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Flop's Trip To London


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Hi, sorry this update is so overdue - things have been hectic at work recently and I haven't had the time I would have liked for keeping up with e-mails and writing new posts.

As many of you may know I had been eagerly awaiting an appointment at St Mary's hopsital in London to see Professor Mathias. My cardiologist back home is lovely and guessed I had POTS and confirmed it with a tilt test. He has prescribed several different medications for me and has made a huge difference to my level of daily function. However we have had disagreements over some treatments: how much water to drink, how long to take salt tablets for, compression stockings and then the main one was over whether or not using a wheelchair would make my orthostatic intolerance worse in the long-run.

Anyway, he admitted that other patient's with POTS had been completely sorted with only some of the medications that I am taking and he didn't really know what else to do with me.

A few weeks ago I made the trip down to London with my family. I had an appointment with Prof Mathias and was delighted that I got to see him himself rather than one of his team.

I always get really nervous before doctor's appointments and end up really tachy, hypertensive and dashing to the bathroom a lot! This time was no different, I don't know why doctor's waiting rooms make me feel so bad?

Prof Mathias was lovely, he was really welcoming and tried hard to put me at ease and just "chat" (about my Dad's work and international travel) before really starting to ask the questions about my health. Rather than just listening to me ramble on about my symptoms he had a very focused way of asking specific questions but also giving me the chance to talk about almost everything that I had planned on telling him anyway. It was quite surreal the way that he covered all of my symptoms and seemed to link them to POTS.

From me telling him about my tests at the local hospital he agreed that POTS did seem to be the most likely diagnosis but he wants to do his own tests before formally diagnosing me himself (my cardiologist says I have "probable POTS"). The plan is for me to get admitted to the National Hospital for Neurology and Neurosurgery in London and go through a series of tests looking at the autonomic nervous system. He didn't say exactly what tests I would have but from chatting to other people that have had the testing I have a fair idea of the sorts of things to expect.

One of the interesting pick-ups was the possibility of Ehlers-Danlos Syndrome or Benign Joint Hypermobility Syndrome. He thinks that a lot of my history fits with EDS but he wants me to see Prof Grahame whilst I'm in Queen's Square to look into things in more detail. I know that they are doing some research on the link between POTS and EDS/hypermobility so it would be great to see if I fit into that group and what their research comes up with in the future.

Prof Mathias did manage to answer some of my questions and advised that I continue to take salt, water, wear compression stockings and use my wheelchair at work if it helps me. At least he seemed to feel that the wheelchair wouldn't do me any permanent harm. This was something that I was really worried about after talking with my cardiologist. I know that I wouldn't be well enough to work without the wheelchair but would have a hard time coming to terms with having to "retire due to ill health" at the age of only 27!

We managed to meet up with some of my relatives on the way down to London and see my Godmother whilst we were in London. So all around it was a really positive journey. I have no idea how long I will have to wait to have the tests done (the list is several months long) but I am feeling really positive.

Here's to future investigations and hopefully some answers and treatments!

Flop

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That's great, Flop! I'm glad you had a good appointment! And it's always a good sign if your update is late because you're so busy at work!

I get nervous before appointments, too. I HATE seeing doctors, though visiting the nice ones isn't as bad!

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Thanks for the support.

I think that it is too easy to post after bad doctor's experiences (as I know I have in the past) but not take the time to share the good experiences. Just wanted to share my positive experience and let other members know that there is hope out there.

Take care,

Flop

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Flop,

That's great news!! Please keep us up to date as to how things go.

:) Lisa

p.s. I often get nervous before dr's appointments....even the good ones.

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I'm glad Professor Mathias was good to you, and gave you some validation. He sounds like he covers all bases, and doesn't make you feel dismissed or crazy.

It's good to know that some doctors are actually out there to do their jobs, and have a true passion for treating patients equally, and with compassion.

Good luck with all your testing. :)

Maxine :0)

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Thank you doctorguest, your earlier advice fitted exactly with what Prof Mathias said. Now I don't feel so badly for ignoring my cardiologist and going with your advice (at least it will end up in my notes in the letter from Prof Mathias. My cardiologist is really worried that if I drink more than 1.5 litres per day that I'll get nephrogenic diabetes insipidus)!

Flop

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I used to drink up to 4 litres of water a day during a crash, and I'm still here. And not diabetic!

Glad Mathias validated you. Did he make clear that his focus is diagnosis and research rather than treatment? I think he is conducting some studies on EPO at the moment, though, so you might be able to try that. It's really changed things for me <_< It's usually about a 6 month wait for the autonomic testing. It's just variations on the tilt theme- one fasting, one not, an exercise tolerance test, yada yada!

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flop,

i am very glad things went well for you!! and i still think it was a pity that we weren't able to meet as i was so close by (on saturday while travelling home). i hope that the testing will work out well for you.

take care,

corina :)

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