So I had my rheumatology appt today. E wasn’t feeling up to driving so I did the driving today…. and we had beautiful fall colors once we got out of our county and into the one that my doctor is in. E dozed on the way there, I had him take lots of pictures for me on the way home!
We got there and sat in the waiting room for a couple minutes, then my doctor’s assistant came and got me so we could do all my vitals and all of that. I was at 95 or so on their scale, but none of us believe that I’ve gained 5lbs in the last three weeks, and the type of scale at our PCP’s office is much more accurate than the bathroom scale (that’s what it made me think of, I’m not sure exactly what kind of scale it was, but it looked like a big version of what you’d get for a bathroom) they have at the rheumatologist’s office, so we’re going with my weight still being just over 90 lbs. I’ll be weighed again next week when we have an appt at the PCP’s for E, I’ll also be getting labs done at that point. From how it looks I’ve not gained weight, but I also haven’t lost more weight, which is good.
I didn’t think to check what my blood pressure was, so I don’t know if it’s still stabilized at 120/80 or if it’s gone down to what used to be my normal… or if (please not this) it’s gone up again. I’m assuming it was fine since the doctor didn’t comment on it, but I don’t know for sure. I was running a slight fever also, and would guess I have been for about the last week, which is also about the time I started feeling worse than normal… not sure how to describe how I’ve felt, just that it’s been worse than the norm. I’ve been sleeping a lot the past week or week and a half too. My normal temp seems to be around 97 or so… today’s temp was 99.8. The assistant also got all the basic info from me about meds and so on, as far as asking how I’ve been feeling lately, so I read off what’s been going on… I have a notebook that I jot info into for the doctors so I don’t forget any of it. After this was all finished she went and got my doctor, and mentioned that we may have to get digestive health involved due to my weight (more on this in a bit, but so far only the assistant is concerned about that, my doctor is doing a lot of testing first) and wanting to help with whatever is going on in my digestive system.
My doctor came in very quickly after the assistant left, and we started talking about how I’ve been feeling. I filled her in and she asked some questions. After that she had me get onto the table/bed so she could do an exam. The last time she did a full exam was nearly a year ago, when I first went to see her last December. Today she listened to my heart and lungs, and commented on how my heart rate is still fast (there is no medical explanation for this at this point, we’ve done a bunch of different tests and can’t find a reason), but beyond that she didn’t comment on it. She also checked my eyes, throat, and under my tongue to see how they were looking, and checked my lymph nodes in my neck to see if they were swollen. She asked if they’d been swollen recently, and my response was that between a couple of them (behind my ears, in my throat and in my groin) the question is when don’t I have swollen glands somewhere? She checked my joints next, seeing how they felt to her, and asked me which ones were tender and which weren’t. After that she had me lay back and started checking my abdomen for painful spots and just doing an exam, she also listened to my stomach with her stethoscope. Once that was done with that she had me curl my legs up to my stomach one at a time and asked how it made my abdomen feel. Not surprisingly, it felt fine on the right, and hurt on the left (which is where my pain has all been anyway) but all of my joints behaved (shockingly) as she did that, so the only pain was abdominal. Once that was all done she helped me sit back up and we talked about meds and whether I needed refills on prescriptions or not. We also discussed disability as a possibility for me, especially with all the weight issues I’ve been having. She didn’t comment on anything else when I brought it up, but said “with your weight…. Yes, I think it’s a good idea.” so that’s that, I need to go print up the paperwork and get it all started… hopefully by this time next year I’ll be on it, though sooner would be preferable to later lol.
After all of that I went and spoke with her assistant, who scheduled my next appointment and gave me my lab forms. I was surprised, she said the doctor wanted to see me in a month, it’s usually been 3 or 4 months between appts, but obviously she’s concerned about getting these lab results back and making sure my organs are functioning, so we can figure out what’s happening and figure out how to deal with it. I go back in early November to see her.
Hopefully since I’m getting my labs run through my PCPs office rather than the hospital they’ll all be back to her in time… we had a rough time getting my labs from the hospital, some of them had to actually be called for two months after the tests were run, because they never sent them to my doctors.
Here’s what my latest labs are for: (Note: Most of these have been run throughout the last year, mainly last November, so now she’s going to be checking my levels and comparing to last year, with me having been on medication for 10 months now.) Depending on how the levels come out I may have to have a CT scan run for my abdomen so they can see how the organs appear.
Comp C3 (Complement C3): Complement is a group of blood proteins that cause immune responses and inflammation. The complement cascade is a series of reactions that take place in the blood. There are 9 major complement components, labeled C1 through C9. This test measures C3. Complement activity is also measured to monitor how severe a disease is or to determine if treatment is working. For example, patients with active lupus erythematosus may have low levels of C3 and C4, and these component levels may be watched as an indicator of disease activity.
CRP, Quantitive (C-Reactive Protein): This test is used when your doctor suspects that you might be suffering from an inflammatory disorder (as with certain types of arthritis and autoimmune disorders or inflammatory bowel disease) or to check for the presence of infection (especially after surgery). Another site says: Quantitative-CRP is an acute phase reactant, which can be used as a test for inflammatory diseases, infections, & neoplastic diseases. Progressive increases correlate with increases of inflammation/injury. CRP may be used to detect early postoperative wound infection & to follow therapeutic response to anti-inflammatory agents. Recent reports have indicated that a highly sensitive version of the CRP assay may be used as an additional indicator for susceptibility to cardiac disease.
