12 Vials of Blood Later

I had my first appointment with the rheumatologist today. Dr. A is a very nice man who asked me a lot of questions and wrote a lot of notes down during our 35-minute visit. I only had to wait about 5 minutes in the waiting room, and Dr. A knocked on the door to see me within two minutes of the nurse finishing up with my vitals. (My pulse was 80. My BP was 112/72.) The exam table was low to the ground, so I only needed to seat myself on it. (Yay to them for furnishing the room appropriately for patients with joint pain!)

The Reason for My Visit

Dr. A had everything in front of him that my primary care doc had sent over, including the list of symptoms I’d given her. He said that was very helpful, but he wanted to hear it all in my own words. I told him about the pain, the weakness, the fatigue, the stiffness, and how there were days when I couldn’t drive, walk, or sit up. I told him how I’ve had similar symptoms in a much milder form since at least 2005, but how it all got exponentially worse this past May 7.

He showed me the actual numbers from some of the bloodwork I had done. I don’t remember the specific numbers now – I wish I’d requested a copy – but I remember the gist. A normal CRP result is generally under 10 mg/L, preferably lower, but mine was above 50. I think it showed a normal range for SED rate as being a decimal less than 1, but mine was somewhere around 5. Both results, he said, indicated nonspecific inflammation, which could be anything from a cold to a broken bone to cancer. Basically, they’re helpful for knowing something’s wrong, but not what is wrong.

I didn’t get an actual value for my ANA, but he said it was considered a “low positive.” He also said that the test has a high rate of false positives, but for me, he didn’t think this was false. An autoimmune disease is strongly suspect. But I already knew that.

Strangest Exam Ever

I didn’t have to put a gown on or anything, but he did examine my body. He looked at my rash, which I explained was “not bad” now, and although it’s smooth now, the spots will be raised later. He pressed on various parts of my body and asked if it hurt; I think that may have been a tender point test for fibromyalgia, but I don’t have all the requisite tender points. He pressed down on my legs and asked me to try to kick up, then pull back. Similar thing with my arms, trying to push him away, then pull him closer. The arm things were much easier than the leg things, but I would have had different results on a different day. My legs were very, very shaky, and my muscles did show soreness. It was very weird.

So for a working diagnosis, since insurance companies like that sort of thing if you want to continue treatment, he wrote me up as having “polyarthritis of multiple sites” on my office visit summary. Polyarthritis, Wikipedia tells me, “is any type of arthritis which involves 5 or more joints simultaneously…Polyarthritis is most often caused by an autoimmune disorder such as Rheumatoid arthritis, amyloidosis, Psoriatic arthritis, and Lupus erythematosus.”

The Plan from Here

I have a follow-up appointment in two weeks.  He gave me a script for more lab work and asked me if I could get it done today. The lab was right downstairs from his office, so that was easy. None of the bloodwork was fasting. The technician who took my blood explained that most of the tests that were ordered are “cyclic,” which apparently means it takes an extended period of time to return results. She said they won’t have results for a week and a half, so an appointment in two weeks is really quite speedy.

Because I’m intensely curious about what I’m being tested for, I had to look up what all of these tests show:

• Aldolase – checks for liver problems
• Anti ds-DNA – helps diagnose SLE (lupus)
• Anti-Jo-1 – helps diagnose idiopathic inflammatory myopathies (IIM)
• Beta-2 Glycoprotein 1 Antibodies – helps diagnose antiphospholipid syndrome (APS)
• C3 Complement – monitors protein levels in patients with autoimmune disorders
• C4 Complement – monitors protein levels in patients with autoimmune disorders
• Cardiolipin Antibodies IgG/M – helps diagnose antiphospholipid syndrome or sometimes other autoimmune diseases
• Celiac Disease Profile – helps diagnose celiac disease
• CPK – Creatine Phosphokinase – helps diagnose dermatomyositis, polymyositis, and other muscle diseases
• CRP – C-Reactive Protein – identifies inflammation
• Cyclic Citrullinated Peptide Antibody – CCP – helps diagnose rheumatoid arthritis (RA)
• ENA Profile – distinguishes between autoimmune disorders, a followup to the ANA test
• Lupus Anticoagulant Profile – helps diagnose antiphospholipid syndrome, not to diagnose lupus
• SED Rate – ESR – helps identify inflammation, infections, tumors, and degenerative conditions
• Sjorgen’s Antibodies – apparently a new test as of 2013, helps diagnose Sjorgen’s Syndrome

Oh, and a urinalysis. Fun times. Glad I brought my bottle of water with me.

I gave them 12 vials of blood. (I asked her, because I couldn’t count them all from my vantage point.) I won’t be getting a phone call about my results because my appointment follows soon after.

Waiting sucks, but I know this literally could not go any faster because of how the blood tests are run. I’m hoping one of these things pans out and provides me with an actual diagnosis.

Read my Big Fat Medical Update for more details.