Paula V Barreras Cortes, MD

“Excellent...”

Excellent

“It will take a lot to earn some ...”

It will take a lot to earn some trust. It seems the doctor should do her homework on behavioral aspects of stiff person syndrome. My wife is dealing with enough anxiety about what is happening to me already, it harms us when the doctor gaslights us about behavioral symptoms not being associated with the disorder, or with untreated neuroinflammation. I haven't seen her notes, but I also suspect she'll miscategorize my behavior as some kind of functional or psychiatric disorder or overlay, when the inconvenient truth is that I am suffering severe psychological and neurological harm due to deficient care. I didn't come to her to "solve the diagnostic puzzle". I have the symptoms, the history, the markers, the response to treatment. It's settled. I can see why it benefits your organization to cast doubt on the diagnosis at this point, though I wasn't actually expecting this doctor to go there. Didn't appreciate being "corrected" about ibudilast. The doctor said doesn't lower NfL, when I bring it up, instead of asking why I think that. I would have explained a potentially relevant finding from my whole genome sequencing results and I had hoped to ask for her interpretation.I had hoped to center the discussion about improving symptom management, medication optimization. She didn't seem to care what my goals were, her goals of casting doubt on my diagnosis and my treatment progress seemed more important.Numerous emails to her office ahead of the appointment asking about and offering my whole genome sequencing results were unanswered and it was clear that in the months between my referral and appointment, even the hours between my arrival and appointment, she was essentially unfamiliar with my chart. When I mentioned that everolimus was part of my treatment plan, her reflexive comment to the training fellow that it is not used in SPS, is kind of true. Drugs of the class are used in refractory cases, but once again, she could have asked me why it was planned to be used, which segued into my pituitary and endocrine dysfunction, which has basically glanced over, even though the co-morbidity may have implications for the level of dysfunction I'm experiencing. Do some homework and listen more. Show up on time and treat your patients with respect.

“Concern for my ability to drive ...”

Concern for my ability to drive was a major concern. This is tied to my ability to maintain employment (and therefore medical insurance).Options in this area were not covered very well.