What Tests Should I Do Prior To Mayo Appointment?

[avidita]

Hi again

B/c my health has taken a very bad turn, so I am being shipped to Europe to do testing (and possibly go on anti-depressants) while awaiting an appointment in Mayo in March. There is a doctor in Mayo that specializes in my type of symptoms (the constant relentless dizziness type) and he has agreed to see me and have other people take a look at me, too. I will use my time in Europe to do as many diagnostic tests as possible (b/c they are cheaper there), so the Drs in Mayo will have an easier time with my Dx. My question is this, what would you suggest I get tested and what tests should I do? (I am making a list: Lymes, holter monitor, Lupus, etc.) Below is a list of some of my most common and/or recent symptoms in case they give some ideas. I haven't had any POTS related tests other than the TTT, so maybe those with more experience will have ideas (like how do you test low flow POTS or your norepinephrine levels... anything relevant really)

- constant dizziness - especially when sitting or lying on back (had ENT workup already)

- arrhythmia upon lying down (esp. when lying on left side)

- akathisia - I came across recently and it perfectly describes how I feel most of the time

- nausea (sometimes)

- tremors (I don't know if this is anxiety related or not)

- strange sensations as if zooming in and out when trying to fall asleep

- feeling of floating when lying down

Thanks in advance!

M.

[prettyinpink]

I'm not sure about the tests but, I curious. Why are they sending you to europe? If your health is so bad how can they send you out of the country on a really long plane ride? What/Who is in europe to help you?

[avidita]

I'm not sure about the tests but, I curious. Why are they sending you to europe? If your health is so bad how can they send you out of the country on a really long plane ride? What/Who is in europe to help you?

My family is sending me. I don't really have any problems with long flights, just pop some Xanax and/or motion sickness drug and I'm peachy. Even back in Feb, when I was arguably worse than now, I handled the flight just fine. The reason I am going, is b/c US doctors require A LOT of wait time before appointments, do not spend time with you and are very expensive for someone without insurance. I have many specialists there on my fingertips (albeit no good POTS ones - small country/rare condition kind of thing). At the very list the blood work I need to have done costs $1600 in the US and about $150 in my country. That alone is worth the trip. Strange thing in my case is that I am diagnosed with POTS, but the symptoms I'm experiencing (constant dizziness, nausea, tremors, etc.) don't really have much to do with my standing up or working out or doing anything that would make a POTS patient worse. Like today, I was horrible in the morning, very dizzy sitting/lying down. So I drank an anti-anxiety tea and drove to the mall and shopped/stood in line, the works and felt BETTER than when sitting/lying at home. Not good, but much better.

[potsgirl]

M,

I hate to say this, but usually the doctors at Mayo will want to do their OWN tests anyway, and they won't take yours to heart. I've had that happen numerous times. I just had an echocardiogram a couple months ago, but when I see my cardio in the beginning of December, they'll do all the tests over anyway. They really only trust their people and their testing. I would definitely call and ask your Mayo doc or his assistant is this will be the case. There's no use having a bunch of tests done only to have them re-done...

Best,

Jana