I now got tested for the autoantibodies at celltrend and I also took part in a clinical trial for POTS autoantibodies.
I will try to test the considering autoantibodies for that, but I was told that 50% of the people with AGG are seronegative. So, a negative result would not mean much.
Back to the POTS-autoantibodies, I have a doctor who would be willing to try medication for the autoantibodies which unfortunately doesn‘t include IVIG. Right now standing more than 10-20 seconds is nearly impossible for me and I additionally wonder if the autoantibodies-thing is triggering my severe MCAS.
Do you get shortness of breath, tachycardia, chest pain, etc, with standing/walking or other symptoms? I also had extremely severe MCAS with anaphylaxis (pre-treatment) and I know there is a proven connection between POTS and MCAS even though I cannot explain what it is.
I first thought of an agonist for the alpha1-blocker oder an antagonist for the beta2. Like Midodrine or Proponalol. (Which have reasons against them... like my cyanotic fingers which could be a problem with Midodrine. Or the Mcas, for which my diagnosing doctor once told me that betablockers are a bad idea because of triggering anaphylaxis). I even thought about trying Mestinon.
My doctor prefers to try Florinef. I was thinking that something that would work against the blocking/activation process of the autoantibodies would help me more. Which, in my understanding, Florinef primarily wouldn’t do.