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Tests On Drugs Give Negative Results?


E246
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How do you get over persuading doctors about your symptoms when pots is so erratic and a test on a good day means no one believes you any more.

I had to ring the complaints dept in order to get anyone to see or prescribe for me before Christmas as had become so ill and no one seemed to understand. Then all the tests are negative as they do them after putting me on medication.

Had waited ages for a HR monitor to catch the surges that have blighted my life and then was put on Fludrocortisone 4 days before monitor(from a different dept) and so there were no surges to see.Complicated by fact i said my personal hr monitor was showing spikes and their monitor didn't and that is in my notes now plus no surges, so now i just look neurotic. The notes in my file do not mention that the spikes caused no symptoms or that i was on fludrocortisone.

Also given 24 hour Urine collection for when I feel surges and again on florinef have not had any - which is brilliant. I have had 2 of these tests before when i was not symptomatic which were negative.

It is as if my notes are full of negative tests results and so no one believe me. I am so frustrated with the medical profession. Despite having a definite diagnosis of POTS I was even told that that 5 of my 6 tilt tests were negative - but no mention that i was on medication for all the other tests or1 before i was diagnosed and was not symptomatic at the time. Is controlled POTs still pots?

Started to wonder if the pots is due to an kidney/adrenal problem as the florinef had such a dramatic effect on me within an hour. It didn't cure the pots - still found walking far difficult and chest pain but stopped the surges and the dreadful ill feeling.

Does anyone else have erratic symptoms and problems getting tested at the right time?

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for more accurate results you are supposed to stop taking all of your medications for your pots symptoms for a week prior to your tests. i had one tilt that showed irratic bp and hr while on my beta blockers and they said at that time i just had ncs. then when the mayo did my second tilt it came back as pots. so i do think that medications can alter your readings. my symptoms can come and go regaurdless of medication some times but at this point mine are ever present.... do you see an autonomic doc? hope you find some relief fighting for answers is all you can do. you have to be your own best advocate!

kim

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Hi Kim - absolutely love your picture. Going to have to show it to my daughter who is cat mad and breeds them.

Anyway - yes thanks for the advise. I often do not know when they will give me a tilt test and there was no way i would stop the florinef for it as it has been a wonder drug for me.

When i got the monitor i decided to delay taking a tablet just for one day so that we could record the surges as no-one seems to believe me without the concrete evidence. By 4.00pm i was in new adrenaline storm and started to feel really bad so decided to retake the tablet and of course no one had said only to take them in the morning - they were prescribed over the phone after my complaint - and i was so ill. So the monitor recordings show very little - I was on medication.

Just a bit of a rant - am just so frustrated with the intractability of the medical profession. Do they really have so many people who make up their symptoms and are they qualified to make psychological judgements about patients.

I felt before christmas that I was left to suffer in the most inhumane way. I was being made to wait like a naughty child who was making too much fuss and they are cross with me because while i was in London and collapsed I tried to get a private appointment with another consultant - I was at the beginning of a 3 week holiday - the first i had had for ages and did not want to go abroad ill - fair enough?

Thanks for listening.

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