Tuesday, February 22, 2011

A nice guy in Texas, confirmed my non-diagnosis.

I did a little more research on AOSD and realized that pretty much every scholarly article written in the last 15 years about Stills was written by Dr. John Cush. So I located him, and google did me a favor by putting me in touch with his assistant, Laura.

I told her my struggle for a diagnosis, and that my doctors were diagnosing me with AOSD for lack of another idea, although some weren't 100% sure. I asked her if I could make an appointment, I was willing to travel to Texas from New York.

"of course you can, and he takes your insurance, but I think I'd rather email him first. Can you email me all of your symptoms, your blood work, your doctors notes and I'll see what I can do. I'd hate for you to travel all the way here for nothing."

So I sent him this,

And this

And the other required information. He was kind enough to go over all of my notes, blood panels, and doctors notes. Two days later I got an email back from him stating:

On Mon, Feb 21, 2011 at 10:25 AM, john Cush wrote:

I have read your notes and seen the pictures.
I think you should be evaluated by others in your area before you venture all the way to texas.
I agree this does not seem typical of AOSD.
I would be concerned for lupus just based on your facial rash alone.
Please consider seeing Dr. R. F..... at Northshore University Hospital Or Dr. B. G., office near Babylon. Both are excellent rheumatologists.
J Cush, MD

So there is no need to go to Texas after all. It's not AOSD if Cush said it isn't.

So what is it?

- Still Miranda
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