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Mayo Clinic: The Journey Continues- Autonomic Dysfunction

Welcome back, I hope everything has been well. It has been a while since I wrote regarding my journey with this whole Mayo Clinic thing. You can read more about it here. Where I last left off, I was calling Mayo Clinic everyday to get an appointment to someone in Neurology because they are apparently the group that sees people with Dysautonomia. Why go all the way to Mayo Clinc, you ask? Well if you do a search, there aren't many doctors in the country who actually deal with people who have Autonomic Dysfunctions. After having this for almost ten years and seeing dozens of doctors, I have only found TWO that deal with my condition or have even HEARD of it.

This is important: Mayo implemented a waiting list for the people with Autonomic Dysfunction to get in to Neurology. So I stopped calling everyday around Thanksgiving. They put you on a wait list and when your name comes up you are mailed a welcome packet with your appointment dates, details and a person to call to provide your list of current medications. Once you have an appointment, the people in Neurology are very accessible. and easy to reach.

At Mayo Clinc there is a team of doctors that handle my condition and I am happy because I finally got my golden ticket, a.k.a. my appointments. Yes, appointments with an S. I initially had one on Monday and then one on Friday but they called me back and said that I now have four. There will be an evaluation, more autonomic testing and more adrenal testing. Then they will give me one day to recuperate and then give me their findings on Friday...hopefully. I am excited to have gotten this far and I only started this four months ago. My first appointment with my one Neurologist took me nine months to get in, so I think that four is a huge improvement.

I highly suggest creating a patient portal account when you first start calling. That way you can tell them your history ONE TIME and it can be recorded so you don't have to repeat it when speaking to someone. They also use it when sending you information about your appointments and include communications with your doctors.

Right now I am working out all of the logistics like travel, work, paperwork, etc... I will keep you posted on the whole experience because I really haven't seen on the net what to expect from a patient's point of view regarding this process. I hope that there is someone out there that finds this information helpful.

One day at a time.

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