Autonomic Nervous system vs dysautonomia

My symptoms began when I lived in Augusta Georgia and then I moved to Lakeland Florida and had a neurologist and an endocrinologist and a cardiologist and a primary care doctor in Lakeland Florida and now I'm down in Venice Florida living here for my retirement years or what's left of them, I'm 61 years old but I have felt like literal crap for 2.5 years now.

It is a long haul! Multiple diagnoses, misdiagnoses, and everything in between. You are left fight for your life so you do it. I’m a nurse and am still fighting for appropriate timely care in my area. I was first diagnosed with MS at age 28 after that all of my autonomic nervous system dysfunction got thrown in that bag even other stuff that could not make sense. More often than not health care wants things tidy, they don’t want to go searching if they don’t need too. Now I’ve had weird stuff as soon as I hear “Rare” I know it’s me they are talking about. As one of my favorite Drs says “Elizabeth you just never vanilla.” Now seriously I want to be vanilla, plain vanilla.
I’m 61 yrs old and tired of getting a new diagnosis every time I turn around. Do any of you have arrhythmias from the cardiac side? I use to be just really bradycardia (slow) ❤️Rate then it got fast now it’s crazy and I’m on meds that don’t effect the blood pressure.
Now I don’t know why I am growing nerve sheath tumors along my spine. No idea it’s not cancer but the two found so far are inoperable slow growing off the spine. Like a little farm, you grow one you grow more. Like I said rare suupposivily. Something I am just finding out about.

Welcome @lizbhere, I'm pretty sure you are not alone with being tired and getting a new diagnosis every time you turn around. You mentioned having arrhythmias. I'm wondering if you might find this post by @colleenyoung helpful in the Sudden PVCs with congenital heart disease discussion - https://connect.mayoclinic.org/comment/613990/. She has a link to an expert blog post and video that might be of interest.

– Congenital Heart Disease Arrhythmias March to Their Own Beat https://connect.mayoclinic.org/blog/congenital-heart-disease/newsfeed-post/congenital-heart-disease-arrhythmias-march-to-their-own-beat-2/

Mayo Clinic has some information on spinal cord tumors that may provide a little more information -- https://www.mayoclinic.org/diseases-conditions/spinal-cord-tumor/symptoms-causes/syc-20350103

Being a nurse, I imagine it makes it even more stressfull when you don't have all of the answers. Have you done any research on the nerve sheath tumors?

Thank you for thinking of me, I just started to go to a chiropractor that does Cervical nerve adjustments. Strange I only went to the appointment once for initiation I go again today, I’ve tried anything I can think of. Thank you again

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

I don’t understand why we have to struggle to get help.

I feel you exactly. I would check on disability though, I honestly had no problem on that part, though what I get is a very small fraction of what I was making as a Global Finance Manager.
I will honestly say I’d be ok being told they won’t do this or that, if they take 30 seconds to explain to me the rationale. If they can’t explain, or TALK to me about how to physically live with this to maintain what mobility I do have, then I’d like them to point me in directions to resources that can help. Like you, I have to research things, beg for physical therapy, podiatrist, tests… and for the life of me I do not know why he won’t do an MRI or blood work for certain metals and cancers. Anyway, communication is key. My SC neurologist was OK, but my new one in NC is very very sad. But, that’s why I want a new one, to get fresh eyes maybe, and hopefully better ideas and communication. I might find it doesn’t exist here, but I’m giving it a try. It has been almost 3 weeks since my referral to get new doc in my current health network, but the only communication I’ve gotten is that the referral has been received and they’re reviewing, and that it normally takes 2 weeks to process. I’m giving them some grace period since it’s Easter and Spring Break time.

@dbeshears1 Hi Debbie - I’m sorry to hear you’re also experiencing trouble getting quality care that you deserve. Seems like so little is known about neuropathy or how to treat it. Can you share more about your process to go on disability? Was it accepted the first time applying or did you have to appeal? Did you use an attorney?Did you file based on neuropathy alone or other conditions? Thanks for any insight you’re willing to provide.

So many people told me that “everyone” gets rejected for Disability, so get an attorney up front. So I consulted a very nice specialized attorney who said “My dear, it’s really not that difficult of a process when you’re disabled, please go through the SS Disability application process, then if you get rejected, you should contact us. We shouldn’t get paid a cut of what you’re entitled to!”
I was surprised at his tone vs “everyone else’s” advice, so I applied. Yes it seemed like a lot of work. You could either have copies and fax/mail a lot of records, or just give them a name of all doctors and hospitals etc, and submit SSA a release form so they could collect the records on your behalf. Since my mobility was limited, and the paperwork to fax would have been enormous, I let them do the work.
I think you have to wait 18 months of being disabled before it kicks in, but I didn’t apply until 2 yrs after disability start. I guess I had hoped I’d get better. I was scheduled a phone call with the SS Disability agent, and he asked basic physical performance questions, and 2 weeks later I was approved. The whole process took 5 weeks most? And, since I applied late, they sent a lump sum payment for the 6 months I missed by not applying earlier.
So, I thought it was a reasonable, fair process to be honest. I will be subject to occasional followup for continuation, I think within 5-7 years, so any time now. I’m not happy to not being able to work and have the wages I was accustomed to after working 30 years, but this helps pay the bills. At some point they required me to start getting Medicare (and paying for it of course). At first I wasn’t happy for extra expense since I had other insurance, but that too had actually been a benefit given the medical expenses we have with this illness.
I hope that helps. I truly think the Disability system is designed to work for us in need, though I agree the initial paperwork can be cumbersome.

@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?