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Autonomic Nervous system vs dysautonomia

Neuropathy | Last Active: Jun 1, 2022 | Replies (45)

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@dbeshears1

I’d be dishonest if I said I’ve never had those thoughts, and I struggle with accepting the non-diagnosis and becoming complacent with not knowing. I do not personally know a person in my shoes, now this group introduced me to many folks who are. I’ve been advocating for myself a little louder lately, to make them at least LOOK for things or tests to positively eliminate things instead of “think” it’s something they can’t diagnose. I guess what I’d like more from a doc at this point, vs one pushing antidepressants like you said, is one that shows compassion and understanding of what we’re living with and how our lives have changed, and offers more time to TALK his thoughts vs just check a couple of boxes and say I’ll just see you again in 6 months.

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Replies to "I’d be dishonest if I said I’ve never had those thoughts, and I struggle with accepting..."

Exactly. I agree totally with what you said. It saddens me greatly that so many doctors just seem nonchalant about how these debilitating symptoms have destroyed our lives. I'm fed up with them guessing at what's wrong where several doctors now have completely misdiagnosed me while others are way too quick to blame it ALL on anxiety and they want to put you on these nasty anti depressants that cause when more bad side affects. I'm NOT depressed, I have debilitating symptoms that have ruined my life for 2.5 years now. Far too many doctors will enter the exam room with their hand still on the door knob ready to leave the room withOUT really LISTENING to me and my symptoms. I stopped them quickly when they break out their Rx pad to write a anxiety prescription. I'm through with this lame ridiculous way of medicine in America.

I have heard hundreds of horror stories where patients just like me had horrible debilitating symptoms yet the doctors ears were turned off to hearing about the symptoms or they refused to really put much effort into digging deep into what it could really be and then years later after these patients have suffered they find out they really had cancer growing in their body whereby the time it was so advanced it was too late. These doctors need to open up their ears and stop over booking patients that they enter your room and within two minutes they're leaving your room because they're overbooked for the love of money. I'm sick of it

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