Progressive supranuclear palsy

well i finally got in touch with the Neuro. dept at the Mayo and I was told they don't have any open appts. They have more patients than appt available.
i asked her what i was suppose to do? she said to contact my Neurologist, So I am waiting to see him. i have an appt on 11/1. i was very disappointed and hurt by this response.

Hi, @pattywelch - It must be so disappointing and frustrating to not get an appointment at Mayo Clinic. Unfortunately, because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors. Mayo would not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving.

Nonetheless, it is hurtful to get such a response. I get that.

Another option would be to go to a facility in the Mayo Clinic Care Network, https://www.mayoclinic.org/about-mayo-clinic/care-network/members.

I am reassured, though, that you have an appointment with your neurologist tomorrow already. Did he or she wish to refer you elsewhere because s/he doesn't have experience in PSP or because you requested a second opinion?

i wanted a definitive diagnosis. the PET scan isn't done here for PSP. i just want to know what i have and then i can deal with it after. it is very difficult to deal with something if you don't know what it is. i'll see what my neurologist says today and let you know.

Hi, @pattywelch - wanted to check in with you and see what your neurologist had to say at your 11/1 appointment?

I had a change in my insurance so I was unable to keep the appt. I am working on this problem.

@pattywelch, that must be frustrating. Please keep us posted.

Anyone have been diagnosed with this. Are there any Clinical Trials for this

Hi @2109 you may have noticed I moved you post to this existing discussion on progressive supranuclear palsy so that you can see what tohers have said about this condition. Simply click VIEW & REPLY in your email notification to get to your post.

Here is one clinical trial for this condition:

Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) - https://www.mayo.edu/research/clinical-trials/cls-20146820

In addition if you go to this link you can see the other clinical trials that are ongoing or completed at this time: https://clinicaltrials.gov/ct2/results?cond=Supranuclear+Palsy%2C+Progressive&term=&cntry=&state=&city=&dist=

@2109, were you or someone close to you recently diagnosed with this condition?