New Diagnosis- Looking for advice
Hello, this is my first time posting here and just looking for some advice/guidance. So to give a background story as there is a lot to unpack about 3 months ago I was in the house with my family after dinner, fainted twice and then began to have a seizure like episode. Went to the hospital and was sent home as “syncope”. Woke up the next day and had continuous of these seizure like episodes at times struggling with consciousness. I spent a week in the hospital with these episodes, being transferred to another hospital without many answers besides that the episodes were non epileptic. I was put on medication for a that is anticonvulsant and migraine preventative and sent home. This continued on until I pushed for some additional testing and was referred to a rheumatologist who diagnosed me with Mixed Connective Tissue Disease, Sjogrëns, Mass Cell Activation Syndrome, Benign Hypermobility and POTS (after a tilt table test). When I walked into his office after testing I think he must have believe I was perfectly fine because he stated “you are a very interesting case”. However the source of my seizure like episodes is still up in the air as they are not sure if it is linked to any of these autoimmune disorders. I had one neurologist tell me that I must have anxiety or some sort of traumatic past. He had a person show just like me who later revealed that she witnessed her sister being murdered. He told me if I accepted my diagnosis and educated myself with some therapy I wouldn’t have seizures again. Needless to say that hasn’t been true. I am not against the idea of therapy but with all of these new findings I am worried that my “seizures” have a deeper cause than anxiety. Has anyone had any experiences like this or any advice? I feel like I’m at my wits end. I can’t talk to my family because they all think I’m in denial or I’m being difficult. But I feel like if I never pushed the first doctor we would have never found out I had an autoimmune disease. Need some advice.
Posted May 11, 2025, 4:52 PM UTC