Did you know that there's actually a diagnostic code in medicine that more or less translates to "I have no F*cking clue what you have, but your tests and physical examinations show something's there?" Yep. There is. I found out today, that's what my medical chart says. Well, that, or my doctor's tech is an idiot. Or, that's the only way my doctor can get paid. I honestly have no clue. Which is scary. I could almost swear that during my last visit my specialist told me that my autoimmune disease (I remember that much, since all of my visits to her and at least 2 visits to the doctor who referred me to her told me I had an autoimmune disease) was mixed connective something... The only one I can think of (and any search engine comes up with is Mixed Connective Tissue Disease/Disorder). Combine that with the fact that she specifically mentioned the fact that many of my symptoms matched that of Lupus and Polymyositis (two of the triad for MCTD diagnosis), without coming up with positive test results for either...My memory may be a bit hazy sometimes (stress induced, sleep deprived, panic induced, drug induced), but when I remember something, I can recall EVERYTHING--from tone inflection, who was wearing what, right down to the tiniest detail. Ask my mom. It pisses her off when I do that because usually it's how I win the rare argument with her when it's not a matter of whipping out my laptop or cell phone and bringing up my ninja cyber research skills (or my library). But I'm digressing.... back to "practicing."
I'm waiting for the results of an enzyme test to find out if I can start azothyaprine treatment. What is that besides probably spelled wrong and a generic drug? It's a wicked immunosuppressant, commonly used for kidney transplant patients, but also used to treat many autoimmune disorders when steroids either aren't an option or have failed. In my case, it's a bit of both. I'm not entirely sure I would still be here if I wasn't put on steroids so many times over the last decade. As much as my last rheumatologist screwed up, putting me on steroids to treat fibromyalgia and severe bronchitis actually helped slow down the progression of my disease. Steroids did come with a host of serious side effects--extreme weight gain (I went up to 297lbs at one point), extra stress on my lower joints, worsening stomach problems, even lower vitamin levels, tooth and gum problems, and high cholesterol. So azothyaprine it is. Which comes with several pages of warning on its own. Including blood tests to find out if I can take it and based on the labs, what the recommended dosage should be if I can take it. After that, regular blood tests to make sure it's not killing me. (And making sure the disease isn't affecting any other organs.) Except the results still aren't back yet and instead of them flagging the test, calling the script in, then calling me, I have to call the office, then they have to call the pharmacy.
So how did I find out about the diagnostic code? Well, I have several check ups with my other doctors in the near future, so I wanted to make sure I understood I heard my rheumy correctly, and save my other doctors correctly and get the diagnostic code. They can call and verify if they wanted to--the more my doctors talk to each other and cooperate, the more they understand my illnesses, the better they can help me, and I'm more than perfectly fine with that. Until the tech picked up the phone, gave me 2 codes and 2 diagnoses. Then I got upset. MCTD wasn't one of them, but the I have no idea diagnosis (which, if you enter it into any search engine, it gives you the diagnostic code, information about rheumatoid arthritis, ads, and 3 q&a forums that say the same thing--doctors have no clue. It doesn't even warrant a Wikipedia page!! That's how you REALLY know you're screwed--when something doesn't have a Wiki page. The second? Polymyalgia Rheumatica. Seriously? I was referred to this woman 3 months ago because my last specialist suspected I may have had that or Still's Disease. In less than a week, she ruled it out--yes, I had an elevated ESR &CRP, but X-Rays showed nothing, I had a fever, extremely swollen hands, feet, lymph nodes, other joints ached, the neck pain was arthritis due to a broken neck, am not elderly (which 98% of the patients are), of Scandanavian decent (most are), my symptoms did not go away on steroids, I do not have blurry vision, vascular problems, and nothing else to indicate I have it except hip pain. Yet, there it is, in my chart, as a diagnosis.
Neither codes/diagnoses are autoimmune disorders, neither fit my symptoms, yet I'm already on 1 medication that kind of works, and am waiting for results to start a second, more powerful (and seriously scary) medication for an autoimmune disorder that--according to my own doctor's office--I don't have. There's no denying what my test results say. There's no denying that there are real, physical symptoms during an exam. As more tests came up negative, I was more hopeful that my doctors were closer to a diagnosis, but they became more stumped. Until I heard MCTD. All the symptoms fit perfectly (except the malar rash from Lupus). Now I'm even more confused. Do I take the immunosuppressants, knowing that they'll probably work, knowing that even though life will drastically change again, turning me into one of those OCD germophobic crazies I can't stand, but never really find a name for what I have, or refuse to take them and see how much worse this can get because once again, a doctor screwed up paperwork? I guess that's why they call it practice....
No comments:
Post a Comment