Confused

[simone]

I had me 2nd appointment today with the opthalmologist, she said the uveitis was still there but was improving. My right eye is still slightly painful at times when I turn my eye. My optic nerve is inflammed in the right eye. My blood results were fairly normal except for something to do with inflamation and she has referred me to a rheumatologist. She ordered another blood test for bartonella henselae (catscratch disease) for me to have tomorrow. I am to return to see her tomorrow at noon. She wants me to have ct scan sometime tomorrow she says to rule out anything serious like cancer behind the eye (which she says is unlikely at my age). The ct scan worries me as I am claustraphobic but she said they might give me something to relax me. If they find nothing with the ct scan she wants me to have an mri. I had pictures of my eyes taken today and did some different test i hadn't had before where had to look at a + and follow it with my eye and she then printed off images of my eye. Pressure in my eyes are good. It's such a worry with all these scans etc I know there probably just looking at everything to narrow down what the problem is but it's scary. I heard her on the phone trying to organise for my ct scan for tomorrow and she said my patient bilateral something. They rattle off all this terminology that's known to them and i think they forget that we as patients are not familiar with it. I do ask what they mean and they do tell me but there's so much new information given in a hurry that it's all just too much and it gets all jumbled up as I'm not concentrating 100% because I'm still trying to put everything into prespective. I was at the clinic for about 4 1/2 hours they were extremely busy and there computers apparantley broke down this morning which set them back a couple of hours so it was a long day. She couldn't organise a time for the ct, she wasn't sure if it will be tomorrow or next wk? She told me to not take the dilating drops anymore for the moment. She should know more when I see her at noon tomorrow. This is all such a hassle as well as I have my 3 children at home on school holidays.

[Mike Bartolatz]

sorry your life is so hecktic and scary at the moment. it sounds like the test you had was an Optical Coherence tomography test to look for signs of Cystoid Macular Edema (oedema in the UK) and possible changes to the optic disc and optic nerve head because of the optic neuritis. she most likely will do some other tests blood tests to look for systemic causes of optic neuritis if the B henselae is negative. she is also very good because of what she is doing to figure this out in the proper order and is treating properly. did she mention oral steroids because of the optic neuritis or other medications? possible changes to the retina with blood vessels growing thre? did she mention pars planitis or intermediate uveitis being present, vitritis (lots of floaters in your eyes) was it bilateral uveitis that she mentioned? posterior uveitis or Pan uveitis?

I'll do my best to help you to understand much of this and will send you to information and websites that you can trust and that use MODERN corticosteroid sparing approaches to treatment to retrain the immune system to stop attacking the eyes.

with catscratch disease, saliva from the cat can transfer the disease to humans. the cat licks it's paws and then it gets on the claws which allow it to get into your bloodstream when it scratches you. there is a case where the saliva got into the eye from direct saliva to eye transmission.

because bartonella Henselae (SP) which causes cat scratch disease the bacteria that causes LYME disease can be mistaken for it, B Burgdorferi (sp). watch for symptoms of muscle pain etc as it can mimic arthritis. these things can also mimic sjogren's syndrome and Systemic Lupus Erythematosus and Multiple sclerosis and Sarcoidosis FYI. Severe Dry eyes and Dry mouth occur with all of these things
some have mouth sores associated with them as well. so make a list of your symptoms as they occur. we often forget things to tell the specialist so It is advisable to start a journal with symptoms etc. also take someone with you to take notes since you are having a difficult time taking all of this in which is NORMAL when we don't understand the terms the doctors are using.
there is a glossary of medical terms available through the Ocular Immunology and Uveitis Foundation http://www.uveitis.org located in the PATIENT information section of the site which you can download and print off to share and keep with your at your appointment to help you understand better.

please know that you are not alone and that I'll do as much as possible to help you through this.

Wishing you the very best,
mike

[simone]

Thanks Mike for your very helpful reply, it's much appreciated.
Yesterday I had my blood work done for cat scratch, they are sending it away and it will take about 2 weeks to get results. Afterwards I had my ct scan and chest x-ray which both came back normal, thank goodness there was nothing terrible found that was a huge relief. She did some more eye tests and then sent me home, told me to continue on taking the steroid drops every 2 hours. I go back to see her again on the 30th Jan. My eyes have really settled down, no pain or redness anymore, which is great. Just wait and see now I guess.
Thanks again for all your help.
Simone

[Rustyfj]

Yes been there this month eye pain no one know what it is like unless they have it