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Autonomic Nervous system vs dysautonomia
Neuropathy | Last Active: Jun 1, 2022 | Replies (45)Comment receiving replies
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
Replies to "I agree with you 100%. I get the distinct impression from far too many of these..."
Joanne, I’m so sorry you are going through this. A lot of us that have Small
Fiber Sensory Neuropathy and Autonomic Neuropathy had to deal with exactly what your going through. I know you must feel like the doctors think it’s all in you head, but it’s not. Please consider finding a neurologist who deals with just neuropathy’s. That’s when my treatment turned around and I finally found someone who knew the disease inside and out. Until you find a neurologists like that you are probably going to not get the help you deserve.
My heart goes out to you.
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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.