Mayo AZ, anyone have issues with getting follow-up appointments?

[Danishgirl]

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. 

[Weyland]

I have seen a few different doctors at mayo clinic in AZ ,but not dr. Goodman. They diagnosed my pots . For some of their specialist doctors you need to see one of their internist physicians first ,but if you saw Dr Goodman before then Im not sure how come you can't see him now . You can't really move up your appointments over there, so sometimes you have to wait a while to see certain doctors. Maybe search for a specialist outside of mayo so you don't have to jump through their hoops . If you need the help now ,don't wait on them. To tell you the truth ,mayo has not helped my situation that much ....But to answer your main question, I have not had problems getting follow up appointments . 

[cmreber]

I wish I could help, but I have only made one trip out there. I, too, saw Dr. Goodman, and really liked him, but that was the only time, and it was about 4-5 years ago.  I have called with questions since then, and have always gotten the NP.  Sorry you're having so much trouble getting answers!  I didn't want to make more trips out there (I'm from California), so I found a specialist closer to me.  My initial testing there was super helpful, but my new neurologist has been able to pick right up where they left off.  Of course, my situation isn't all that complicated, and it sounds like yours is, but maybe you can find someone closer to you, or at least someone you can get in to see.  Hope you get some answers soon! 

[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.  

 

 

 

[cmreber]

Gotcha!  Yes, I'm also northern Ca, up by Yosemite area (Sonora).  I completely understand, that is NOT a cheap trip and it is also super exhausting! You really should be able to get in to see him, and it is so weird they haven't been able to make that happen for you.  And I've never tried UCSF, but it really is astounding to me how many doctor's don't know a thing about dysautonomia.  The neurologist I went with is at Stanford, so that's where I've been going, though I really am only going on an as-needed basis there.  My GP actually has listened to everything Mayo Clinic recommended and has done a lot of research along with me on POTS, so she has really been my go-to over the past few years.  Again, though, mine doesn't sound as complicated as what you have going on, so I think that makes it easier for me to stick so close to home.  It seems like there should be someone there at Mayo you can contact to at least get a call back directly from Dr. Goodman, if nothing else.  It isn't cheap to get there and you would think he could at least do that! I don't blame you one bit for being frustrated!