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Autonomic Nervous system vs dysautonomia
I have reviewed the autonomic nervous system threads as well as dysautonomia threads and I have not seen this topic addressed so I thought I would post it as a new thread and maybe I can get some answers because it seems like many doctors can't give me the right answer.
Several doctors feel I have an autonomic nervous system breakdown and then one other cardiologist thought I had Dysautonomia.
My question is there's always listed 15 different types of dysautonomias but I do not fit into any of the 15 categories.
So can I have autonomic nervous system problems and symptoms without having to be fit or put into one of those 15 different types of dysautonomia? I have not seen this address or answered anywhere and I've been searching and looking so I thought I would start a new thread. Thank you very much if anybody has any input regarding my question.
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Yes you can still have I have both. Find a neurologist who will do the skin biopsy.
I can’t help you but I am so very sorry at the level of frustration you have had to reach with this. I pray the right person will come into your path .
I was in your shoes. It took years for a diagnosis. I eventually went to a neurologist who was part of a large group as well. There was only one doctor within the group who does the biopsy, so it’s probably not uncommon that they don’t have a doctor who does the skin biopsy. I know it’s hard but make the appointment and asked to be out on the cancellation list.
You can always search for a neurologist who may take you sooner but call and make the appointment while doing so.
You could ask him to call the neurologist whose name he provided and advocate for you to be seen sooner.
I did. He said I'd have to contact them to work out insurance coverage etc. He was not very helpful.
Stanford University has an Autonomic Disorders Program at their hospital. I suggest researching it. If you decide to go, research the heck out of the various doctors on staff and pick the best one. I wish you success in getting a diagnosis and treatment.
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
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2 ReactionsI’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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2 ReactionsExactly. 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
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1 ReactionAre you in Charlotte NC? It sounds like you have my neurologist! I’m into thus 5+ yrs, 6 months of wheelchair at first, all sudden and undiagnosed. PT has helped a lot but I’m still disabled with walker and limited hands. I was found to have cancer 3 yrs later, but NOBODY tries to connect the dots with all my medical history items. As for antidepressants, I understand they supposedly have other medicinal benefits besides depression, but when I already struggle walking, I can ill-afford a drug related injury from falling because of dopiness!! Good luck with your journey too, and hope there are a lot of ideas from this forum that may help!