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Initial appointment with London

April 20, 2011

The hottest day of the year so far and I was sat on a train into London for my hospital appointment, trying both not to pass out and control the overwhelming nausea (heat worsens my symptoms tenfold as it dilutes the blood that my body already struggles to control) and the bloke in front of me eating the beef pie really didn’t help the issue!

An hour and 30mins later I was off the train, but the baking heat on the streets of London was just unbearable, so we headed straight for the hospital – I set my sights on an old lady in front of me who was struggling to pull a suitcase on wheels with one hand, whilst trying her best to stay upright with the aid of her walking stick in the other – I couldn’t even keep up with her!

We reached the hospital in plenty of time and although an hour early, got to go in after only 10mins of waiting. Fortunately I got to see Prof. Mathias himself – He couldn’t have been a nicer person, seemed to have all the time in the world for me and better still had a good sense of humour.

I had put together an A4 page which listed all of my symptoms, but I never needed to get it out. Instead he simply asked me loads of questions and before I knew it he had written down all of my symptoms without me actually telling him them! He took my pulse whilst standing and said that 117bpm was incredibly high for a young man of my age and certainly a young man of my age who is on beta blockers!

He said that I definitely have an autonomic disorder, one of which is certainly POTS (postural orthostatic tachycardia syndrome) but then he said that I also most certainly have benign Type III EDS (Ehlers-Danlos Syndrome) as well.

In regards to my bowel problems, he wants to send me to a gastro specialist. I said that I had already had cameras up and down etc and they didn’t find anything, but he said this was different as he wants to send me to a gastro neurologist, to look at the nerve endings in the stomach. He said this gastro neurologist (who is apparently also a professor) was top of his field and one of the best, and although he works at a different London hospital he would very much like him to take a look at me.

The next step from here is for me to go in for 2 to 3 days and they will extensively test my bodies autonomic system, unfortunately the waiting list for this is several months, but once they have done the tests then we will have an official diagnosis and can begin looking at medication.

In the meantime I should continue with the beta blockers, drink plenty, and eat loads of salt (which apparently thickens the blood) no alcohol, have as little caffeine as possible, and also use a stress ball for 30 secs if I’m about to pass out as it will raise my blood pressure.

Sadly neither POTS or EDS are curable, but he assured me he will do everything he possibly can to help me manage them and get some form of normality back.

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