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Autonomic Nervous system vs dysautonomia
Neuropathy | Last Active: Jun 1, 2022 | Replies (45)Comment receiving replies
@dbeshears1 Hi Debbie-
I wanted to follow up with you, as promised. I had my Mayo visit on Friday. It was a very long day, I was there 8 hours! I started with my appointment with the doctor. She spent over an hour with me! I’ve never had a doctor spend that much time in one appointment to listen and examine. Following that, I moved on to series of tests (she ordered them based off my medical records I sent weeks prior). By the time I got home, the doctor had already interpreted the results of some of the tests (others are lab work and take a few more days for results). Additionally, she ordered a bunch of other tests (2 pages worth), to be scheduled. My diagnoses of small fiber neuropathy and autonomic dysfunction were definitive prior to my Mayo appointment but she wants to make sure we’re not missing anything else. She’s VERY thorough. As a result of the autonomic reflex testing she had me do, we’ve confirmed I also have POTS (postural orthostatic tachycardia syndrome). She gave me the harsh reality that this is all here to stay, which sounds hopeless, but she wants to put me through the Mayo pain rehabilitation/management program. I don’t know much about it but it is a 3 week out-patient program (all day, 5 days a week for 3 weeks) that ultimately gives you the tools you need to manage the chronic pain. She said it’s hard but it’s a very successful program. I am familiar with Mayo and their world-class quality of care, as my dad is a Mayo cancer patient, but being a patient myself, I’m even more impressed, if that were possible. Im so grateful for the doctor and feel like she is genuinely invested in me and improving my quality of life. All that said, if it makes sense for you logistically, it may be worth seeking an appointment at Mayo. I researched the neurologist prior to making my appointment as they all have specific areas of focus. When I made the appointment, I requested the doctor I thought seemed like the best fit based on my needs and her areas of focus. They explained to me that they review my information and pair me with the doctor best suited for me; So while they seem to thoughtfully appoint a doctor to you, it might make sense to research them on the Mayo website before making your appointment. I hope this information is helpful. Wishing you the best! ~Robyn
Replies to "@dbeshears1 Hi Debbie- I wanted to follow up with you, as promised. I had my Mayo..."
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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Thanks for sharing Robyn! I am glad you were so pleased. Isn’t the largest part of our battle and acceptance having the right doctor who you feel has been thorough in concluding the final diagnosis (or non-diagnosis), understanding, compassionate, helpful, and a true partner in helping adjust to our conditions and maximize our utility and comfort going forward? It sounds like you found that with your Mayo doctor and experience, and I am very happy for you!!
Wow on the pain management program. I would have never guessed it was such a long program, but I’ve heard a few others on here talk highly of Mayo’s program. I guess like Physical Therapy and other treatments, it takes many sessions to adjust and learn best ways to relieve and strengthen the areas needed and develop new habits, which invariably helps our mental status while we live life as full as possible. It sounds like with the Mayo program, you get the great benefit of being observed daily to make sure you start out on the right course, and make adjustments immediately if needed to have you steered in the right direction up front for optimal success in treatment. That sure beats the approach most of work out with doctors: trying one thing, followup next appointment in month or two, try something else, and 2 years later they’re still working at the right formula. It sounds like Mayo likes to cut ti the chase and get it right as possible up front!
I’m so happy to hear if your positive experience, and again, thanks so much for sharing, and and giving us hope for experiences like yours! Keep fighting!