dcd2103 - refresh my memory...........what led to your autoimmune diagnosis? I forgot the type/name of it, nerve related I remember though.
MedicalNerd - pardon me for derailing your post a little
The autoimmunity was based on the following bloodwork:
Super high ANA, 1:1280-1:2560, which is actually off the charts at some labs (NYU only goes up to 1:640)
Low C4 (indicates autoimmune consumption of the complement)
Low WBC (usually below 3.0, often seen in connective tissues diseases, but not specific)
Low positive RNP antibody
Low positive SSA antibody
Low positive ACrH receptor antibody
Positive Cunningham Panel
I was diagnosed as having a "non-specific connective tissue disease". So basically in the same family as lupus or sjogrens, both of which can attack the nerves, but i dont have either exactly. Rheumatologist diagnosed it as "Undifferentiated Connective Tissue Disease". Dr K says its "non specific post-infectious autoimmunity". The name almost doesnt matter, all it means is i have some form of autoimmunity that causes inflammation and attacks my nerves.
The specific type of nerve disease i have is small fiber. Mine is extremely debilitating tho. Some people I see they're like "oh yah it sucks, but i just power through". Not what I got, it puts me to the point of tears quite regularly. Cant work, cant walk some days. I think thats because a lot of people with SFN its due to autoinflammatory mechanism or due to MCAS, where the nerve pain is due to collateral damage from inflammation targeted at something else..but with autoimmune neuropathy, it tends to be worse, as its due to a concerted autoimmune attack on my nerves (dont quote me on that, just something ive noticed anecdotally). I've seen people with Sjogrens often have this type of debilitating nerve disease like me.
It started in 2014, my ANA first went low positive to 1:160. Was getting veritgo, headaches, fatigue. Then I got stomach sick on a trip in 2019, developed severe sibo after it. 2 weeks later the neuropathy began. One day it wasnt there, next day my whole body was buzzing
What first triggered it in 2014, i dunno. I went through a period of awful existential depression after a breakup in 2013 right before it. Also had my first flu shot. But there were signs going back to childhood that i was never "right", so i explore lyme, mercury, microbiome. I may never know. But i hang out in the lyme group as there's so much overlap between lyme and autoimmunity, a lot of treatments for symptoms are the same, other infections like SIBO or EBV, i could also have low level spirochetes triggering it in the background, etc
Post Edited (dcd2103) : 10/17/2020 9:46:27 AM (GMT-6)