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Autonomic Nervous system vs dysautonomia
Neuropathy | Last Active: Jun 1, 2022 | Replies (45)Comment receiving replies
Hello Robyn, My name is Liz and I am new to this forum or site. I am looking for any tips or help you would suggest to get me seen by Mayo. I have applied 3 times over the years and been rejected to being seen by Mayo. I too have autonomic disfunction which has greatly negatively impacted my life. I have been unable to work for last few years and my condition is getting worse. I had applied to the Mayo group that helps individuals figure out what is wrong with them, maybe that was not the right group. I like many others have been to Doctor after Doctor and still I am deteriorating. I feel like if A Dr could identify the cause of my Disautonomia I could get better treatment and help. I am on meds that just TRY and help with symptoms and think they are probably contributing to other problem symptoms. If you or anyone reading could point me in the right direction I would greatly appreciate it. Telling me how you applied or set up your appointment would be so helpful. I am assuming from what I have read that Most patients are starting with neurology, not sure so If you could let me know which department, that would be very helpful!
I would be happy to share my experiences with applying for Soc. Security (SSD) disability, they were not as smooth as Debbie’s. I was finally approved at the end of last year. I also have experience with Work related Insurance Disability which I was approved for, taken off/ rejected & after Attorney involvement, reapproved and put back on.
Any help you can give is appreciated. I am also going to post on the bigger Disauto post to see if any help there. Thank you for your time. Liz
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@lahjuly4 Hi Liz! Welcome to Mayo Connect. I stumbled upon this site several months ago and have found it very beneficial. People here are so supportive and it's comforting to be able to connect with people who REALLY understand what you're going through. You can subscribe to chats that are most relevant and gain invaluable insights. I hope you find it as helpful and comforting as I do.
May I ask which Mayo location you've tried to get an appointment with? I live in Phoenix, AZ and my Mayo Neurologist is in Scottsdale, AZ. Have they given a reason why you were denied an appointment? Could it be that your insurance isn't accepted?
I did a search on the Mayo website of Arizona based Neurologists. From there, I read the bios of each of the Neurologists and saw that one of them has a special focus on autonomic dysfunction as it coexists with headaches. That seemed like a perfect match for me (and it truly has been). Then I checked my insurance website to ensure that doctor is covered in my plan. After that, I called Mayo to schedule the appointment. They informed me I may not be scheduled with that doctor but they would schedule me with one that would meet my needs. Luckily, I got an appointment with the doctor I was hoping for. When I called to make the appointment, I explained I was diagnosed with small fiber neuropathy, autonomic dysfunction and I suffer from chronic headaches and that I was looking for a second opinion on a treatment plan and to potentially transition my care to Mayo. They called me back after a couple days and said I was "approved for triage" (still not sure what that meant lol) but that I needed to have all of my relevant medical records sent to them before scheduling. After I had records sent, I called back to make the appointment. To sum it up, first make sure your insurance covers Mayo doctors and that Mayo accepts your insurance. Then call to request an appointment with Neurology.
I'm sorry to hear your experience with disability was so difficult. Clearly it wasn't understood how bad this condition really can be for a person. Again, it's one of the best things about this forum; you will connect with people who truly understand and empathize.
Do you mind sharing a little more about your symptoms, how you were diagnosed, how long you've been suffering? What treatments have you tried?
I hope the information I provided is helpful. Feel free to ask more questions. I am here for you.
Wishing you well,
Robyn