Autonomic Nervous system vs dysautonomia

I don't see anybody commenting yet I hope someone does but I still cannot find out anywhere if you do not fit into the 15 categories of dysautonomia can you still have autonomic nervous system malfunction? I'm having to switch neurologist again because this neurologist in Tampa Florida has not been one bit helpful and basically pushed me off on the Mayo clinic out of Jacksonville which is 8 hours away from my house but the Mayo clinic called me last night and they have a 1-year waiting list to be seen by a neurologist at Mayo clinic in Jacksonville Florida. Like my current neurologist in Tampa Florida thinks I should suffer another one full year with these symptoms and I have any answers! And then I ask my neurologist why he has never done a small nerve fiber biopsy on me to rule that out and he said that his group of neurologists do not do that specific test and he told me to go to a different neurologist now in Tampa that does that test so I'll be starting all over again with another neurologist over these last two years.

Anyone out there with any input as far as these 15 categories of dysautonomia and might not fitting into any of those categories yet it seems like I have autonomic nervous system symptoms for almost 2 years now I'd greatly appreciate any input because I'm totally disgusted with a lot of the specialist doctors I've seen over the last two years. Absolutely pitiful. And the very good doctors at Mayo clinic have a one full year waiting list to be seen. Unbelievable. What a nightmare.

This neurologist is from somewhat of a large neurology group out of Tampa it's him and I think three other neurologists and when I informed him last week that I was being told about this small nerve fiber biopsy to rule out small nerve fiber neuropathies He said he nor the other three neurologists in his office do that test and that I would have to find a neurologist that does it. He gave me a name of a neurologist but of course I'm then starting all over again with a neurologist as a first time new patient and the wait list is like 5 months and I'm just so tired of this. I cannot believe that a large neurology office in Tampa Florida and they do not do this small nerve fiber biopsy test. It's just absolutely ridiculous I've been run ragged for almost 2 years now with being misdiagnosed one doctor says one thing and other doctor denies what the other doctor has for a diagnosis it's ridiculous and I'm stuck in the middle. You don't know how sick I am I'm just sick inside and out of it all. I feel like I'm just a dog chasing my tail with these doctors.

This neurologist is from somewhat of a large neurology group out of Tampa it's him and I think three other neurologists and when I informed him last week that I was being told about this small nerve fiber biopsy to rule out small nerve fiber neuropathies He said he nor the other three neurologists in his office do that test and that I would have to find a neurologist that does it. He gave me a name of a neurologist but of course I'm then starting all over again with a neurologist as a first time new patient and the wait list is like 5 months and I'm just so tired of this. I cannot believe that a large neurology office in Tampa Florida and they do not do this small nerve fiber biopsy test. It's just absolutely ridiculous I've been run ragged for almost 2 years now with being misdiagnosed one doctor says one thing and other doctor denies what the other doctor has for a diagnosis it's ridiculous and I'm stuck in the middle. You don't know how sick I am I'm just sick inside and out of it all. I feel like I'm just a dog chasing my tail with these doctors.

You could ask him to call the neurologist whose name he provided and advocate for you to be seen sooner.

I don't see anybody commenting yet I hope someone does but I still cannot find out anywhere if you do not fit into the 15 categories of dysautonomia can you still have autonomic nervous system malfunction? I'm having to switch neurologist again because this neurologist in Tampa Florida has not been one bit helpful and basically pushed me off on the Mayo clinic out of Jacksonville which is 8 hours away from my house but the Mayo clinic called me last night and they have a 1-year waiting list to be seen by a neurologist at Mayo clinic in Jacksonville Florida. Like my current neurologist in Tampa Florida thinks I should suffer another one full year with these symptoms and I have any answers! And then I ask my neurologist why he has never done a small nerve fiber biopsy on me to rule that out and he said that his group of neurologists do not do that specific test and he told me to go to a different neurologist now in Tampa that does that test so I'll be starting all over again with another neurologist over these last two years.

Anyone out there with any input as far as these 15 categories of dysautonomia and might not fitting into any of those categories yet it seems like I have autonomic nervous system symptoms for almost 2 years now I'd greatly appreciate any input because I'm totally disgusted with a lot of the specialist doctors I've seen over the last two years. Absolutely pitiful. And the very good doctors at Mayo clinic have a one full year waiting list to be seen. Unbelievable. What a nightmare.

Thank you. It should never be this difficult in such a medically advanced country as America for our citizens to have to go through years and years and years worth of doctors and test and still not know what's going on and any other real good facilities want an arm and a leg financially for you to go see them so it only seems people that have deep pockets or very good medical insurance can get adequate health care by doctors that know what they're doing but instead many of us who are average Joe Americans have these doctors that could either care less, do not really act like they have the time to dig into the symptoms and where they may lead and all they want to do is quickly write out a prescription pad script for anxiety or antidepressants. I'm so tired of it

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.

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