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:

Miranda,
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

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

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!

Maybe not?

I went back to the Rheumatologists office last week and met with Dr. Labarca, because my regular doctor is now out on maternity leave. She started asking me questions that I have answered thousands of times before. I asked her what was going on.

"are you married to this diagnosis?"

Not really. I knew I didn't fit some of the parameters of Still's Disease, especially since I lack an elevated ferratin level, which appears in 99% of patients with Stills. My fevers are also not as high as they 'should' be. She shared some of these concerns with me. Things just weren't adding up.

"I'm just not convinced it's Stills. And I'm not just going to settle, we need a definite answer. I'm not questioning Dr. Horowitz's ability as a doctor, but I'd like to double check."

I was fine with this. She ran a ton of blood tests as well as a specific test for genetic diseases that the lab had a very hard time finding a code for. She also checked my body over for trigger point pain, at which I jumped every time she hit a spot on my body. I was told this is body-wide myofacal pain. She wrote me a prescription for aqua therapy, aka, PT in a pool, which sounds quite awesome. Moving again will be nice.

So I'm starting kineret treatment, which should help figure out if this really is or isn't Stills. Tomorrow is the big day I get to start shooting myself up in the thigh. If it is Stills, I'll notice a significant improvement within a few days.

Improvement would be a great start!

D-Day: A real diagnosis

Well, all of my doctors have finally come to the same conclusion: I do in fact have Adult Onset Still's Disease. This was officially diagnosed by my new, and lovely rheumy, Dr. Horowitz in her office. I also have Antiphospholipid Syndrome, a clotting disorder that results in a lot of miscarriages, but that is a very easy fix when we want to start a family.

Since I knew that D-Day would be today, I aked my hubby to tag along for the apointment. Mom has been at my side throughout the majority of these countless appointments since April, but I felt it really was Matt's place to be there, so he could hear firsthand why his wife is pretty much a crippled, whiny mess all of the time. We gently held hands through the explanation of what is to come, to attempt to control this raging dragon inside of me.

Anakinra, or brand name Kineret, is a daily shot I will be injecting myself in the morning. With luck and persistence, this should put the Stills into a term of remission. When I told this to my Dad, he replied "that's so great that there is a cure..." of course then I had to explain the difference between remission and cure. In remission, the flares can come back at any time, unpredictable.

Dr. Horowitz is pretty hopeful that a 30 day course of Kineret will kick this into remission, but it is such an unknown disease that we just aren't sure. I have no idea how my body will react, or how long, if at all I will be in remission.

On a miraculous note, I went to LindenCare pharmacy (they pretty much do all the meds and injury related equipment for the MLB and NFL) and they managed to get my prescription special ordered and in my hand within 6 hours of me dropping of the script. Now THAT is service. They even stayed late to let me pick it up. Of course, I was so excited I decided to drive myself, which turned out to be the not best idea I've ever had, but I got it done.

After I had the medicine, I got back into the car to call Matt. I was all geared up.
"I finally have hope, the cure is in hand. This feels so damn good." I could hear him smiling back through the phone although I had clearly interrupted his xbox game. "I'm so happy baby, I think this is going to work out!"

Me too. For the first time since I can remember, I have a bit of hope, and that's all I really need to keep going.

I'm still here...meh.

So, after all of the late September hype, it's definitely NOT lymphoma, and appears to be Still's Disease after all. But from what I have discovered from talking to a number of people out there with AOSD, this misdiagnosis is soooo common, more common than finding another person with Still's actually! So the cancer is ruled out.

In some sick sort of way, I was hoping in a way it was lymphoma, so I could go head first into treatment then be ok, in remission. But its more likely I'm stuck with this disease that has me pretty much tied to the house 24/7, when I have a flare, which for the last month has been pretty much daily. Oh and god forbid i do decide to do something, I pay for it the next few days.

Like I just ended out canceling my long awaited hair appointment in NYC that was supposed to be tomorrow, because I know if I went, I wouldn't make it up to mid Hudson ny for thanksgiving. Unfortunately I still don't know if I'll make it. I going to try my hardest though. I know hubby is getting sick of going to family functions alone. I have a feeling it will be like that until I get an official diagnosis, although my new rheumy (yeah, didn't work out with Cohen) is very versed in AOSD and is pretty sure it's that. My entire blood panels have to come back from the infectious disease specialist (dec 5) and then I see the rheumy the following week.

If you do ever decide to switch doctors, make sure to get copies of your records to bring with you. It may be saving me another few months on getting an actual diagnosis. Yes, this rheumy thinks my old one was a quack too, so is starting over, but at least she doesn't have to retest me for everything. I need to save the little anemic blood that I do have left, right?

Oh, and as a side note, I have been on govt. Disability for two years now. How the heck do some of you work full time jobs while you feel like this? You are more stubborn than I am, which is saying a lot. Then again, through my multiple disabilities starting at 23 years old, I have slowly begun to stop being stubborn and start listening to my body and just speaking up. Just food for thought.

-MS