Autonomic Nervous system vs dysautonomia

@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

Robyn, Thanks so much for getting back to me. I have written a synapses of my history & associated symptoms. Apologize for length. I have a long complicated medical history.
1. I applied to the Mayo Clinic in Rochester, Minnesota 2010, 2013 & sometime after 2016 when I stopped working.
2. Symptoms: In 20’s developed GI pain, so severe GI specialist put me on elavil. Had GI pain & severe GI motility issues on & off since college, esp. since 2013 through now.
2000- after Flu severe chronic pain & pressure headaches in late 2000 early 2001. Took 2 years to control. Also had odd feelings on left side of my body, (start of my neuropathy?).
2006- Chronic headache back, In patient DHE treatment again at TJU.
2007 Fall -Start Entire Body pain. Diagnosed-Fibromyalgia by family Dr & Neurologist. Tried different SSRI’s and increasing elavil & other tricyclics, not much help. Rheumo. started tramadol. Different treatments Fibro Treatment Center, no help. RX’s from Family Dr, Neuro & Headache Neuro. ER Tramadol most helpful body pain.
2009 Body Pain worse again, tried other RX’s like cymbalta, no help. Increased tramadol helped.
2009 treatment in pain management program, including aggressive PT. Started on low dose Gabapentin, did not help. Tramadol only thing helping pain.
2012-2013, more severe GI problems with upper right quad other stomach pain as well as nausea. GI Dr tested found delayed Stomach emptying & delayed intestinal motility.
2013 Brain fog starts, worse now
2014 I had suffered with episodes of feeling faint and rapid heart rate (HR) on & off since my 30’s. Few ER trips no findings. Episodes more frequent since 2014 .
2015 After heart rate, blood pressure, feel pass out several times diagnosed with Pots & Disautonomia by a Dr who was the only Dr In my area who was Familiar with these syndromes. Family Dr. recently familiar with diagnosis’s.
2015 Neuropathy/Severe burning pain started in my feet and hands, now it’s more pronounced throughout my entire body.

2016 Had 2 tilt table tests for Pots. 2016 showed nothing, 2019 test Positive for Pots.
2016, Due to Pots, Disautonomia and severe body pain I had to go out on LTDisability. My symptoms have been getting worse ever since.
In 2017, higher dose GABA. Helps.
2019 New Neuro Dr found moderate to severe Small Fiber Neuropathy after skin biopsy.

I am on many RXs including Gabapentin, Tramadol, Cymbalta (higher dose now helps), Nadol, mididrine and others.

I hope to be seen by Mayo so that the group that is multidisciplinary or anyone there can take a look at my overall symptoms and different medical issues throughout body & find cause of Overall Disautonomia. Biggest concern is my Neurological deterioration.

Sorry so long, hope info helpful.
Thank you, Liz

Robyn, Thanks so much for getting back to me. I have written a synapses of my history & associated symptoms. Apologize for length. I have a long complicated medical history.
1. I applied to the Mayo Clinic in Rochester, Minnesota 2010, 2013 & sometime after 2016 when I stopped working.
2. Symptoms: In 20’s developed GI pain, so severe GI specialist put me on elavil. Had GI pain & severe GI motility issues on & off since college, esp. since 2013 through now.
2000- after Flu severe chronic pain & pressure headaches in late 2000 early 2001. Took 2 years to control. Also had odd feelings on left side of my body, (start of my neuropathy?).
2006- Chronic headache back, In patient DHE treatment again at TJU.
2007 Fall -Start Entire Body pain. Diagnosed-Fibromyalgia by family Dr & Neurologist. Tried different SSRI’s and increasing elavil & other tricyclics, not much help. Rheumo. started tramadol. Different treatments Fibro Treatment Center, no help. RX’s from Family Dr, Neuro & Headache Neuro. ER Tramadol most helpful body pain.
2009 Body Pain worse again, tried other RX’s like cymbalta, no help. Increased tramadol helped.
2009 treatment in pain management program, including aggressive PT. Started on low dose Gabapentin, did not help. Tramadol only thing helping pain.
2012-2013, more severe GI problems with upper right quad other stomach pain as well as nausea. GI Dr tested found delayed Stomach emptying & delayed intestinal motility.
2013 Brain fog starts, worse now
2014 I had suffered with episodes of feeling faint and rapid heart rate (HR) on & off since my 30’s. Few ER trips no findings. Episodes more frequent since 2014 .
2015 After heart rate, blood pressure, feel pass out several times diagnosed with Pots & Disautonomia by a Dr who was the only Dr In my area who was Familiar with these syndromes. Family Dr. recently familiar with diagnosis’s.
2015 Neuropathy/Severe burning pain started in my feet and hands, now it’s more pronounced throughout my entire body.

2016 Had 2 tilt table tests for Pots. 2016 showed nothing, 2019 test Positive for Pots.
2016, Due to Pots, Disautonomia and severe body pain I had to go out on LTDisability. My symptoms have been getting worse ever since.
In 2017, higher dose GABA. Helps.
2019 New Neuro Dr found moderate to severe Small Fiber Neuropathy after skin biopsy.

I am on many RXs including Gabapentin, Tramadol, Cymbalta (higher dose now helps), Nadol, mididrine and others.

I hope to be seen by Mayo so that the group that is multidisciplinary or anyone there can take a look at my overall symptoms and different medical issues throughout body & find cause of Overall Disautonomia. Biggest concern is my Neurological deterioration.

Sorry so long, hope info helpful.
Thank you, Liz

@lahjuly4 Hi Liz-
You sure have been through a lot. Do you know why Mayo declined to see you? Perhaps dig into the reason and go from there.

I have experienced much of what you described. I am 44 now and started going to doctors for headaches, irregular heartbeat and “IBS” since my early 20’s. I was diagnosed with fibromyalgia in Aug 2021 then went to a neurologist who did the skin punch biopsy and diagnosed me with SFN/autonomic dysfunction. I asked the neuro if that meant I did not in fact have fibromyalgia and he said the neuropathy caused fibromyalgia. I haven’t asked my Mayo neuro that question yet but I will on Friday when I see her.

Have you been tested for every autoimmune disease under the sun? My Mayo neuro said it’s rare that someone my age (who has likely had this for many years) would have SFN without an underlying cause, so she has been testing me for all kinds of things. I wonder if you could have an underlying cause.

What I like about Mayo is, while my neuro is my main doctor, she partners with all the departments/specialists to make sure I get the care I need. I recommend that you call Mayo to inquire why you’ve been declined and assuming you can get past that, request an appointment with neurology. As you mentioned, you need multidisciplinary care and Mayo certainly covers everything. The neurology department will partner with others there on your behalf and guide you in the right direction.

Maybe you can give Mayo Rochester a call (507-538-3270) and inquire about an appointment with their neurology department. Even if you have to be placed on a waitlist, it would be worth the wait.

Will you let me know if you call them and the outcome? I can only guess you’ve been declined because of either insurance or patient capacity limits.

PS, my Drs no longer believe I have Fibro. The neuropathy I feel throughout my body is thought to be the cause of my body pain.