Long Time No Post But Needing A Bit Of Advice

[BendyScooby]

Howdy folks

sorry it's been like ages since I popped in and now I'm back I want somhing. It's just that two years ago (just to refresh everyone's menroy) I had a tilt table test and 24 hour blood pressure monitor test for suspected dysautomnia as my rheumy thought I was a walking advert for it but tests came back negative. Even though I fanited on the tilt which I thought was an automtic positive result. I also couldn't actually wear teh BP mnitor as my veins were swollen. My Rheumy was astounded by the results and so was I. Since then nothing's been done about it and I've declined rapidly to the point where I'm almost house bound. I also have Ehlers Danlos Syndrome and mental health probelms which doesn't help. My main POTS like probs are fainting/lightheadnss, dizzyness, anxiety, palpitations, excessive thirst, excessive sweating, foggy head and weight loss. I've been tested for other stuff and all the tests came back normal. My GP agrees I need specialist care and I'm due to see my rhuemy on Wednesday so I would appreciate pointers or advice before I go to ensure I get referred again to the correct people and this time get a diagnosis in order to get the treatment and care I need. I can't go on like this I'm 32 and feel like an old lady.

THANKS!!!!

[Ernie]

Hi,

Here are a few links:

Detection of POTS and other autonomic dysfuctions

http://www.dinet.org/how_is_pots_detected.htm

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

[Megan]

Maybe you could ask for another TTT and suggest revisiting the idea that POTS could be the problem? Also, do you know why your test result was negative? Because (I think) your heart rate has to go up 30 beats per minute for a pots diagnosis. Mine only went up 27, but due to my other symptoms, I was given a POTS diagnosis. It might be interesting to see how close your test was to giving you a diagnosis. Just a thought.

Meg

[BendyScooby]

Maybe you could ask for another TTT and suggest revisiting the idea that POTS could be the problem? Also, do you know why your test result was negative? Because (I think) your heart rate has to go up 30 beats per minute for a pots diagnosis. Mine only went up 27, but due to my other symptoms, I was given a POTS diagnosis. It might be interesting to see how close your test was to giving you a diagnosis. Just a thought.

Meg

I don't know I guess I'll ask. I know I've got it, I've researched into it for a couple of years now but I've never had a definite diagnosis. One of my rheumys rekoned I probably did have it even though it didn't show up in the tests but I need the official stamp so I can get the care I need. Seeing a new rheumy Thusday now, old one has left...great. So getting nervous. If anyone has any experience of challenging a diagnosis input would be much appreciated. I hav to go a long way to see him and spend a lot of money so I need to make the most of it. Can I ask what your other symptoms were Meg and did they show up on testing? x

[Megan]

Well, a big symptom was the fact that I was passing out a few times a week. A lot of it was things the doctors observed, like my feet turning gray when I stood for a period of time, my blood pressure dropping when I stood (which showed on my ttt). Also, being hyperflexible helped convince the dr's that it's what I had, since I guess it's a sign you're more prone to having it. I went to Mayo Clinic for something entirely different and ended up being diagnosed, so I guess to a doctor who knows what he's talking about it was pretty obvious that my symptoms matched POTS. It might help to take some information from the internet with you to your appointment, especially if you can find stuff written by specialists. Another thought, did you have a sweat test? I'm not exactly sure how it works, but I had one when I had my TTT and it showed that I didn't sweat properly in some places, which helps with the diagnosis. I hope you can make sense out of this. I'm feeling kind of brain-foggy!

Meg

[BendyScooby]

Well, a big symptom was the fact that I was passing out a few times a week. A lot of it was things the doctors observed, like my feet turning gray when I stood for a period of time, my blood pressure dropping when I stood (which showed on my ttt). Also, being hyperflexible helped convince the dr's that it's what I had, since I guess it's a sign you're more prone to having it. I went to Mayo Clinic for something entirely different and ended up being diagnosed, so I guess to a doctor who knows what he's talking about it was pretty obvious that my symptoms matched POTS. It might help to take some information from the internet with you to your appointment, especially if you can find stuff written by specialists. Another thought, did you have a sweat test? I'm not exactly sure how it works, but I had one when I had my TTT and it showed that I didn't sweat properly in some places, which helps with the diagnosis. I hope you can make sense out of this. I'm feeling kind of brain-foggy!

Meg

Thanks...well I'm off to see doc tmr now not today as my appt was changed. So tired UGH. Know what you mean about foggy. Sometimes I think I'd be quite happy to jus stare out of the window all day. Might see if I can print something off. Will let you know how it goes. Haven't had a sweat test. aybe I'll suggest it. I sweat like **** actually.