Hey Grok, when I first got Scleroderma, one of the most worrisome symptom was what I called sparkles. It started in my arms and over months spread throughout my body. It felt like what happens when something would frighten you, pricks that eventually spread thoughout my body. At the peak, the sensation happened 20 or […]
Category: Q & A with Grok
Positive RNP & SCL-70
I asked, Hey Grok, I am positive RNP and SCL-70. What does that mean to me? Grok says, Thank you for sharing the 2019 Mayo Clinic lab results. These results provide valuable information about your autoimmune antibody profile, specifically from the Antibody to Extractable Nuclear Antigen Evaluation, Serum (ENA panel). Let’s break down the findings, interpret […]
Familial clustering
Hey Grok, my niece was recently diagnosed with Sjogren’s. She’s 26 years old and has had the condition probably from her teens. As you may know, 9 years ago, at 62 year old, I was diagnosed with rapid onset Diffuse Scleroderma. Shortly after, my first cousin, on my Mom’s side, at 52 years old, was […]
SRC & Prednisone
Hey Grok, my cousin has limited scleroderma. She has a lung infection and her general physician wants her to take 40 mg of prednisone for 5 days to help clear it up. She already has low kidney function and is concerned about Renal Crisis, something that all scleroderma patients fear. What can you tell us. […]
Macrophages Discovery
Hey Grok, what’s the scoop on the UVA research on macrophages discovery as a cure for scleroderma? THOUGHTS The recent buzz about UVA (University of Virginia) research on scleroderma centers on a January 2026 discovery published in the American Journal of Pathology. Researchers, led by Sanja Arandjelovic, PhD (assistant professor in UVA’s Department of Medicine), […]
Autoimmune & Hearing Loss
Hey Grok, can you tell me about Anti-68KD (Hsp-70) Antibodies test? I understand it’s a blood test for auto immune caused hearing loss? THOUGHTS Yes, Donna — you’re exactly right. The Anti-68 kD (Hsp-70) antibody test is a blood test most commonly used to help support the diagnosis of autoimmune inner ear disease (AIED), also […]
Positive SCL-70 & RNP
Hey Grok, I have diffuse scleroderma. I am SCL-70 positive and RNP positive. My doctor is watching me for Lupus. Do I have MCTD or Overlap Syndrome? What else can you tell me about my condition? I’m sorry to hear you’re dealing with diffuse scleroderma (also called diffuse systemic sclerosis or dcSSc)—it’s a challenging condition, […]
Flow Cytometry Test
Hey Grok, here are the results of a FLOW CYTOMETRY test. Can you help me understand.SPECIMEN: Peripheral bloodINTERPRETATION:No immunophenotypic evidence of a lymphoproliferative disorder.No blast population is identified.IMMUNOPHENOTYPE (of relevant population): No abnormal population is detected. T-cells are unremarkable,expressing CD2, CD3, CD5, CD7 with CD4 greater than CD8. B-cells are polyclonal.Normal neutrophils are present. A […]
Ocular Migraines & Meds
Hi Grok, as you know I have scleroderma diffuse. I also occasionally, since my diagnosis in 2017, has ocular migraine with headache. I have the zigzag and blind spots that expands until they disappear, about 20-30 minutes. I take Cellcept, Hydroxychloroquine, actemra, Flecainide plus the traditional blood pressure and cholesterol. I do have a lot […]
C3 & C4
Hey grok, I have diffuse scleroderma. My C3 and C4 Complements are low. What does that mean? THOUGHTS Low C3 and C4 complements in the context of diffuse scleroderma (systemic sclerosis, or SSc) typically indicate hypocomplementemia, meaning your immune system is consuming these complement proteins faster than it produces them. What are C3 and C4? […]