Autonomic Nervous system vs dysautonomia

@dbeshears1 Hi Debbie - thank you so much for the information. I’m intimidated by the process yet not able to continue working. I also keep hoping it will get better or I can find better treatment but that’s not happening. Do you mind sharing if you applied for disability with “neuropathy” or something else?

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Sure, it was idiopathic neuropathy only. Any other health woes I may have today are post-neuropathy onset. The neuropathy has limited the use of my hands and feet. My professional requires a lot of computer proficiency and my fingers don’t type adequately. Carrying things to meetings would require assistance that companies, even large ones, can’t afford. If I had a talking/mental job, I could probably do it, but medications have side effects to deal with. I think the bottom line would be how your main doctor caring for you assesses your ability. The sad thing is, we all believe the system has been abused, and it has… so sadly, it makes it harder and intimidating for those in real need to apply and prove.

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@dbeshears1 Thanks again. Yes, sadly the system has been abused. Like you said, I would much rather work, feel well enough to do so, and make my full salary I worked so hard to achieve. I have idiopathic small fiber neuropathy and autonomic neuropathy. So far I haven’t found medication that helps with the widespread pain, daily constant headaches, and all the symptoms of the autonomic dysfunction. I have an appointment with Mayo Neurology in a couple weeks. They’ve already ordered more tests based on the medical records I sent them, despite the positive diagnosis from the punch biopsy, so I’m hopeful for better care and insights for my condition. I appreciate all that you shared with me! Wishing you well. Hugs! Robyn

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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

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I agree with you 100%. I get the distinct impression from far too many of these doctors and even the nurses that respond to my portal messages basically begging for help and begging for different tests that I'm finding out they've never done on me and almost 3 years time frame and there's no reason for it but I get the impression from a lot of them that they are bothered because I'm still struggling trying to find out what's wrong with me and asking questions as to like why have you not done yet in 2.5 years these small fiber neuropathy biopsy? They get annoyed and they seem annoyed and perturbed that I'm bothering them or that they don't like that I'm being my own advocate.

I'm not going to go home and sit back and just live with it and I'm not going to go home with a prescription for an antidepressant and chalk it all up to anxiety. I am absolutely fed up with this crap. I've even reached out to the local media including the newspapers to do a story on this because this is how pissed off that I am at the majority of the medical doctors that shrug off people that are suffering day in and day out with debilitating symptoms and you can't collect social security disability cuz you've not been diagnosed with anything but it's impossible to hold down a job with these symptoms yet these doctors act like they do not give a darn. I've now pushed my doctor asking why he's not done an MRI of my brain? To rule out a brain tumor or rule out MS or anything else that might be going on in my brain that it could affect me neurologically whether my autonomic nervous system or my central nervous system or whatever else could be affected by something going on in my brain. I've had to beg them to do a blood test that I researched and found out is a very good blood test to do looking for cancerous tumors in your body that you are not aware of yet yet the cancer cells are being dispersed through your body and they do affect your nervous system and they can cause autonomic nervous system problems and they can cause muscle twitching and everything else and it's a blood test called perineoplastic yet I'm the one who had a research it and ask them to do it to rule out cancer

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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

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@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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@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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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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