Waiting time for appointment?

Posted by pamelah1021 @pamelah1021, Apr 8 6:55pm

Hello all, hope you all are doing ok. I have more of a question. My Neurologist thinks I may have Motor Neuron Disease and has referred me to Mayo Clinic in Florida TWO MONTHS AGO! My approval from insurance has also been sent in. Is it typical to have to wait this long?
My patient portal still says nothing. I have called multiple times and have been told my paperwork is back there for them to review? They haven’t even reviewed it after two months? Anyone else have this issue?

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pamelah1021 | @pamelah1021 | Apr 10 10:58am

In reply to @cctee "I was told that they weren’t taking any new Neuro patients, that the demand is greater..." + (show)

Sounds about right. They have ONE ALS Dr. from what the receptionist told me.

Colleen Young, Connect Director | @colleenyoung | Apr 10 11:28am

In reply to @pamelah1021 "Falling all the time and off balance. Twitching in my tongue that goes on 24/7. Leg,..." + (show)

@pamelah1021, I'm very sorry that this was your experience at Mayo Clinic. This is not the way it is supposed to work. I strongly encourage you to contact the Office of Patient Experience. They will want to know about this situation. I understand that you no longer want to go to Mayo Clinic, but I'm hoping you'll share your situation so that is not repeated.

Here's how to contact the Office of Patient Experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu

dlydailyhope | @dlydailyhope | Apr 10 11:39am

@pamelah1021
Did your neurologist do a MRI of your brain and full spine?

kdalda75 | @kndaustin71 | Apr 10 1:05pm

I usually call EVERY morning to see if there has been a cancellation then again in the late afternoon hours!

cctee | @cctee | Apr 10 2:57pm

In reply to @pamelah1021 "Yes, it’s also in the family of things I could have. We will just say nope!..." + (show)

Let’s see if we can figure out somewhere else you can go for an expert second opinion. Are you on the east or west coast? Have you looked at the website http://www.als.org. They have a list of ALS clinics by state. I know MSA has designated clinics of excellence around the country. I’m praying you DO NOT have this. I know someone who has benign fasciculation syndrome, it’s annoying buy not terminal. So keep you eyes on that prize. Will be praying for you and let us know if you find another good place for your 2nd opinion. ❤️

alexa2020 | @alexa2020 | Apr 11 12:22pm

In reply to @pamelah1021 "Sounds about right. They have ONE ALS Dr. from what the receptionist told me." + (show)

I have tried over a year, just to get on the wait list. now I have a mayo doctor referral but there are no appointments available. I was told the best bet is to try Gainesville. They do not have the staff to handle more patients

cctee | @cctee | Apr 12 9:12am

In reply to @alexa2020 "I have tried over a year, just to get on the wait list. now I have..." + (show)

What is in Gainesville? Mayo Florida is in Jacksonville, and that’s where I was told they didn’t have any appts in Neuro or Cardiology (no waitlist either). I did get into the Cleveland Clinic for Cardiology, but it took awhile, and I kept calling back for sooner appts.

alexa2020 | @alexa2020 | 17 hours ago

In reply to @cctee "What is in Gainesville? Mayo Florida is in Jacksonville, and that’s where I was told they..." + (show)

Gainesville has a movement disorder clinic that was accepting new patients (this was at least a year ago). Mayo did the search. Gainesville has a university medical school - it may be associated with that. I didn't check into it as at the time I was living too far away.

pamelah1021 | @pamelah1021 | 16 hours ago

In reply to @alexa2020 "Gainesville has a movement disorder clinic that was accepting new patients (this was at least a..." + (show)

I tried for months to be seen at Mayo for Motor Neuron Disease. Could not get an appointment anytime in the near future because they have one Doctor and he is backed up on appointments for months. I gave up.