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With So Many Diff Forms Of Dysautonomia, How Do You Learn Which One You Have?


IDreamInColor
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The symptoms all seem so similiar with the various forms of dysautonomia. My doctor diagnosed me with dystautonomia, and when I inquired on which form he said it was "probably" pots.

How can they know for sure? All the symptoms seem so simiiar. With my intense myoclonic jerks I'm thinking it's something more than POTS, because not too many of you people with POTS seem to have these jerks.

UGHHH< I need Dr House,,,LOL, he'll make me cry, but at least he'll figure out whats wrong with me ;)

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Yes, I had a tilt test, but I had been on fludrocortisone for 3 weeks prior to the doctor running the test. The fludrocortisone made my blood pressure behave while on the table, however I did experience myoclonic leg jerks, and a nauseous hot flush. I have no idea why the doctor didn't run the test before he put me on fludrocortisone. The doctor diagnosed the dysautonomia just after the test.

I had the test at the end of September, I have declined quickly since then and I have no doubt whatsoever that I would definately pass out if I were to do the test again.

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I have POTS and also get myoclonic jerks - mostly in my legs and face.

I believe the TTT is where you get the distinction. With POTS, you see the HR increase. There are differences in each form of dysautonomia, unfortunately I'm not educated on all of them enough to really answer it. =/

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I had an abnormal TTT& QSART and a huge drop in Blood pressure by 50 points upon standing for 3-5 minutes to 60/40 blood pressure that gave me the diagnosis of Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). I didn't pass out during the TTT. They didn't even have to raise me up only to 45 degrees when I showed a significant drop in Blood pressure without passing out. I was on Florinef too about 10 days when they did the test. I think everyone here will tell you that we all have some similar symptoms and disease processes to get our diagnosis, yet we have differences because we are all different. The key is to find a treatment that can help control your symptoms,get you feeling better and helping you be able to have some quality of life again because we all no there is no cure as of yet for Dysautonomia. Keep working to find the right doctor and treatment to get your answers. :)

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  • 2 weeks later...

I had 2 TTTs and grafted my BPs and HRs daily on MedHelp to take to my doc and cardiologist. Fit POTS in 2010 but cardiologist referred me to cardiac specialist in dysautonomia in spring 2011. I got in in Oct 2011. First thing they did was sitting, then standing BP and had me sit down. I had purple feet (along with my records and grafts and testing results from endocrine system, neuro exam and tests for other afflictions), he'd diagnosed me with orthostatic hypotension, telling me that a year ago it was POTS but now this and that my autonomic nervous system was failing.

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There are various tests done at various facilities (no one facility does them all) that may lead you in a specific direction on the "type" you have. There is the TTT but also an autonomic panel of testing including the Val Salva test, controlled breathing test etc and then also the thermoregulatory sweat test, Q-SART, etc. The DINET web page has a lot of info on all the different tests that they can do to help sort out which type you might have.

However, even with all that it seems that the "authorities" themselves haven't agreed on the types that exist. What one group classifies them as isn't necessarily recognized by others. For example the low-flow, high-flow categories from Julian Stuart's work aren't addressed by the docs at Mayo (that I've seen anyway). That's one of the problems for us is that the research is so (relatively) new that the nomenclature isn't consistent amongst the researchers and everyone still is working on their various theories and trying to prove or dis-prove them.

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