This Morning I had my 3rd appointment at my Rheumatologist’s office. Dr. L is the newest member of my healthcare team and I was sent to him by my Hematologist, Dr. M and my PCP, Dr C. He dropped a little bit of a bomb on me this morning by saying we couldn’t officially call it Lupus on paper because of how my lab work is presenting. We know it is Lupus, all of my doctors know it is, but on paper for now it is coded as 710.9- Undifferentiated (or Unspecified) Diffuse Connective Tissue Disease. He went on to say my symptoms and signs are highly suggestive of Systemic Lupus and suggested I bring on a Dermatologist to get my butterfly rash and other rashes biopsied if we want a conclusive diagnosis of SLE. For now though we are calling it Lupus in appointments and we know it’s Lupus, but to my insurance company because they like to have things backed up by positive lab work I have UCTD. This doesn’t change much. He will still see me regularly, I’m still being treated for Lupus, I’m still on Imuran and he took over my Plaquenil prescription from Dr. C.
He did go over some of my labs with me and what I learned was my ssDNA IgG Antibody was moderately high, but not high enough to declare it high enough for a positive SLE diagnosis. My IgA immunoglobulins are very high, and one of the things that typically makes this high is Lupus and other autoimmune responses. Normal range for IgA is 69-380 set by the lab that ran these tests, My count came back at 522. There are a few other things that can cause this value to be high such as such as cancer or cirrhosis of the liver or long-term hepatitis, but we are pretty sure none of those apply. Why can’t that value be used to support my diagnosis of Lupus from an immunological stand point to the insurance company? This is so frustrating!!!!
Dr. L wants me to see a Dermatologist. He said if we want a conclusive diagnosis of SLE one way to locate the antibodies may be through a skin biopsy. I’m not sure how I feel about having a chunk of my skin removed in pursuit of the elusive antibodies. The rashes I experience are on my face and arms. What if we don’t find the antibodies on the first try? How many times do we biopsy before we give up and just wait until they accumulate enough in my blood stream to count as positive enough?
How long before I’m sick enough to make my insurance company happy? That is what this boils down to. I’m just starting to get Lupus is how it appears to me. I’m early in the process and not sick enough to really count as far as insurance companies are concerned. Why can’t the diagnosis of Lupus by not one of my doctors but 3 of them and the agreement of a 4th be good enough to make the insurance company happy? Nothing has actually happened on this front, Dr. L is just being an amazing doctor and trying to stay in front of any issues that may occur with them. I know this. It still frustrates the hell out of me.
I spent several hours after the appointment being various levels of upset and angry. I have cried, yelled, cried some more and went through moments of wanting to move my appointment with Dr. C from Friday to earlier in the week. That won’t really accomplish anything other than he’s a comfortable person to talk to, would get my referral to the Dermatologist in place a few days earlier, and would get my INR check out of the way for the week. There’s no real reason for me to move it, but the desire to do so is there. I won’t do it, all of this can wait until Friday and hopefully I will be calmer before then. Today’s appointment left me feeling powerless again. Even after I realized I didn’t have to get the skin biopsies unless I chose to, part of this whole process makes me feel like I’m not in the driver’s seat anymore. In 6 short weeks Dr. L went from yes this is Lupus to we know it’s Lupus but we have to put something different on paper. Briefly it felt like he was giving up on me. He wasn’t otherwise he wouldn’t have continued my Imuran nor took over my Plaquenil prescription but the emotion was still there.
After I got home I logged on and checked what had been added to my file from the appointment, One of the notes that got added to my file from the appointment was Dermatitis from drugs and medicines taken internally. What the hell? First of all. NO. These rashes and skin irritations predate all the medications that I am on. They have been diagnosed as typical rashes caused by Lupus, by none other than Dr. L himself in the past AND his PA… Not to mention Dr. C and Dr. M. So no… No they are not Dermatitis caused by my medications. I’m assuming drugs is being used to categorize OTC medications? I am not a druggie. I have given him no reason to think I am a druggie and he has given me no indication that he thinks I am an addict. I am, however, the child of an addict and wordings of things like this do trigger negative responses from me. I had almost made it back to a happy spot in my day but this leveled me. The tears came back, my stomach flipped and I am pretty much done for the day. I’m going to show this to Dr. C on Friday. This my friends is part of the reason I don’t like seeing multiple doctors. I’ve already had this talk with Dr. C. Now I’m going to have it with Dr. L. I have an issue letting people in. This is part of the reason why I haven’t brought this subject up to him and now it seems maybe I should have. I know I mentioned my dad was an alcoholic and an addict but I don’t think I went into the emotional turmoil that it causes me. So I’ll talk to him about it when I return to the 6th floor office in July.
I had high hopes that today was going to be a great appointment. That today was going to be another step in the forward direction and that it was going to be another step to building trust and a lasting relationship with my doctor. Some of that happened. He did prove to me he’s not just hanging me out to dry. He proved to me that he’s willing to do what it takes to get me to prove the diagnosis we know is there. It’s just a frustrating process. Leave it to my body to do things backwards. I should have known this would be the case. Over the years I have had some odd ball medical issues. Of course… Of course it’s going about Lupus backwards as well.