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Newbie!


seb10
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Hi everyone!

I just joined (hence the "Newbie" title). I've been dealing with chronic fatigue for over two years now and we're just now finally getting an idea of what is going on.

I actually discovered information on POTS about 4 months ago and brought some info on it to my doctor who (pretty quickly) wrote off my idea -- and not for very substantial reasons. Buuut, I trusted him, thinking that were other tests that would show what was up, but I was wrong. SO, I've revisited POTS again, and am now taking it to different doctors to see if they'd be more inclined to listen.

It will be a relief to me to be 'officially' diagnosed because it is then that I feel I will FINALLY be able to move forward and attack everything I'm dealing with. Hopefully then I'll get energy back and begin leading a normal-ish life.

Everyone on this forum sounds very nice and helpful and I'm really happy to have found it!

Be well!

seb10

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Hello Seb10,

your story sounds somewhat like my story. I also found this site a few month ago, contacted a doctor listed on dinets-doctors-list and finally (after 10 years of bad suffering) got diagnosed! To me, it was a great relief to have a diagnose after all, because then you know what you are dealing with and can adjust more. I am sure you will find a specialist in your area, just have a look at the above mentioned dr. list. Don't give up and hang in there!

I wish you all the best!

carinara

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Hi,

I can also relate to where you are right now. I've just finally been diagnosed after many months of looking for answers. I know when I began talking to my doctor about this, he seemed resistant, because he had not heard of it before. It was not that I was asking for someone to diagnose me with pots, I would have been just as happy if it had been ruled out. I just wanted it to be considered seriously, and I wanted to be tested with a tilt table test. After a year of persistance, and seeing a number of specialists who dismissed me, I finally requested to be referred to an autonomic nervous system specialist. My GP agreed and sent me and WHAT DO YOU KNOW! I HAVE POTS!!!

I did one thing one day that made my doctor take me more seriously. He was always checking my heart rate in the office sitting and standing (immediately), which of course showed nothing. I told him that this usually happened after standing for a few minutes (of course no doctor has a few minutes to wait for a patient to become tachycardic, or drop their BP, or faint!). So the next time I visited the office his receptionist showed me into the exam room. I did not sit down. I stood for 6 minutes until he arrived. By this time I was shaking, short of breath, my heart rate was 156 and my legs were bluish-red up to above my knees (yes, I rolled up my pant legs to show him). He quickly took my arm and put me in the chair. Since that day he has been very supportive and has really helped me to get to the right people for testing and proper diagnosis.

It truely is a relief to get a diagnosis and validation of all youv'e been through. It can be very difficuly to be persistant in the face of doctors who are supposed to know what they are doing (and can be very arrogant about it). But you know your body best. If you truely believe you may have pots, continue to push for testing. Even if testing rules it out, you are closer to finding out what is really happening to you. All the best to you.

Summer

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Thanks everyone! I really appreciate it!

Yes, I had a TTT done and I my blood pressure dropped dramatically and my heart-rate spiked and, after about 30 mins, I passed out. Though, for about 25 minutes of the test I felt like complete poo, shortness of breath, dizziness, etc.

Fun fun! ;P

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