease drops the next due to painful flare ups. Doctor says me eye is like a snow globe, and with the combination of drops, that’s why my vision still sucks. They say it could still take several more weeks before it completely clears up. I can truly say that this has been the worst experience of my life, but the doctor tells me that vision will come back, so I guess I trust them.

[Mike Bartolatz]

I thought they were sending you to see Dr Vitale in Salt Lake City for a consultation. do you have additional inflammation of the vitreous to explain the 'snow globe' going on? have they mentioned a steroid injection to tissue surrounding your eyes to stop the inflammation? how is the pressure inside your eyes?

don't stop the drops cold turkey whatever you do. you have to slowly taper off of them very slowly.

wish you the best,
Mike

[Keegan]

Doc told me to call and get into him myself, and if I need a referral then doc would give me one. I just have not got to it yet. But I think I’m going to call tomorrow. Last time I went in, the doc told me my eye was clearing up wonderfully, that pressure was good and told me to slowly tapper off drops when my eye would allow it. And just now, I have noticed a Stye on my lower eye lid and will be calling my current doc in the morning regarding that.

[Mike Bartolatz]

good make the call to DR Vitale. it will probably take a couple of weeks to get in to see him with the Holidays etc.
I would think that your current doctor would give a bit more guidance as to when to start the taper off of the steroid eyedrops too from what he sees inside your eyes. starting a taper too soon will often cause the uveitis to return.

wish you the best,
Mike

[Keegan]

Ok, it's been a while now, but I'd like to update everyone on my jorney with my never ending eye condition. I won't rehash all but will kind of start were I left off: I've suffered with different forms of uveitis (even optic neuritis) for over 3 years now. I've seen multiple eye docs, done pretty much every test known and still unknown as to what's causing my condition. Currently, pretty happy with the my current doc now. For the last 2 years my condition has stableized to one form pretty much (idiopathic, pars Planitis with macular edema). I'm currently, and have been for over a year using ozerdex implant injections, and they've worked really well. However, the longer I've been using this drug, the less longer it works. Currently, one injection every 3-4 months.

What I can say is this condition has effected my life dramatically. It led to an alcohol/drug problem that cost me a marriage. That combined with my condition has also effected my ability to hold a job. I've had numerous nervous breakdowns and suffer from depression which I'm finally getting treatment for. That's really all for now. Feel free to ask me anything about it

[vancouver]

Thanks for the update, keegan. I wish you well.
These updates are very interesting.