Monday, 2 July 2012


Hi all

I think it is about time that I updated this blog........geez it's been a long time.

A slight update on me and how things have been going.

In February last year, I visited the most wonderful Specialist in the field of EDS.  He is based in London and despite being retired, he still persues his love of his job and carries on his work to help people with this condition (what a superstar he is!).

I was with him for nearly two hours and he was unbelievably thorough. He confirmed that I have EDSH - it was a choice between this and classic but he said that I did not have enough atrophic scarring. I have Marfan Habitus - long arm span, arachnodactyly (long spidery fingers), hand and wrist sign (check out this link ).

He said I have signs of autonomic dysfunction and I am awaiting a tilt table test. This causes me to get tachycardia upon standing, blood pooling in my legs (due to the collagen defects of my vessels) and feeling faint or fainting. The longer I stand the dizzier I get and the faster my heart gets. When I done my first blog, my heart rate would rise to around 120 when I stood up and would remain at that, but now my heart rate can get faster and faster, maybe even up to the 170's, until I sit down which will of course then return to normal. It also has an effect on my blood pressure which can be extremely labile. Some weeks it can be very high, some days it drops ridiculously low. I also get very narrow pulse pressures. I have also been getting hearing problems: pulsatile tinnitus, stapedial myoclonus, but whether these are related to the autonomic dysfunction is anyone's guess until I am thoroughly tested.

I have been getting orthostatic headaches - when I stand up, I am in agony with the head pain - luckily it subsides most of the time within 30 seconds to a minute. Last year, I HAD to lay down as this head pain would not go away if I was standing. Luckily this only lasted approximately 3 weeks. It is now intermittent.

Roll on the tilt table test, that's all I can say about the above issues!

As for my EDS pain, right now, I am pretty lucky. I am only having problems with my hands/wrists and left hip. The SI joint seems rather stable right now but the other day, I decided to be 'clever' and get myself a step machine (I need to work on those soft non existent calf muscles of mine!) but that has now had an impact on my knees once again and they are feeling rather fragile and unstable.

My son has also had a DX of EDSH - he also has a mitral valve prolapse along with this - luckily not too much regurgitation is happening so he only has to have yearly checks to keep an eye on it.

To people who are struggling with their docs, try to persevere or ask for a second opinion.

I'm off now until next time.....


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