How "serious" Is Pots? Tilt Table Confirm Diagnosis?

[Guest luvmorganhorses]

Hi,

Just found this great forum. In the past 8 months I've seen an endo,

cardio, and a neuro doctor. After months thinking I had Addisons Disease,

the ACTH stim test ruled that out. I was convinced the test was wrong when

my endo put me on Florinef and felt much better. But it was onto the next

victim, the neuro! She gave it her best shot with MRI's, blood tests, ANS

tests. She came up with idiopathic autonomic neuropathy. Then, off to the

cardio for the chest pain symptoms. After the full battery of tests-holter,

stress test(which i passed with honors,thank you) echo, EKG-turned up only

a mild mitral valve prolapse. Although when I called for the holter results, the

nurse told me there are times when your heart speeds way up and slows way

down. The cardio said,"Yeah, but it was all within normal range."

So, my next feat is a tilt table test scheduled for Sept 6th. I've already a pseudo TTT by

my endo which I passed out within the first two minutes. So far, no doctor

has actually mentioned POTS. My cardio who ordered the test said,"We'll

see how the TTT goes and put you back on the florinef(which I been off for

weeks and feeling miserable again)and start beta blockers.

At least he knows what will help. I am going to ask him to refer me to a

neuro I found on the DINET list who is close by.

Sorry for all the rambling, my question is does the TTT along with all the

symptoms give a definite diagnosis? I've got to know for sure, so I know I'm

not crazy. Also, how they know what kind of neuropathy you have? In other

words, how do you know it isn't going to get worse or MSA or

degenerative? When they thought I had Addisons Disease I knew you could

go into crisis and be fatal and you had to carry meds with you in case.

POTS, isn't potentially fatal, is it? Do most doctors treat it like it is no big

deal, just take your meds and you'll be fine? Just tired of not being taken

seriously, I guess.

Thanks for all your advice in advance and for this forum!

[Poohbear]

Welcome!!

First off, you are not crazy. Although I understand it's easy to FEEL that way sometimes.

It sounds like you are on the right track though and at least know the Florinef helps you. Be sure to have your potassium checked regularly if you take florinef because your body will retain sodium and deplete potassium so for some people they need prescription potassium supplements.

As for the TTT it does not give a definitive diagnosis. It is a useful tool to be used in conjunction with other testing and symptoms. There is a high percentage of false positives and false negatives with the tilt and many Dr's don't know how to properly read the results.

It's a useful tool and worth having done in my opinion.

Check out the main pages on this site.

You may want to go to www.ndrf.org and go to the Patient Handbook and read up (there is a pdf format for free online)--there is lots of good info there and will explain the various tests and meds used.

MSA is statistically not likely so try not to worry too much about that.

Neuropathy is diagnosed in different ways depending on which nerves are being tested and it's a complicated process to have good testing of autonomic nerves (because most Dr's don't know how to do the testing and most do not have the equipment to test autonomic nerve response)

Good luck with your search for answers!

[Lulu]

welcome to the forum! i do hope you find the answers you need from your doctors. it is frustrating to not know what is going on with your body, i can relate to that feeling; even though i've had this for awhile, i still learn something new about it most days.

POTS is not fatal, though it certainly changes your quality of life, and even with the same dx, i think ppl can and do experience POTS & its symptoms differently, though there is often a lot in common.

in my experience, most doctors i've encountered don't even know what dysautonomia or any of its forms is; as a patient with typical doctors i've found i've had to educate them. and some are none to pleased with my knowing a bit more about my body than they do. in contrast, my GP and Dr Grubb's office have been outstanding. i am fortunate. you can read near-infinite frustrating encounters on this forum with physicians and medical folks who are not. i wish it was less common for all of us here. and i wish you understanding, competent medical care.

i'm sorry i can't answer your other questions with any degree of certainty. there are others here who are very well informed about such things, i will leave it to them.

i do hope you don't have POTS. i wouldn't wish this on anyone.

good luck to you!

[MightyMouse]

if you're on florinef within a month of taking the TTT, it may alter the outcome of the test -- typically, meds are to be stopped prior to the test, and with florinef, it takes several weeks to clear your system.