Waiting time for appointment?

@pamela1021
What are your symptoms and what tests did your neurologist do to determine you may have a motor neuron disease? How are you currently being treated? Why did your neurologist suggest going to Mayo Clinic?

I have heard that Mayo Clinic may be turning some people away depending on what their condition is or how well they are staffed to handle the volume of patients.

@pamelah1021, how frustrating to be in limbo like this. Two months is a long time to wait. Are you able to ask your referring doctor to call on your behalf to see why the long review period?

I was told that they weren’t taking any new Neuro patients, that the demand is greater than they have appts. It is actually hard to get an appt for anything involving a specialist I’ve waited for months for that and then more months for tests.

I am so sorry to hear about your possible diagnosis! Having to wait for more than a few weeks, when this diagnosis is under consideration, to be seen by a neurologist, is disconcerting and unacceptable, in my opinion! I was diagnosed with an incurable neurodegenerative disease, where neurons die, and movement is affected, progressively, a few years ago! Initially, I was promptly seen by a neurologist and evaluated. Recently, my neurologist told me that he is retiring, and referred me to a movement disorder specialist neurologist! This Doctor is incredibly busy, and when I was called by the new neurologist’s office, to set up an appointment, the earliest time available is in August, 2025. With my deteriorating condition my neurological symptoms can get worse, easily, so i feel like I’ve been put off by the medical community! As an example, just in the last couple months, I’ve had 4 falls, with, luckily, just minor injuries. Additionally, I’ve become incontinent and use an adult diaper! I have trouble at times, with swallowing. I need help getting around, ambulating, at times! That help is inconsistent! So, I certainly can empathize with you and your situation. With my being nearly 80 years old, maybe that has something to do, with the lack of urgency, by the Dr.!s office, in terms of setting up a timely appointment! Going to the ER, with waits of 6 hours or more, is not an option I relish! I live in a Regional Hospital city medical service environment. I’m sure this is very frustrating for you, especially with uncertainty with diagnosis, treatment, and follow up care! I would recommend try calling in again, and see if you can get an appointment sooner! Wishing you the best! Take care!

Sorry to hear about your situation too. To live to nearly 80 years of age and then to not be able to get good health care is so very sad, I don’t know how we ended up this way. My Dad passed away in 2019, and at every turn it seemed there was help available, and he lived in a very small town. May God bless you with a better care team. Oh, and I am fearful that I may have MSA, is that your health concern too? I hope not. God bless.

Thanks for your most supportive reply! I was diagnosed with Parkinson’s Disease, that is progressing to the more difficult stages of disability! I truly hope that we both will be lucky enough to receive the caring concern of medical providers, whose help will make a positive difference in our lives, going forward! God Bless You, too!!

We called the neurology department on the 10th day after paperwork submittal and it seemed like they quickly found it and had someone review. We then got an appointment set for 3 weeks out. I’m sorry for your difficulties. Perhaps a call, or additional call, to the department may help.

Falling all the time and off balance. Twitching in my tongue that goes on 24/7. Leg, arm and shoulder twitching. Muscle cramping in hands and calves. Can’t control my hands and drop things constantly. The list goes on….. He did and EMG that showed fasciculations or (twitching) a Nerve Conduction Study, showed abnormality’s in thumbs and left arm. The one that twitches and and hurts. Also a neurological exam. He thinks I have a form of MND but not sure which one hence he wanted a 2nd opinion from Mayo Clinic. After waiting two months and not hearing a word, I told him what was going on so he called them himself yesterday.
So the rude lady calls me this morning and says we can see you July 10th for a talk to the Dr. No testing, no nothing. I’m beyond furious with them. It’s a 3 hour drive. I told her just cancel me, no way will I step foot in there! I quite possibly have ALS but they aren’t bothered enough to see me so no, not going. Sorry so long I just got off the phone with her but was quite a bit to explain.
I wish everyone the very best and hope you had/have better luck than me lol. Thank you everyone!!

Yes, it’s also in the family of things I could have.
We will just say nope! Not me lol. Thank you and God Bless!

Yes, it is rediculous how long they make you wait for an appointment these days. It’s months and I find that to be bad management of time on the receptionist part a lot of times. Or not knowing how to schedule appointments efficiently. But you would think when someone has a neurological problem that truly affects their life in such a way, we wouldn’t be waiting months to be seen. We need specialized care! Thank you and God Bless!!