DS DNA (Anti-ds DNA): Anti-dsDNA – the most characteristic autoantibodies of Lupus present in about 60% of patients at some stage during the course of their condition.
Levels of anti-dsDNA rise and fall with changes in disease activity (particularly kidney disease). (Note: basically this is more likely to have changed or be positive if I’m having kidney involvement.)
CPK Total (Creatine phosphokinase Test): When the total CPK level is very high, it usually means there has been injury or stress to the heart, the brain, or muscle tissue. For example, when a muscle is damaged, CPK leaks into the bloodstream. Determining which specific form of CPK is high helps doctor’s determine which tissue has been damaged.
This test may be used to:
* Diagnose heart attack
* Evaluate cause of chest pain
* Determine if or how badly a muscle is damaged
* Detect early dermatomyositis and polymyositis
* Tell the difference between malignant hyperthermia and postoperative infection
* Reveal who carries muscular dystrophy (Duchenne)
The pattern and timing of a rise or fall in CPK levels can be diagnostically significant, particularly if a heart attack is suspected.
I assume this is being run to check the heart things… especially since (if I’m remembering correctly) polymyositis is one of the four common ways lupus can affect the heart. This was last run in either late Oct or early Nov by the ER.
Amylase: An amylase test measures the amount of this enzyme in a sample of blood taken from a vein or in a sample of urine. Normally, only low levels of amylase are found in the blood or urine. But if the pancreas or salivary glands become damaged or blocked, more amylase is usually released into the blood and urine. In the blood, amylase levels rise for only a short time. In the urine, amylase may remain high for several days.
Lipase: A lipase test measures the amount of this enzyme in a blood sample. High amounts of lipase may be found in the blood when the pancreas is damaged or when the tube leading from the pancreas (pancreatic duct) to the beginning of the small intestine is blocked.
The blood test for lipase is ordered, often along with an amylase test, to help diagnose and monitor acute pancreatitis (inflammation of the pancreas), chronic pancreatitis, and other disorders that involve the pancreas. Lipase testing is also occasionally used in the diagnosis and follow-up of cystic fibrosis, celiac disease, and Crohn’s disease.
Comp.Met.Panel(Comprehensive Metabolic Panel): A comprehensive metabolic panel is a blood test that measures your sugar (glucose) level, electrolyte and fluid balance, kidney function, and liver function.
CBC W/PLT & DIFF (Complete Blood Count, with differential):
The CBC is used as a broad screening test to check for such disorders as anemia, infection, and many other diseases. It is actually a panel of tests that examines different parts of the blood and includes the following:
* White blood cell (WBC) count is a count of the actual number of white blood cells per volume of blood. Both increases and decreases can be significant.
* White blood cell differential looks at the types of white blood cells present. There are five different types of white blood cells, each with its own function in protecting us from infection. The differential classifies a person’s white blood cells into each type: neutrophils (also known as segs, PMNs, granulocytes, grans), lymphocytes, monocytes, eosinophils, and basophils.
* Red blood cell (RBC) count is a count of the actual number of red blood cells per volume of blood. Both increases and decreases can point to abnormal conditions.
* Hemoglobin measures the amount of oxygen-carrying protein in the blood.
* Hematocrit measures the percentage of red blood cells in a given volume of whole blood.
* The platelet count is the number of platelets in a given volume of blood. Both increases and decreases can point to abnormal conditions of excess bleeding or clotting. Mean platelet volume (MPV) is a machine-calculated measurement of the average size of your platelets. New platelets are larger, and an increased MPV occurs when increased numbers of platelets are being produced. MPV gives your doctor information about platelet production in your bone marrow.
* Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vitamin B12 deficiency. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.
* Mean corpuscular hemoglobin (MCH) is a calculation of the average amount of oxygen-carrying hemoglobin inside a red blood cell. Macrocytic RBCs are large so tend to have a higher MCH, while microcytic red cells would have a lower value.
* Mean corpuscular hemoglobin concentration (MCHC) is a calculation of the average concentration of hemoglobin inside a red cell. Decreased MCHC values (hypochromia) are seen in conditions where the hemoglobin is abnormally diluted inside the red cells, such as in iron deficiency anemia and in thalassemia. Increased MCHC values (hyperchromia) are seen in conditions where the hemoglobin is abnormally concentrated inside the red cells, such as in burn patients and hereditary spherocytosis, a relatively rare congenital disorder.
* Red cell distribution width (RDW) is a calculation of the variation in the size of your RBCs. In some anemias, such as pernicious anemia, the amount of variation (anisocytosis) in RBC size (along with variation in shape – poikilocytosis) causes an increase in the RDW.
Urinalysis Screen: I’m sure this doesn’t need an explantion as to what is involved… basically it’s checking my urine for proteins and other things that shouldn’t be there, and will help check kidney function.
(It’s a good thing I looked all of these up since some of them require fasting and I wasn’t told, though I planned to anyway…)

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