- CASE FILE
Prior to April '19, I was a fairly healthy 58-y-o; now have unknown autoimmune disease, high ESR, positive ANAs, low lymphocytes
ABOUT THIS CASE FILE
Autoimmune is epidemic, yet as my primary says, it can take years because it's a diagnosis of elimination.
Ironically mine was discovered in a quest to get healthier after an Oct 2018 fibroscan at a regular check-up showed NASH Stage 3. Four years prior I had lost weight and reversed the fatty liver. I had gained most of the weight back, so knew I had to get serious. At 220, 5'6" non-smoker/drinker, I successfully worked over winter at losing 20 pounds, totally changing my diet to mostly organic, whole grain, fish, poultry and plant-based (have lost another 25 lbs. now so down to about 175). Liver enzymes are perfect now. Fatty Liver disease was attributed to my obesity and high triglycerides (1000 fasting if not on medication). The hypertriglyceridemia was discovered in 1992 when I was diagnosed with polycystic ovarian syndrome. I have taken medications for TGs for years and currently on Lovaza and OTC Niacin plus wt loss and careful diet. Reasons for the high TGs is unknown, whether genetic or a lipid dysfunction (since a teen have had a partial lipodystrophy look with pot belly, straie and thin arms/legs).
Anyway, I started having fatigue, night sweats and leg/calf cramps in the fall 2018 and was tested for Lyme (tiny tick on belly in fall no red bullseye) and magnesium deficiency, both negative. The Sjogren's board on Facebook I'm following recommends a retest, so I will ask for the Western Blot tick test when I see the primary in September again. My rat terrier has had several unknown tick diseases over the years.
Worried about my liver, in April 2019 I found a research study that offered a free MRE and biopsy, so enrolled and was accepted. It showed stabilized fatty liver bridging over to stage 1 fibrosis, which was a much better dx. I also had a physical there, which showed positive ANA, Factor 5 Leiden, and mild-to-moderate aortic regurgitation and 4.1 cm aortic dilation (based on a murmur that has been noticed my entire life but not dx'd until then). I was shocked at this, but it's okay as a watch and wait situation.
Directly after the biopsy and continuing for at least a month, I was incredibly sick after eating any food (diarrhea) and ate only small meals of whole foods. About a week after the biopsy, I had a host of symptoms (insomnia, fatigue profuse sweating/chills, tinnitus, myclonus/muscle twitching, pain, sacroiliitis) so I followed up with my local primary and rheum, who did further ANA tests.
The ANA titer shows several markers (ANA Pattern 1 Homogenous 1:64, 1:32; ANA Pattern 2 Speckled 1:64 and 1:32; Antinuclear Ab +, Anti-Chromatin +, Anti-Centromere <1.40), but none perfectly typecast to lupus or other conditions. I had the positive antibody for Sjogrens (Anti-Ro AB EIA) but passed the tear test. My bloodwork thus far is normal, excepting low lymphocytes. In May and June, got a discoid rash in the sun (healed before I could get into dermatologist for timely biopsy while active) and two episodes of petechia on my chest. Most bothersome is the myclonus at night while trying to sleep, and a couple of days on prescribed gabapentin worsened it immensely. Magnesium (not low in test) also worsens already tingly calves. Recently have noticed droopy eyelid and odd muscle pain after repetitive use of hand at end of day. Sometimes in the morning, the right eye is hard to open.
The tentative dx is fibromyalgia and Sjogrens with possible systemic involvement plus major depression and primary insomnia. Meds taken depression and sleep, as well as vitamin D, E, B complex, Multivitamin, OTC Niacin, Lovaza, baby aspirin. I have documented all the arrival of all symptoms with photos.