Hi Healthgirl,
I’m glad that you finally got some answers and I’m sorry that you still can’t get a proper treatment.
I’m also very frustrated (to say the least) with the dysfunctional medical system, had to figure out my diagnosis by myself and struggled for many years to find doctors who will take me seriously and help me to get a treatment.
It is a huge relief to finally have some doctors that I can consult with, and treatments that help.
I’m doing as much as I can to help others with somewhat similar conditions in local support groups and to educate the doctors around me.
If you have autoimmune manifestation, are IVIG, Rituximab and other immunological treatments might be relevant?