Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Bonnie You are so right, most of us have been where you are. It is frustrating- at best. I know you want treatment, and I know that you need to have the tests done so that your MD's can know what and how to treat you. As far as the work issue, call the Rheumi back, and explain exactly what you wrote to us about needing extra time to get yourself together, how difficult it is to walk, and the exhaustion, fatigue, and pain that you're experiencing. she needs to know. Ask her to take you off work and put you on short-term disability of 30 days. she can extend it if you need her to. One of the challenges with getting this diagnosis is that they do need to rule out MS, Lupus, Diabetes, neuropathy, the various forms of arthritis (I think I saw where there are around 1000 different types) and these tests will take several months to get done. Let her know that you seriously need her help in getting this done as quickly as possible, and that you feel like you're loosing ground daily. As far as the uveitis-- sarcoidosis is a major cause of uveitis. What your MD is seeing was described to me as "light shining thru a barn roof, where the dust particles can be seen floating in the space between the front of the eye, and the back of the eye." These are white cells- and signify active inflammation. I do hope that the Ophthalmologist is treating you with both Pred forte drops and Homatropine drops to keep the eye dialated, so that you don't end up with "acute glaucoma." This with a raised ACE level is significant for ophthalmic involvement, if you have dry eyes also-- then one of the easiest places to get a biopsy may be the lacrimal glands inside the eyelid. Chances are these glands are enlarged, and that would effect tear production. Do you have any lung involvement, or is your chest xrays clear? This is another quick test that might give them another relatively easy place to get a biopsy via bronchoscopy. Hang in there, and know that you will get the help you need. You have to keep telling yourself this-- and see this as coming true. You deserve to know what is happening, and why- and you deserve the best treatment available. Do take care, Tracie NS co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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