Where to turn from here
My wife who has been a very active mother and wife started in August of 2012 with a case of scleritis in her left eye. When we went to see the eye doctor he diagnosed it as scleritis and placed her on drops and indocin. The eye cleared up in a few days and everything was back to normal. He told us then that if it returned we should look further because it could be a sign of some auto-immune problem. In January it returned with a vengeance and she was placed on high doses of prednisone (80 mg. a day). The eye seemed to improve quickly and we were in hopes of everything going back to normal. On Jan. 28th she woke up with her feet and hands numb and tingling. The condition only grew worse over the course of the day and by late afternoon she was completely exhausted from doing nothing. The condition only grew worse and on Wen. 30th we ended up at the hospital because she had gotten so back she could hardly function at all. The hospital ran ct scans and blood work and could not find an answer and sent her home with antibiotics for a urinary infection. They suggested going to a neurologist which was not an easy task. We called every neuro group around and could not get an appointment for several weeks. By nothing short of a miracle we got an appointment with the doctor we wanted to see and saw him on Feb 7. He ordered a MRI which we found on a return visit this past Thursday showed no lesions and the doctor said he highly doubted it was MS and said only that she has some systemic auto-immune disease and has set an appointment for 8 weeks. My wife is getting worse everyday and can barely function with new things going on everyday. We have heard all the advise from friends and family and all the story of diagnosis with similar symptoms to my wifes but at the end of the day that is no help to us and we (mainly I) have grown very impatient. I guess the reason for my long babbling is to see if anyone on this forum has started with scleritis and has progressed into like symptoms as my wife. The doctor is suppose to be contacting the NIH for some answers and at this time is talking about some type low dose chemo for treatment. Any help will be greatly appreciated but if all you have is negative comments keep them to yourself I have had more that enough of them. Thanks for taking the time to read.
Re: Where to turn from here
Hello and welcome. I'm sorry for your wife's problems and your shared worry. Has she seen a rheumatologist &/or had all the usual auto-antibody tests for conditions with which scleritis is associated? For example, I've seen RA, lupus, giant cell arteritis, and Wegener's listed---but there may be more, I don't know (sorry).
I recall someone on the lupus board (last 6 months or so?) struggling greatly with optic neuritis, which made her doctors also consider giant cell arteritis and something else. That may/may not be helpful reading...
You could try an "Advanced Search" and "Find a Board" (hyperlinks in blue bar above) to search for scleritis and the AI's you want to read more about.
Another path might be "super eye specialists", like Wills in Philadelphia; and there are other highly rated eye institutions in other parts the country. Or teaching hospitals, like those known for diagnosing the hard-to-diagnose (Mayo, Cleveland Clinic, etc.). If any of her doctors know doctors at such places, maybe they could reach out for you.
I wish I knew more (lupus but no eye issues). I hope others chip in soon. Sincerely, Vee
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