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

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

Part One. Commencement of the Finale

Although I suppose that's a little morbid, but it's true. In any situation, not only the bad ones.

It's always the beginning of the end.

Today just happens to be the day in which I accept the fact that I am facing the toughest battle of my whole life. I actually took a deep breath in and allowed myself to be vulnerable.

I looked into my mother's teary eyes and said "I know what it is, and it's cancer."

"I know," she cried.

Up until about 10 days ago I was pretty convinced whatever was wrong with me was a manifestation of a juvenile disease, come alive again in my adult life. The Rheumatoligist called it AOSD, or Still's Disease, a systemic rheumatic condition that is debilitating and incurable. It can be controlled with immunosupressant drugs and whatnot, but there is no cure. It would be something that would have to be dealt with for the rest of my life. Severe joint pain, fevers, rashes, and other seemingly annoying conditions such as pericarditis and liver damage, and a lot of weight lost, which I wasn't exactly upset about. And I had it all, down to the diagnosis of pericarditis last Sunday with my trip to the ER, instead of what was supposed to be a ride home from one of my best childhood friends weddings. When I missed that wedding, one that I had been anticipating for so so long, I knew I was really sick. I had always said that "I wouldn't miss Angela's wedding if my life depended on it." Funny things happen when your life is really at stake however. Things like weddings seem to take a back seat to a pericardial sack not rupturing on the dance floor.

Last week, after complaining to the doctor about my abdomen feeling as if it's going to fall out, he laid me on the exam table and touched my spleen. "well, it's gotten larger I believe." it had showed some enlargement on my sonogram 2 weeks prior, but that was before I could even feel it, now I actually wanted to rip it out. Then he left the room to go get my new blood workup, only to reemerge a few minutes later, white faced, as if he'd just seen a ghost. "I think at this point it would be best if we send you to a oncologist, just to rule out lymphoma. It's unlikely but i'd like to get you in there sooner than later."

Fair enough. So I called the referred doctor and after reading the booking nurse my supposed diagnosis and specifically asking her to see dr.x, she said in a sweet, yet sound enough voice to tell me "well that specific doctor is booked for a little while longer than we'd like to wait to see you. How is Monday for you at 3pm with Dr.Y?"

"Monday is great, I'll see you at 3pm." It was currently noon on Friday.

Still's, from what I can gather, doesn't progress this quickly. Whatever this beast inside of me is has dove deep in me, taken hold of my guts, and as Ozzy put it "is going off the rails in a crazy train." it's the best way to describe it. Completely out of control. Two weeks ago I had joint pain, now I'm headed to the oncologist tomorrow, fearful that my spleen is about to rupture. And the weirdest part is that all of this started because of a slight increase in my CRP level in my blood work, at my checkup.

Whether it is Still's or my gut feeling is actually correct, I've got a hell of a trip in front of me. As I said to my greatest friend in the world, Rachel, the other day, "at this point it's either a very rare, painful, incurable disease that I'll have to deal with for the rest of my life, or it's just your plain old, run of the mill cancer. Either way, it's going to suck pretty badly."

I don't plan to post every day, or some days I may have so much to say that I post three times. Guess you'll just have to wait and see. I don't know where this is going, and I would very much like to keep it that way, because I don't know where life is going. But then again, does anyone really?

What I do know is that if there really some kind of point, some purpose to life, mine specifically, I'm pretty hard pressed to figure out exactly what that is in a very short amount of time. Maybe you can help a gal out?

-MS