Accepted for Neuro care. How to be seen sooner?

Posted by f2024 @f2024, May 9 12:14pm

In mid April, I was accepted for an in-person appointment at Rochester's Neurology department after completing a self referral. I spoke with the Neuro appointment desk yesterday. They estimate they will contact me in August to schedule an appointment. By August, it will have been 10 months since I became sick and I have been steadily declining. I am concerned that the longer it takes to be seen, the less chance there is for greater recovery.

I am 24, live in Lexington, KY and work for the University of Kentucky. I have been seen by multiple neurologists at UK for sensory loss, nerve pain, and tremors, a neuro-opthalmologist for irregular pupils, blurry and double vision, an ENT for room spinning dizziness and gait instability, and PT/OT to attempt to recover weight loss and muscle loss predominately on the R side of my body. After speaking with my neurologist, he has clinical suspicion that my symptoms could be due to autonomic dysfunction or functional neurological disorder. He recommended I pursue care here to investigate pupil abnormalities, chronic GI issues such as severe constipation, night sweats and patchy sweating across my body, irregular blood pressure, bouts of syncope, irregular tendon reflexes, and patchy sensory deficit in my R hand, foot, and leg.

He said many things can cause autonomic dysfunction however, the degree of it is unusual for my age. UK has ruled out any brain or spinal cord damage that could be responsible. I do not have an infection that appears to be responsible. He said other things that may cause it could be autoimmune and that UK does not have the tools necessary to investigate autonomic dysfunction.

Prior to October of last year, I was able to work full-time, exercise regularly, maintain my home, and socialize. Now, my symptoms impact all aspects of my life. They have progressively gotten worse as time goes on. If there is something wrong that Mayo Clinic can find, I am concerned the longer that I go without treatment, the worse the prognosis may be.

I am so grateful to have been accepted to an in-person visit and to be on the wait list. I have asked my neurologist to send a referral and my medical records as well. In the meantime, I am wondering if there is anyway to be seen sooner. If anyone has advice or has experienced similar health concerns, I would be grateful to learn about your experiences.

Thank you

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Not to dissuade you from Mayo, but Vanderbilt has a program too (probably much closer): https://www.vumc.org/autonomic-dysfunction-center/vanderbilt-autonomic-dysfunction

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@aaroncush

Not to dissuade you from Mayo, but Vanderbilt has a program too (probably much closer): https://www.vumc.org/autonomic-dysfunction-center/vanderbilt-autonomic-dysfunction

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Hi @aaroncush
Thank you for the recommendation. I have already asked my doctor to provide a referral to Vanderbilt as well. I am waiting to hear back.

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I have been accepted at Mayo Rochester's Pulmonolgy Department and have an appointment in July. The Pulmonology department updates its schedule every week. She gave me their direct department number and said I could call and see if there had been any cancellations that would get me in sooner. Perhaps the Neuro department has a similar procedure. Wouldn't hurt to ask.

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@f2024 you must be so frustrated with your medical situation! But you are advocating for the best possible medical care and that is the best you can do. I am wondering if the Florida Mayo is as well equipped to handle your case as Rochester MN. It might be worth looking into to see if an appointment can happen sooner. I know in our experiences at Rochester Mayo over the years that various specialties operate differently as far as scheduling, and some staff are much better at working to get you in than others. by continuing to call and check on your status there, you may be able to fall into a cancellation appointment. Have you asked about that possibility? I hope your Vanderbilt contact comes through more quickly and you are able to see someone there sooner.

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@jml6812

I have been accepted at Mayo Rochester's Pulmonolgy Department and have an appointment in July. The Pulmonology department updates its schedule every week. She gave me their direct department number and said I could call and see if there had been any cancellations that would get me in sooner. Perhaps the Neuro department has a similar procedure. Wouldn't hurt to ask.

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I'll give it a shot. Thank you!

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@sepdvm

@f2024 you must be so frustrated with your medical situation! But you are advocating for the best possible medical care and that is the best you can do. I am wondering if the Florida Mayo is as well equipped to handle your case as Rochester MN. It might be worth looking into to see if an appointment can happen sooner. I know in our experiences at Rochester Mayo over the years that various specialties operate differently as far as scheduling, and some staff are much better at working to get you in than others. by continuing to call and check on your status there, you may be able to fall into a cancellation appointment. Have you asked about that possibility? I hope your Vanderbilt contact comes through more quickly and you are able to see someone there sooner.

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Hi @sepdvm, Rochester was recommended to me specifically for their autonomic clinic. However, if the wait keeps getting extended, I think you're right that looking into Jacksonville could be helpful. Thank you.

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