I have a diagnosis

Hi,

Again I haven’t been on in a while. I haven’t been doing very well and I have to balance what I do with rest periods. Unfortunately that means that I can’t always post on my blog or there isn’t much to tell you as I have been stuck in bed a lot of the time.

Yesterday I had to attend the local hospital for a tilt table test. Its a very basic hospital table that you are strapped to and they raise to a 60 degree angle and whilst you are standing they monitor your heart rate and blood pressure to see what its doing.

I will be honest it wasn’t very pleasant around half way through I started retching, trying to be sick. My heart felt like it would beat its way out of my chest and I felt like I was going to pass out. I don’t know what my base heart rate was, I tried to remain calm but I know it would have been in the 90’s before starting the test.

Listening to the Dr who performed the test discussing it with his student Suzie, I heard my pulse had rocketed to 150 beats a minute, it has also hovered around 130/140 beats per minute.

When they put me back into a lying down position my heart rate dropped back to normal very quickly. It was so impressive the Dr even commented “that’s one of the most dramatic things I have seen. Its POTS isn’t it!” My heart soared I finally had a diagnosis for some of my symptoms. I didn’t say anything as I didn’t want to ruin the moment and I was still trying very hard not to vomit everywhere.

The Dr then turned to me and said “well young lady you have POTS” I replied “yes I know, Ive been trying to convince my GP about that for a year, unfortunately he doesn’t believe the condition exists. Oh well its only taken 4 years to be taken seriously.” I was absolutely consumed with anger – which I thought was really strange. But then I thought about it, I was angry at having to jump through all these hoops to finally prove that there is something wrong with me and its not all in my head. I was angry that despite providing my GP with medical journals and books written by people such as Blair Grubbs – The fainting phenomenon, I had still been dismissed. I had even done whats known as a poor mans tilt table test at home, where you measure your pulse on standing then at 3, 5, 7,10 Min’s etc and gave this to my GP. Only to be told there is nothing wrong with me and its normal for your pulse to go up to 150 beats per minute on standing. Well it clearly isn’t and the condition would explain why I feel so bloody lousy all the time.

Once I got home I felt a bit better, you could tell how angry I was as I didn’t ring my mum straight away I needed to calm down. My mum, dad, sister, husband and friends have been my supporters. I also have friends I have made on the Internet through various forums and they have never met me but believed that I was ill and it wasn’t in my head. Without those people cheering me on telling me I was ill and I wasn’t doing it for attention I would have given up long ago.

I know that this is just another battle, I haven’t won the war. I need to have the EDS/ hyper mobility recognised and diagnosed along with the gastroparesis. Many Dr’s like my “wonderful” GP still don’t recognise the condition. There will be other battles but after 4 years ( my being ill anniversary is 11th January 2007) of being given diagnosis’s and then having them taken away or being accused of attention seeking, there is something there that I can’t fake and have no control over heart rate and blood pressure!

Plus we still dont know what is causing my double vision, ptosis and nystagmus…….Occular MG?

I go back to clinic in 3-4 weeks time, so if I don’t post before I will post after that.

Happy new year xxxx

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