I Was Told By A Neurologist That....

[cardiactec]

i was just recently told a neurologist that POTS isnt considered a "true" dysautonomia and NOT to refer to it as a dysautonomia???? so what the heck is it then????

[Dizzy Dame]

I think your neurologist is wrong. POTS is a dysautonomia in most cases, meaning it's caused by a dysfunction in the autonomic nervous system. I know of some cases where POTS can be caused by vasuclar damage, but even then, the symptoms have to do with the autonomic nervous system's compensation.

[corina]

i was told by my neuro lately that there is a difference in thoughts about dysautonomia. some doctors think of it as a disease that can even make you disabled, others think of it as something that isn't a real disease and doesn't need to get too much attention. i didn't ask him on which side HE is,

corina

[morgan617]

It means some doctors can't admit they don't understand the entire universe.

There are so many names for these problems but the underlying problem is autonomic dysfunction...so duh...

[Jacquie802]

I was actually told by my old neuro just to take Ibuprofen for the POTS, since that med can raise bp...nice, eh?!

[the_dancer_grl]

I've had one doc. tell me NCS wasn't a dysautonomia and another one say it was (I think its because alot of docs don't know alot about dysaut.) so don't feel alone on the confusion front.

[MomtoGiuliana]

My electrophysiologist uses the term autonomic dysfunction and POTS interchangeably when he discusses my condition with me--POTS being a type of autonomic dysfunction. I'm not sure I understand why there would be any controversy among physicians.

Katherine

[MightyMouse]

I think that the neuro is probably biased by the term "familial dysautonomia", which is a genetic disorder...that would at least be my guess. And, for the record, your neuro is incorrect. If you break it down to the prefix and base word, "dys"

Definition: prefix (dys-) - abnormal, impaired, difficulty

and "autonomia" referring to the autonomic nervous system

then, we pretty much all can agree that POTS is a type of dysautonomia. Nina

[scarfgirl]

So what does he consider a TRUE dysautonomia?

[cardiactec]

he considered "true" dysatuonomia's as things like peripheral neuropathy's, shy drager, and pure autonomic failure. he said pots was an extremely mild issue and not a TRUE dysauto. really made me quite livid to hear him say that because it sounded like he really didnt care anymore about pots and trying to find out it's causes/where it all stems from/etc.....i have seen him for the past three years and i have seen his whole attitude lately change about pots in general. unless you have peripheral neuropathy, small fiber neuropathy, shy drager, or something than POTS is just "nothing to worry about" and "not even considered a dysautonomia".............................

oh yeah, and when i asked him about my recent diagnosis of gastroapresis, he also said that gastroparesis had nothing to do with pots or autonomic dysfunction. i totally disagree.

[cmtaylor5]

I tend to agree with Morgan on this one!

My new neurologist that I'm seeing for neck problems, told me that "Eventually all you women will realize that POTS is just PAT and it has nothing to do with neurology." I was pretty stunned by his remark. I asked him if he was under the impression that I had never captured my arrythmia on an EKG or Holter monitor. He said, "You mean you have captured it?" I said, "Well, that's not really too tough to do, since when I'm not medicated, it happens every time I stand up! And, by the way, even with rates over 190, it's never a PAT! It never originates in the atrium. It's always good old sinus tachycardia."

His response was "Oh, it is? So, I guess you know what a PAT is, then?" I'm thinking, "Why not just admit that you know nothing about this?!" I have never discussed the weird shortness of breath, the unequal dilation of my pupils, the gastric emptying issues, the disequilibrium, etc... or any of the other weird things that I suffered from before my diagnsosis. I think with a doctor like this, it's not worth it.

Carolyn

[Guest dionna]

okay, the papers sent in for my military discharge say "AUTONOMIC NERVOUS SYSTEM DISORDER" just like that in caps. the papers i signed say the "Unfitting Conditions" are POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME / MIGRAINE HEADACHE.

therefore the United States Marine Corps and the United States Navy classify POTS as a form of Dysautonomia.

dionna

[scarfgirl]

he considered "true" dysatuonomia's as things like peripheral neuropathy's, shy drager, and pure autonomic failure. he said pots was an extremely mild issue and not a TRUE dysauto.

That's like saying rheumatoid arthritis isn't a real autoimmune disease b/c Lupus and MS are more systemic. Definitely time to find a new doctor.

"Eventually all you women...

Statements like that are why I only see female doctors unless the male doctor comes HIGHLY recommended. Medical doctors often display a level of sexism you don't usually see among people of equal education. But that's ok, because the majority of people graduating from med school these days are women so that'll be changing real quick.

[dizzygirl]

geesh! sounds like that neurolgist needs his freekkin' head examined!

[cardiactec]

haha! dizzygirl, i agree! a head examination might do him some good!

it is really quite disheartening to me to see this neuro, who used to seemingly care about pots and want to find out more about it's root causes/etc, and now, three years later, POTS he makes sound like it deserves no attention, recognition, or care because it is "Nothing" ..........i cant even stand it!

[vemee]

I had an electrocariologist tell me and my work there was no reason for me to stay out of work because I only had mild pots. This was after a tilt table test where I passed out and went into seizures after receiving nitro. The doctor was very negative about me when the county lawyer interviewed him . I had to go to Cleveland Clinic to prove I had severe pooling (44%) to be taken seriously. I eventually found a good local cardiologist who supported me even though I still had to retire as a firefighter.

okay, the papers sent in for my military discharge say "AUTONOMIC NERVOUS SYSTEM DISORDER" just like that in caps. the papers i signed say the "Unfitting Conditions" are POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME / MIGRAINE HEADACHE.

therefore the United States Marine Corps and the United States Navy classify POTS as a form of Dysautonomia.

dionna

If the US. Marine Corps says it is a form of dysautonomia then it is. Semper FI.

[BEE]

I agree on all of it..dizzy especially your statement. My autonomic papers from the tilt say SEVERE sympathetic dysfunction..I thought the sympathetic system goes along with autonomic if I am not mistaken.

ANd I have POTS,small fiber neuropathy and periphial neuropathy. Hmmm...not sure if they are all the same or not.

But that doc..needs to have an MRI of his brain becasue obviously he has a bit of brain fog going on.