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How do I know what I really have?


Foxyblue
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Hi everyone,

I was just reading about some of the other forms of dysautonomia. I can't figure this out because it seems like I have a few symptoms of each different disorder. I was diagnosed by a cardiologist after my tilt test was postive, diagnosed with POTS. But- what if it is another form of dysatonomia? I don't know what my next step should be. The cardiologist rxd midodrine which I have yet to take and he said we could just "talk on the phone to handle my treatment." I need to do something as I feel my symptoms are only worsening and summer is coming.......Does anyone have any suggestions?

Thank you,

Bri

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Try the midodrine.

At this point, with the available knowledge the meds would not change even if you had some other form of dysautonmia. The only thing that would really change would possibly be which meds were tried first on you but as many here can tell you, many of us have tried them all.

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If you were diagnosed with POTS from a tilt table test you may get a variety of symptoms - im sure everyone here has there own peculiar symptoms - most because of sympathetic overactivity.

POTS is fairly common when compared to other dysautonomic dysfunction - it is more likely you just have POTS than somethng else - talk to your doctor, but remember they know what they're doing.

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I think Ernie is asking the right question - what happened on your TTT? You could faint, have your BP drop and/or have your heart rate go up. Depending on these, it generally tells you what form of dysautonomia you have. If you look in the NDRF handbook which is free on their website, there is a great diagram which explains all of this.

The good news is that the treatments are often the same regardless of whether you have POTS/NCS/OH. (Unless you have a really rare form of dysautonomia like Shy-Drager.)

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I have the same problem b/c although I have some sx that fit dysautonomia my TTT shows only a mild POTS....

Right now my Dr's are exploring possible Mast Cell disorder along with some adrenal disorders.

I have Lyme disease and it has done a real number on my system.

Although I have had workups for adrenals before my new GP does not think I got the proper testing and attention...

But I do know its a tough one to sort out...

Good luck and I hope you get some answers.

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i definitely understand your frustration at wanting to know which type in particular. and while it doesn't hurt to find out as much as you can, like others have said the actual name itself isn't likely to change treatment. it's more what your body does (or doesn't do), how, when, etc that will help direct treatment routes & hopefully get you feeling as good as possible.

personally my diagnosis is up for debate. i have seen several autonomic specialists & they cannot come to a consensus. they all agree that i have dysautonomia & definite autonomic neuropathy. they all have copies of the same test results & know my symptoms. yet they don't agree. they all have papers published on autonomic disorders and are respected in the field; they all have helped me in some way at some time. yet there isn't a consensus as to whether i have OI/POTS & NCS or PAF. while i'd like to have a definite name (helps for paperwork :D ) ultimately it has NO affect on my treatment so i realize it really doesn't matter much. in all reality i don't fit either category perfectly. and while my two current docs disagree on the terminology, they work together in terms of my treatment/care.

so...based on this & what i've been told (& have read) over the years, the categories are an imperfect science. most of the docs will acknowledge this. with the exception of MSA/Shy-Drager the diagnoses & criteria are not always clear, have changed some over time, & are likely to continue to do so.

i realize that i'm not giving you a clear "answer" per se but rather my thoughts/experience as well as that of some of the autonomic docs....

hope it helps a bit,

B) melissa

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Just for your interest, the Baker Institute in Melbourne is soon to publish a study that demonstrates that the POTS patients tested have poor reuptake of norepinephrine caused by hypermethylation of the NE Transporter gene - which would result in the symptoms of POTS. The majority of POTS patients have no other testable disorder or cause for their POTS.

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