Jump to content

Is Dysautonomia Accepted As A Medical Term?


Elenapap11
 Share

Recommended Posts

I was discussing with a doctor yesterday and when i told him that i have dysautonomia he said that is not an accepted medical term and that it is not accepted in the medical dictionary.Is that true or was he just another ignorant doctor?I told him that in the U.S.A there are many people who are diagnosed with it-and i was too here in Greece by another doctor-but he kept saying that there is no scientific proof that dysautonomia is a health problem on its own.Is dysautonomia the correct medical term for what we have?When you fill in a health record do you mention dysautonomia or do you refer to it as vasovagal syncope/CFS/or something else?

Link to comment
Share on other sites

Rather than head over to a medical dictionary, I went to the website many doctors use you look stuff up: the National Institutes of Health. They not only define the term, but have a full page dedicated to describing fully what it is, how it happens, etc.

http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

Link to comment
Share on other sites

oh, and if your doctor is being really fussy, you can separate it into "autonomic dysfunction" as that says it all. What's more, there's a very well established condition (genetic, mostly seen in Jewish families) called familial dysautonomia...

Oy. Some doctors can be so hard headed.

Link to comment
Share on other sites

Thank you all for your replies.Mighty Mouse next time i see him i will give him the address of the website.Some doctors are just so obnoxious.Instead of giving me any kind of advice he started lecturing me about how patients overreact and try to play doctor.(!!!)Obviously he was clueless.

Link to comment
Share on other sites

If you have a diagnosis then it is best to use specific terms to define your condition but if like me however you have a bizzare version of autonomic dysfunction with only a partial diagnosis and a whole bunch of undiagnosed symptoms effecting your vitals and autonomic function then its best to say "Dysautonomia" as I always do.

Link to comment
Share on other sites

I had one doctor act weird about my use of the term dysautonomia...she said 'so what!' Then she said, 'dysautonomia is like saying you have a fever! who cares if you have a fever - what we want to know is what 'causes' the fever! To which I replied well okay wouldn't it be likely from joint hypermobility syndrome? Then she said 'well maybe it is - and I don't treat dysautonomia from that - only MS etc..' So just another tale to tell I suppose. I'm still in the dark about my symptoms - which seem to be a sort of hyperadrenergic state, chronic pain, maybe some OI, definitely hypertension - but I'll keep pursuing things as I am and hopefully something will turn up that's treatable.

Link to comment
Share on other sites

Just today, when discussing my health history with a new podiatrist (foot doctor), I checked "yes" next to low blood pressure. When he asked me "do you have low blood pressure?", I said "sometimes". "I have a malfunctioning autonomic nervous system." He seemed satisfied with that. Then, when discussing my GI system, I said that my gastrointestinal system is always malfunctioning. I have had irritable bowel my entire life. They are all related.

I try to explain my condition in the simplest terms possible with as few words as possible, and only elaborate if they are interested.

Link to comment
Share on other sites

They all say pandysautonomia to me. ever doctor that reads my chart even the new ones that do not even know what it is call it that. so I take it as yes. The pan is just a specific type of the dysautonomia or Autonomic dysfunction. Just depends on your doctor but Dysautonomia is a medical term. it means "Autonomic Dysfunction" i guess some doctors don't like to use the smart words you got to some cardiologists they may say "heart attack" others may say the correct word "Myocardial Infarction"

Link to comment
Share on other sites

Well, the exact terms may vary, but on my record is a diagnosis & billing-code of 337.9 (various autonomic codes specified here) and generally if insurance is willing to shell out money, then you can be pretty sure that "something" exists medically! :)

2010 ICD-9-CM Diagnosis Code 337.9

Unspecified disorder of autonomic nervous system

* condition in which there is a deviation from or interruption of the normal structure or function of the parasympathetic or sympathetic divisions of the autonomic nervous system; autonomic dysfunction may be associated with hypothalamic diseases, brain stem disorders, spinal cord diseases, and peripheral nervous system diseases; manifestations include impairments of vegetative functions including the maintenance of blood pressure, heart rate, pupil function, sweating, reproductive and urinary physiology, and digestion.

Also, this "fpnotebook" outline is titled "Autonomic Dysfunction Aka: Dysautonomia, Autonomic Neuropathy, Chronic Autonomic Neuropathy". On my record is the abbrev. "AUTONOMIC NERVE DIS NEC" which is included near the bottom of the page in a list of related terms or synonyms of the family of autonomic dysfunctions.

Family Practice Notebook entry for Dysautonomia

Link to comment
Share on other sites

I had one doctor act weird about my use of the term dysautonomia...she said 'so what!' Then she said, 'dysautonomia is like saying you have a fever! who cares if you have a fever - what we want to know is what 'causes' the fever! To which I replied well okay wouldn't it be likely from joint hypermobility syndrome? Then she said 'well maybe it is - and I don't treat dysautonomia from that - only MS etc..' So just another tale to tell I suppose. I'm still in the dark about my symptoms - which seem to be a sort of hyperadrenergic state, chronic pain, maybe some OI, definitely hypertension - but I'll keep pursuing things as I am and hopefully something will turn up that's treatable.

So, ask her if peripheral arterial vasoconstriction deficiencies qualify. I don't believe that come back. We know those with EDS can have dysautonomia just due to the laxity in our veins. I hope she's the only one that is giving you a hard time there at Mayo. Hope it wasn't the doc I had there. She didn't even acknowledge POTS. She gave me all kinds of grief.

Hang in there, she is only one of probably 18 that you will see there. At least that's how many I saw.

Link to comment
Share on other sites

Thank you all for your replies.Mighty Mouse next time i see him i will give him the address of the website.Some doctors are just so obnoxious.Instead of giving me any kind of advice he started lecturing me about how patients overreact and try to play doctor.(!!!)Obviously he was clueless.

OMG that is the worst thing about some doctors. Their Egos. They think if a patient is telling them something that somehow that has something to do with them.

They can't think that sometimes we actually have valuable information to share..They can't think that we are intelligent people who have had an illness that there is not much help for so we are trying to help ourselves by educating ourselves.

The best experience I've had is where I found some info on the web and the doctor actually listened, discussed it with me and then we actually wound up treating me based on the information I brought to him..Wow..If only all doctors would be that willing to work with their patients. Unfortunately this doctor was a Gyno, so he coulnd't help me with other things.:(

I wish he was a GP.

I recently had an experience with a doctor like yours.Probably even worse..the Ego on this guy was unbelievable. He'd cut me off in mid sentence and tell me he didn't need that information. It actually to the point where I told him to let me finish my sentences. Then when he finally let me finish one , he told me "now that's the kind of thing I want to hear"...Duh..Then listen! LOL Obviously a control freak..So, I won't be seeing him again.;)

I wish I could buy some thick skin on the web somewhere.LOL I can't help being affected by doctors like this. Sometimes they make me so insecure I start doubt things that I know are right.

Link to comment
Share on other sites

I wish I could buy some thick skin on the web somewhere.LOL I can't help being affected by doctors like this. Sometimes they make me so insecure I start doubt things that I know are right.

I'm with you there. It seems like you have to gather courage before going to a new doc. I can cry when frustrated and you know if that happens I am forever labelled as a loony.

You deserve kudos for being assertive enough with that doc. It ends up being such a fine line as you want the doc to like you and do his job yet women get put down if they are assertive. I am never quick enough when challenged.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...