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Autonomic Nervous system vs dysautonomia
Neuropathy | Last Active: Jun 1, 2022 | Replies (45)Comment receiving replies
Thanks Robyn - Hugs to you too! I'd like to hear how your Mayo visit goes. Jacksonville would be about an 8 hour drive for me, but I am considering getting a referral there. Duke is 5 hours, so still an overnight, so I would prefer Mayo. I went to Duke once, at onset, but they did nothing at all but review what my local neurologist in Myrtle Beach and "specialists" at MUSC in Charleston did (I lived in SC at that time). Both Duke and MUSC added nothing to my care but a lot of out of pocket $$$, to tell me we should just wait 6 months and see what happens!! Well, it's been 5 1/2 years of "watching to see what hapens"; I decided I didn't need to travel back to Due or MUSC since neither of them could explain next steps or an action plan before me putting out more $$$ and enduring the travel hardships associated with being disabled and needing assistance. So we moved to the Charlotte area of NC and hope I can get care locally without travel hardships. When we moved here, it was at the Pandemic start, and I came with a throat cancer diagnosis (long story of another MUSC error of not telling me or primary doctor of an abnormal growth they found in a CT Scan a year earlier... I found & read the test result myself when I was collecting records for my move to NC). Anyway, cancer tests and treatment became the priority for a year; so after 5 1/2 years, I have started to advocate and push more to stop the "let's watch and see what happens" and do whatever tests and explorations that might make sense to do; and, for what we just really aren't able to figure out after trying, to help provide medical guidance and therapy on how to best manage the condition. I have learned so much from this forum here, the mentors and facilitators and contributors here are so helpful and encouraging. I wish you well, please let me know how Mayo goes! Debbie
Replies to "Thanks Robyn - Hugs to you too! I'd like to hear how your Mayo visit goes...."
@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
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Wow, what a journey you have been on! I’m so sorry for all you’ve been through! If we aren’t our own health advocates who knows where we’d be. I am very grateful for my original neurologist, after years of not knowing what was wrong with me, he knew what it was with just our first visit, then did the biopsy to confirm. We haven’t made any progress with any treatment which is why I am going to Mayo. They are only a 45 minute drive for me, I am very fortunate. Between the appointment with the neurologist and the tests, it will be close to a 6 hour visit! I’ll let you know how it goes! I agree, this forum has been so helpful! I’m very grateful to have stumbled upon it! I’ll reply back after my 4/29 visit. Robyn