HOw many people had autonomic Testing Done?

[DSM3KIDZ]

I am really confused by this dx. I did a search on it and the only thing that came up was my old post. How many of you had Autonomic testing? TTT which almost everyone had, sweat test, blowing test (forgot name) or any other autonomic testing. The reason I ask is I'm obviously having anxiety tonight and was reading all the causes of POTS and since I got POTS, Autonomic Neuropathy, and Gastroparesis am I on my way to PAF or someother horrible outcome? (All my symptoms came pretty much overnight) I know you guys are not doctors but it seems like all my systems are not working correctly (most noticable is the stomach).

Since they don't have testing for most of those outcomes of PAF or MSA how do you know?

I failed all my Autonomic Testing and I'm just thinking about my future for me and my kids and I'm getting alittle scared. I know you can't die from POTS but it's the unknown that scares me.

Have you ever had anxiety over any of this when you guys were first dx. Are you gals worried about any of this or am I the only one and just have to much anxiety?

Any imput might help clear my mind from the worst. IF I only had a magic ball.

Thanks Again

Dayna

[morgan617]

Dayna, we've all had anxiety about all the things going on in our bodies. Fear of the unknown blows. But I think a lot of the symptoms overlap and you can get several different diagnoses'. I see a little of me in just about every one. I think we all dwell on our futures and go through the same emotional roller coasters. Remember, emotions are affected by this disorder. So, no you are definitely not the only one, Even though your tests have shown Oi, it doesn't mean you have dire straights ahead of you. Rough times, yes, but as we all know, we will live to be 105, just so we can be miserable forever! That's why these forums are sorely needed. For times like this when you think everything is going to be bad and you need to just vent about your fears and concerns. We have all done it, and will continue to do so. I just look at it as one day at a time. I can only do what i can do. I have my priorities. Save your energy for the things that do matter. Read to your kids if you can't play with them. Rest when they do. I f nothing else, this illness teaches children it's okay to be different and compassion. I know it's easy to say, don't dwell on things, but remeber, i am here in the same hole, so I do know of what I speak. Give yourself a hug and I'm sending one your way. Your as normal as the rest of us.....morgan

[Poohbear]

Dayna,

It is normal to have the anxiety and fears especially when you feel like you are fighting so much to get well and be healthy. I've read and been told that few cases turn into PAF but I also know there is a LOT that the Dr's and researchers don't know yet.

I have had all of the tests you've described and some I had positive results to and some negative.

I heard Dr. Phil say several years ago something that really helped me out a lot... he said, "If you are going to play the "what if" game then play it all the way through". What he meant is that a lot of people say, What if ______ happens? or " "What if I ___________ etc etc. Dr. Phil says a lot of people stop at that point and he urges you to carry it through and make a plan for your "What if" and answer the questions.

It's not that by answering all your "What if" questions you will have magic answers but you will feel better about coming up with a plan and hopefully that will lessen the fear and anxiety. It may be that the answer to "What if I have PAF?" will be "then I will allow myself to grieve my losses and then I will do what I can to enjoy everyone around me as much as possible, to get support from family and friends and I'll fight my best every day to live the best way I can and forgive myself on the days I disappoint myself."

I hope you understand what I'm trying to say. I know this is no magic answer but I hope it helps in some way.

Hugs to you and I hope you get the answers you are seeking!

[DawnA]

DId you have your testing done at Froedert? My daughter and I were both tested there and diagnosed with autonomic neuropathy. I think they use this diagnosis when you fail the sweat test. I still consisder myself to have POTS and orthostatic hypotension diagnosed by my cardiologist after testing.

At Froedert, I was told I had small fiber neuropathy and sent home on a beta-blocker, which did not help. I could not find any information on the internet and was soo confused. THen I ordered my test results, saw orthostatic tachycardia and found this web site. I used the information on here and was able to get better treatment elsewhere. I think autonomic neuropathy is an umbrella diagnosis.

Dawn A

[Sunfish]

Hi Dayna-

I fit a lot of your profile & have had pretty much all the testing out there between my regular docs & just getting back from studies at Vanderbilt. I'll write more when I post regarding my Vanderbilt trip, but I too have Autonomic Neuropathy & OI/POTS and "then some"...neurogenic bladder, gastroparesis, etc....lots of things that tend to "fit" with other diagnosis. THe categories are imperfect however, so try not to worry too much. And look for my Vanderbilt post in the next few days as I'll write more about my discussion with the docs there re: diagnosis, prognosis, etc.

Hang in there!

:-)melissa