Danishgirl

Cmreber, I too live in CA which is why if I'm going to make a trip out there for a 4th time - super expensive - I think it's reasonable to see the actual doctor vs NP. From what I understand, 3 years ago UCSF didn't even want to recognize autonomic dysfunction - said it didn't exist (they are starting to move a bit from that). Mayo disagreed with Stanford's autonomic Dr so I'm sort of forced to go back to Mayo. Glad you found someone locally. Are you in Northern CA? It just shouldn't be this difficult to get treatment - 4 years - and I finally find what I was hoping would be a great path forward, but not seeing the dr directly this makes it hard.

I saw Dr. Goodman at Mayo back in Sept 2016 and liked him - we had a subsequent email exchange where he recommended IVIG. On my return trip to try and further nail down my autoimmune diagnoses (Sjogrens everyone seems to agree on, but there is still no consensus on vasculitis and they seem to be going out of their way to disprove this instead of looking at the obvious tests results) I tried to see him (months out I requested the appointment, was told someone would call me. I left multiple messages, etc. I received a call the week before my trip and was basically told he can't fit you in now because it's too close to your appointment (mind you I had first called 2 months out). Anyway, I saw his NP Lisa. She's nice, but my case is very complicated and I would prefer to see Dr, Goodman. Anyway, fast forwrd to once again calling to ask for an appointment with Dr. Goodman for however far out it is. Ive been told the clinic has changed and I can't see Dr. Goodman and and I have to see the NP. Has anyone else ran into this issue? I don't live locally either so I'm traveling to AZ - I'm in the process of an IVIG appeal and it's not even clear to me if Dr. Goodman's notes vs. the NP were even sent in the first place. Frustrated.