This is a question that I have had for a while. I have a name for my disease now, after 8 months of being undiagnosed BY EVERY DOCTOR WHO SAW ME, then a hospital nurse finally recognized my symptoms and got me treated, tested, IVIGed, and on MG drugs.
So I have been constantly googling, now that I found my disease name. ACUTE OCULAR and GENERAIZED MYASTHENIA GRAVIS. I have replied to some of your questions. Is there a way to submit a new question? It has taken me over 11 months now to finally start getting my hospital reports and tests results, from ALLSTRIPES and PICNIC HEALTH RARE DISEASE research groups. The papers, that they have gotten on my behalf, are a real eye opener. But how do I get my TEST RESULTS translated into layman ENGLISH. They found my ANTIBODIES TESTS.
BINDING is 8.7, 8.1, and 3.5 nmol/L (high)
BLOCKING is 59 % (high)
MODULATING ANTIBIOTICS is 81% (high)
I have been trying to find a website, that lists and explains the scores in layman ENGLISH, and the “reference ranges list” with my scores, seems to say that I am DEEP into Myasthenia Gravis territory. But HOW deep ? I was diagnosed on 3-24-2020, and I am in remission again now, after my toasted immune system could not protect my left arm from SEPTIC OLECRANON BURSITIS in November 2020.
I am on CELLCEPT and MESTINON … so if I am in remission now, do my scores lower? and how bad is my MG, according to my numbers? Is there a website or MG News web page that tells me? I noticed when I clocked into this website today, that there was an article about ANTIBODIES by Dr. Steve Bryson, but I could not figure out how to ask him my question. So, I am asking, if you have seen somewhere, what my scores may mean … in ENGLISH ?