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
Posted using BlogPress for my iPad

Friday, January 28, 2011

Dr. House Speaks

I found Dr. House, in the form of a soft spoken blonde man in Commack, NY. He chose to be a general practitioner because he loved all of medicine, and could not limit himself to just a single field. My psychologist recommended him to me, as they were residents together. The guy was known as the 20 something genius during his residency, diagnosing patients with the most random, yet accurate things that the chief physicians couldn't diagnose. I had to give him a chance to figure this out. If anyone could solve my mystery diagnosis, it was him.

I provided him with the 4" stack of papers that is my "life" for the past year and let him attempt to figure out the issue. This was three weeks before we met.

"Well Miranda, you have me kind of stumped. I think I know what it is, but you aren't going to like it. I agree it's probably Stills Disease. For the first time in my entire medical career I actually used google to figure out a diagnosis. All signs point to AOSD."

Wow. I stumped Dr. House. He gave into the "it must be Stills" path that all of my doctors seem to be on. But it didn't come without question. He didn't like that my ferratin level was normal, and my fevers did not take on a circadian pattern, and that they never exceeded 101.5. yes, I had the rash, yes I had joint swelling, but it just didn't all fit.

He handed me a 30 page document on Stills Disease, written by a doctor John Cush of Texas, a Rheumatologist who specializes in AOSD.

I think I may know where to go next...

- Still Miranda
Posted using BlogPress for my iPad

Wednesday, January 12, 2011

The Kineret Dillema

Well, 12 days into shooting myself up in the thigh every morning with this bio drug called Kineret, and no improvement at all. Fevers are still here, so is joint pain, muscle pain, crazy migraines and the fatigue. Not even a slight improvement.

When I started to develop an upper respiratory cold, I called Dr. Horowitz, who advised that I stop the treatment immediately and deal with this cold before it gets so bad that I get an infection. She also mentioned that if the Kineret was going to help, it would have improved my symptoms within a few days, let alone almost two weeks. So I stopped treatment.

And as my luck would have it, I developed bronchitis. Yummy. Now bronchitis is something that I am very accustomed to, I have had to deal with it pretty much every winter of my life at least once a year. But bronchitis on bio meds is a whole other story. I was doing everything in my power to have it not turn into pneumonia, and it was damn close. You know when that stuff you cough up is bloody colored...sorry...but it was. It took a good week to fight that off but I did, and I stayed out of the hospital to boot!

Oddly, two days after stopping Kineret, I developed a very nasty injection site reaction. Bright almost purplish red rash, one where Monday's shot was, and one where Tuesday's was. Just to be on the safe side, I called up Kineret's hotline and reported it and asked for advice. It was itchy as hell and very hot to the touch. They advised me to take Prednisone and apply icepacks to the area. It wasn't a miracle cure, but it helped. It took a good week for the rash to go down, and I still have discolored skin from it. They reported both the bronchitis and the rash to the CDC.

Needless to say, it doesn't appear to be Still's Disease after all. This treatment helps in 90% of the cases when other treatment fails. So the big question remains: if it's not Still's than what the hell is it?

I need Dr. House!