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k&ajsmom

Had My Autonaumic Work Up Today..question?

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Hi everyone,

I hope everyone is fairly as well as can be expected.

I had a new qsart, ttt, and valsavalva? Thingy today. Boy has things come a long way since the 80's when i last had one. Lol

Dr.chemalis lab techs are AMAZING. I cannot express how impressed i am. The tech has a daughter with pots and has sadly lost a son to a weak heart. So i can truly say this man is in this with his heart and it shows.

Anyways,

I have one question. My ttt was very very short. He said it could be ten minutes to 45. After 5 he started looking concerned. My feet and legs turned purple (this has never happened before) but other than the gut wrenching stomach pain and breathlessness i was only moderatly dizzy. After 8 minutes he said we are gonna put u down now.

What?

I'm confused. Though i was symptomatic, only mildly commpared to some days and i cant figure out why he stopped. He said he got what he needed and said "i can only say this test has been very beneficial for u" my mom watched my vitals and she said though my hr bounced from 79 to 150 up and down, my bp stayed fairly normal. Although it bounced up and down it didnt plummet like it usually does.

Im just confused, i expected he would need my syncope symptoms to "come out" and see my bp drop to diagnosis me.........?

Every other time ive had a ttt, ive passed out like clockwork at minute 11, mind u that was a long time ago.

On the risk of speculating, does anyone have a similar experience or have any knowledge of why he stopped so early?

Thx, im worried they missed something becuase i didnt hit bottom, so to speak.

~Sarah

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I'm not certain but maybe once he got the results he needed, hr showed pots, he stopped because was trying to keep you from going thru an extended recovery period afterwards. Or maybe he did it so he wouldn't have to keep you if you passed out, etc.

I say that because on my last pmttt, where I tested positive for pots, I had a petite mal and severe sob so being supine wasn't an option. My recovery took hours. I'm not sure how they'd deal with this during a ttt. I was unable to move.

I thought it was odd that he said this was beneficial for you. A cure would've been beneficial. Lol.

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Thx dizzy,

Wow i am so sorry u went through that. Ugh

I am thinking he confirmed pots but i wonder if there was something else he saw. I was already diagnosed pots a year ago but never had a repeat ttt since childhood when diagnosed ncs secondary to auto dysf. When he said ?this test was beneficial for u, he implied, it will be beneficial for ur diagnosis and treatment. Of course he was trying to be vague stating that of course the doctor can only tell u why...lol word play is extremely annoying with this stuff, although i understand his position. I just am not sure, other than pots and similiar diagnosis ie: ncs, oi etc. What else it could have told him??? Irritating, as now i just have to wait and see.

Thx for ur response =)

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I had a TTT test last year locally as part of some follow up tests done locally and had the results sent to the Mayo instead of having to go there again.

My TTT test at the mayo, the table looked like the lethal injection table, my arms were straped down but not at my sides they were horizonally out. My Mayo TTT lasted about 10 minutes each(with about 5 minutes of prep/setup) and I never looked at my hands/arms because because they were out. I was also wearing sneaked and a yoga pants so I didn't see my feet. The room was also very quiet, in fact the staff asked me to not talk too much and relax. On one TTT when my BP dropped to 50/30 they said that was enough and I happily agreed.

When I had my follow up locally, the had me in a hospital gown and spent about 25 minutes trying to get me to look modest. I finally told them to start the test I really didn't care if my bra was showing(I live in Ut & I guess some people are picky). My arms this time hung down at my sides. they had a tv for me to watch and I remember boy meets world was on and I was trying hard to hold on as long as I could. I looked at my hands at 10-12 minutes and my hands were dark reddish. I had never seen hand arms and hands this color. I am very pale normally. My feet were turning blue. Sometimes if I take a too hot shower I get a slight blue color on my feet, this was worse. I tried hard not to look at my arms but by 15 minutes it was almost like a tan line between the reddish lower arm and hands and my upper arms. I last 18 minutes before I was unable to speak and they stopped. Now remembering the color change scares me, I have to try and not think about it, the PA commented about the color change but the dr was only concerned with numbers. I don't know if it was the different way I was straped on the table? or that I it took so long to set the test up so I actually was on the table an extra 25 minutes. I was told no food or drink for 8 hours before so maybe that had something to do with it? I never was so happy to drink powerade and drank 32 oz like a college kid chugging a beer and usually I'm a timid swallower.

I have found some doctors seem to see the quick 80 to 160 HR increase in less then a minute and don't care to see more. They just want to confirm the POTS and that's it. I've only found a handful of medical professionals that really want to learn more and some don't want the liability of waiting till you faint or pushing you to hard. The last time I went to the Er for a high fever and ask to lay down and the dr thought I was being a snob. he didn't know much about POTS when offered to demonstrate since I was hooked up to BP and pulse and when he quickly saw the pulse changes , he said please stop, and I got the quickest service in the ER and he got me right out. He said he was scared to see me stand up and didn't want to see the full show.

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Don't worry, your doctor got your results quicker. My son had 2 TTT and both were positive. Because his symptoms were severe, he was not able to stay up the full 10 minutes either. The doctors were afraid he was going to pass out so they stopped the test.

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My test was very short and they stopped before I passed out b/c they got what they need and the doctor told me I failed with flying colors.

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My TTT was only about 5 minutes, it was all they needed to see that my change in blood pressure and HR confirms POTS. It's good that you didn't have to go through that unpleasantness for long and they got the info they need! I don't think syncope or even pre-syncope is necessary to prove anything on a TTT, but it definitely reinforces the diagnosis.

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Its amazing how every doctor or lab can do it different. Im curious, i know the test confirmed Pots (my gp spied that result) which i already knew i had, but is there anything else they can tell from this test? Like what kind of pots etc...? Just curious..thx everyone for ur encouragement. I was worried it was all for nothing. =)

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I've had Dr Chemali's TTT and qsart. Thats how I have my dx. I'm very lucky that his office is only a few hours away. POTS doctors are hard to come by.

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I know what you mean - you want to collect all possible information. But maybe in his mind it didn't matter what happened past that point, meaning it wouldn't change what other tests he would want to do or how he would treat you? You can always ask him and see what he says.

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