@knackers323 and everyone's questions that I missed (please forgive my slow responses!), my positive ANA of 1:160 speckled pattern was completely dismissed b/c I was negative on all lupus markers. However I am positive for n-type calcium channel autoantibody which several docs think could be wreaking havoc on my autonomic system and causing autoimmune issues.
My ANA had been negative (under 1:40) for many years and now I have the VGCC calcium antibody plus three others along with the positive ANA but b/c not lupus etc, the rheumy dismissed me. And one of my best friends has lupus and was incredibly ill a few years ago so I know how serious it can be but don't understand why other things are also not taken seriously?
The original doc suggested IVIG, plasmapheresis, immune modulators or immune suppressants but then retracted everything and referred me to someone else (I am certain b/c my case was too complex for him b/c I also have MCAS, POTS, and severe breathing difficulties).
He had me do an EMG to rule out LEMS and even though it showed an abnormality with my left phrenic nerve, this was also dismissed as "normal" or as a "technical error" as soon as LEMS was ruled out. (LEMS can correlate with my antibody which is why they checked for this and also for lung cancer which is the #1 thing it can correlate with but I was negative.)
So the long winded answer is that everything abnormal was dismissed and the proposed treatments were denied. But my main doc completely disagreed and felt it was all abnormal, was all related, and was all serious so he applied to my insurance to get IVIG and we are still waiting to hear back.
If we can find a way to get it approved, IVIG will be the first treatment I try in the hope of modulating my immune system and all these autoantibodies. Depending how it goes, my second goal is RTX to wipe out the Ab's at the production stage. No docs will do plasmapheresis so not an option for me and hardcore immune suppressants too dangerous IMO.
So if I can make this happen, my plan is 3-4 months of IVIG and later RTX. I am certain I can make it happen but it is just a very slow process with many roadblocks. Hoping this answers your questions and feel free to ask me more but it might take me a few days to respond!