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!

The sleepless fire-breathing dragon

Well, to put it really nicely, the last 2 weeks, since Dec 11th (coincidently the day after I took my first dose of Kineret) has royally sucked. And by sucked I mean like close to having spinal surgery with major complications post-operatively, which I have experienced twice before. I think I'd rather have another spinal surgery than go through what I'm going through now.

I only ended up taking one dose of Kineret, because I miraculously found that my big toe had managed to become ingrown and infected seemingly overnight. I knew it was quite dangerous to have any type of infection while on an immunosupressant so since things like this ONLY seem to happen on weekends, I called my Rheumys emergency line and the doctor on call got right back to me. Dr. Labarca, a very sweet, concerned woman, advised me to stop the Kineret immediately and get to a Soctor, preferably one that could take care of my toe immediately, and get on some potent antibiotics. Long story really short, I found a podiatrist that took me in immediately, took care of my toe, and got me on antibiotics. I thought I was in the clear.

The following day, Sunday, I woke up with a 102 fever, shaking violently. This is atypical of my normal stills fevers, which always appear in the afternoon and generally never go over 101. No matter how much Tylenol I took, the fever would not go down. So I called Dr. Labarca back. She was perplexed and said if the fever goes higher, go to the ER. Also she advised me to see Dr. Horowitz the following day.

I saw Dr. Horowitz the next day who was confused as ever, because my fever hadn't broken yet. She wrote me a script for indocin to keep the fever down and told me not to go back on the kineret form14 days from when I started the antibiotics, which coincidently will be Xmas day.

I did end up going to the ER, per Dr. Horowitz last Thursday. My fever would not go below 101 and she needed to make sure that there wasn't an underlying infection causing the fever, which was nonstop, atypical of my stills fevers. So Matt took me to the ER, and we waited for four hours to get into a room. They (meaning four doctors) checked me over and said they could not find cause form the fever, so they sent me home. A lovely waste of an evening.

For the next almost two weeks, the fever has yet to break, although i have gone as low as 99.5, and my joint and muscle pain is actually worse than it's EVER been. I have been completely unable to do anything, including sleeping regularly for this long. I wake up at least three times a night for over an hour at a time (and I take Lunesta, vallium, and Zanaflex before bed!)

It's been a miserable two weeks. And of course the timing of right before the holiday could not be any more convenient. I go see Dr. Labarca tomorrow to clear me before I go on the kineret again. We will see if she can calm the fire breathing dragon and put it to sleep.

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.

\M/ Odd Man In \M/

I am the odd man in. Not out, I'm certainly not excluded. But sometimes I wish I had a choice to be excluded so I didn't have to make choices that will ultimately make me hurt.

Like tonight, for example. My husband is in an amazing rock band, named Odd Man In, and their CD release show is tonight, in Brooklyn. Come hell or high water, or Still's disease, I'm going to be there. It's a huge deal. Tons of press, labels, and promoters will be there. They are headlining six bands and have aptly named the show DeathMas 2010. It really is going to be a great time.

Unfortunately, when you are dealing with a chronic illness, that happens to be flaring NOW, it makes enjoying things like this, things that if I weren't sick would be a thoughtless "let's got!" I have had to worry about for the past week. I literally haven't done anything for four days, outside of a doctors appointment, to conserve my energy. I know it will be very worth it, but I also know that leaving the house at 5pm, and not getting home until 3am the following morning will be something I'll be paying for, well, for a good week.

But I'm so excited I am doing my best at ignoring the pain I am feeling (including the fact that I keep getting sharp pains in my heart again, which I know is pericarditis acting up again). I'm going to get dressed up, wear heels, and put makeup on. I'm going to be the old me, the one before Stills got me.

And just for a night, I'm going to rock hard, and forget what it's like to have a chronic illness!

\M/