On one hand, "YAY", but on the other hand, well, refer to the title. I FINALLY have a "probable" diagnosis! After a bit of phone tag, my Rheumatologist at Virginia Mason, Dr. Stone, got hold of me this past Wednesday. She told me that one of my blood tests that was ran during a visit two weeks before (my myositis panel) had been completed and it came back "absolutely positive". My symptoms completely align, this blood test was positive, so all she needs now in order to be able to change my diagnosis from "probable" to definite is a positive biopsy.
We spent almost half an hour on the phone discussing what we needed to do immediately. I had an appt to see her in October but she told me that it was imperative that I fit in an appt with her next week, so, I am now seeing her next Friday, September 28th to discuss and begin treatment. She explained to me that before that appt she wanted me to have two MRIs done on my thighs and to get a skin biopsy done.
So, what is this diagnosis you ask? I'm so glad that I'm typing it to you instead of trying to say it to you...I have no idea if I'll ever get the pronunciation of this down: I (probably) have dermatomyositis. It's a rare (of course it's rare!) autoimmune disorder that causes skin rashes, weakens your muscles, and causes inflammation. The link I attached (I'm still patting myself on the back for figuring out how to do that) gives a pretty basic explanation of it. Of all the listed complications (I'm still waiting to see the weight loss from the dysphagia...hint, hint body!), the only one that I have yet to experience (knock on wood) is the calcium deposits. Oh, and my aspirating has yet to lead to pneumonia, whew!
Moving on down to the "associated conditions" part of the list is a little less than exciting. Raynaud's is the very first thing that I was diagnosed with. In fact, I'm now on medication for it because apparently when one's fingers turn blue multiple times daily it's not good for the long term health of said fingers. We then see 'other connective tissue diseases' for which I'm currently being checked for. Lupus and Scleroderma seem to be in the top running. Next you have 'cardiovascular disease' which I am being monitored for as the right side of my heart has been slightly inflamed each time they've done an echocardiogram. Fourth on the list is 'lung disease' which is also being investigated in me as my lung capacity is now at 60% for no obvious reason. And, last, but certainly not least, you have the increased risk of cancer. We will be doing scans, tests, and biopsies over the next few weeks just to make sure that can be thrown completely off the table (although I'm really not too concerned about that as I've been worked up and over for the past six months and no cancer has been found thus far).
"Preparing for your appt" and "Tests and diagnosis" are sections that I skip as I've been through all of that. Next up is the "Treatments" section! I assume that first sentence about how quickly starting drugs gives you the best chance is the reason that she is insisting that I visit her next week instead of waiting. While Dr. Stone and I didn't talk too in depth about specifics when it comes to my treatment, if you do any amount of research into this, it is very obvious that I will be starting a high dose of steroids. Hopefully that will be enough to significantly improve my symptoms, as the other drug therapies include chemotherapy and insanely expensive IV infusions...neither of which sound terribly thrilling.
So, this has all been a lot to take in. I'm seriously SO happy that we have a lead, something to try and fix, an explanation to all of the random things my body has been doing! I was kind of hoping it was all just a bad allergic reaction or some random infection that could be cleared up with antibiotics, not a chronic condition...but at least we're getting somewhere!! I've had my moments in the past few days where I panic a little. What if this isn't it? What if I have another connective tissue disease on top of this? What if my lungs never regain strength and the rest of my life is spent trying to keep them at 60%? What if there is a hidden cancer in me right now? What if I'm in that relatively high percentage of people who for some unknown reason develop cancer within the first three years? What if it's cervical cancer and I can't have kids? What if the treatments for this challenge my abilities to have kids? I could REALLY go on about all the "what ifs" all night long, but, in all reality, they aren't weighing too heavily on my mind. In fact, I'm pretty sure that Julie is more worried about me and this right now than I am!
Don't get me wrong, I have my concerns, but when it all comes down to it, it's all unknown right now so why worry? All I know is that right now I have a hard time breathing and swallowing and keeping my stamina up. So, I rest, I have water with me always, and I use my inhaler. I have two MRIs on Monday night, a biopsy or two Tuesday morning, and an appt in Seattle Friday morning. So, I'll take them each one day at a time and we'll just wait and see what happens.
No matter what, I'm Nichelle, I've got this!
PS-I hear people like pictures in blogs, so here is a picture of Julie (the one who seems to think that a chronic illness with a high association with cancer is a big deal and should stress me out) and I a few years ago at a Tri-City Americans hockey game together!
I'm glad you're handling it so well. I handled my chronic illness diagnosis okay in the beginning too. Then I learned its okay to cry whenever I needed to, much easier. Also, a passage of scripture changed everything for me. 3 Nephi 17 if you want to read it. My thoughts and prayers are with you. Let me know how I can support you through this.
ReplyDelete