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A diagnosis I’ve been waiting on for a very long time!

August 25, 2011

Following on from the strain of last weeks tests at the NHNN, my body just about returned to my ‘normal state of ill-health’ by Tuesday.

Yesterday I went to my local hospital at Kings Lynn, to see an opthamologist. One of Prof Grahame’s Consultants that I saw back in July, wanted me to see someone locally just to check that the EDS wasn’t causing anything bad within my eyes. I went prepared, expecting to see an opthamologist that wouldn’t know anything about EDS or POTS, but I am pleased to say that I was wrong!

As soon as I walked in she mentioned the EDS diagnosis and I explained the POTS side of things. After checking my eyes, she told me that they are incredibly healthy (apparently only 10% of the UK have eyes as healthy as mine) and then she went on to explain why I experience problems with my eyes.

Apparently the lack of blood to the brain, caused by the POTS, means that the eyes too receive less blood, and that in-turn can impair the vision. This explains the flecks of light and blobs that I sometimes see.

Secondly, when I go from reading something or using a computer and change to look out of the window, my eyes can take a couple of seconds or so to alter their focus. This she said was due to the EDS and the elasticity, which can cause the eyes focus slower.

I left in a great mood, its one thing to have these problems, its another to be told that everything is ok and not to worry, but best of all, is when the consultant actually ‘tells’ you what’s happening.

Today I went to Barts in London to see Prof Aziz. I had to get up at 5.30am and I really cant do mornings anymore, so I was in a pretty bad way by the time we got to london. Fortunately this wore off after sitting in the waiting room by an open window.

Ive had gastro problems since I was 14, and I’m sure family reading this will remember the year I spent in and out of hospital, trying to find an answer to those problems. Of course nothing was ever found and it was labelled as stress/all part of growing up.

Obviously the problem stayed the same and I continued to suffer in silence for the next 10years. Bad nausea and daily loose bowels was difficult to hide, but I couldn’t face going to the doctors and being told that it was just stress. I grew a big phobia towards doctors and felt like a hypercondriac all of which made me deny the stomach problems and nausea even more, and I continued to cover up the problem by keeping it to myself.

July last year when the POTS really took hold, I eventually plucked up the courage to confide in mum, who of course got me to the doctors the next day. Long story short; after seeing Prof Mathias in relation to the POTS back in April, he asked if I had stomach problems and subsequently referred me to Prof Aziz.

I am so overwhelmingly happy and relieved to be writing this – finally today, I received an answer to all those years of unnecessary struggle and discomfort… EDS.

Prof Aziz explained that its to do with defect of the collagen in the connective tissue, causing the stretchiness (hyper-mobility) in the veins, skin, joints etc. He went on to explain that parts of the stomach also contain a lot of connective tissue.

When I eat, the food passes down and goes to the pipes in the stomach (I say pipes as I clearly didn’t pay enough attention in Biology, but its something to do with the intestines, colon etc). A ‘normal’ person’s intestine, has a wall which is tight enough to squeeze the food along from A to B obviously digesting it etc on the way.

But with me the EDS causes the walls of the intestine etc to become stretchy. The walls stretch allowing more food to build up, and because they are stretchy, the squeezing motion isn’t as forceful and the food moves from A to B much slower than normal.

This means that bacteria grows on the food, causing the discomfort I suffer with and subsequently causes the diarrhea. (sorry to be graphic) but because the food hasn’t had time to digest properly, the undigested food also passes with the diarrhea and Im guessing its the reason I am underweight as my body doesn’t have enough time to get the goodness it needs from the food.

Similarly when I eat, the food reaches the buildup in the stomach and causes the reflux, which along with the bacteria comes back to the throat, and therefore causing the immense nausea that I suffer with all the time (sorry this is so disgusting – but to me its quite fascinating!)

Right, I promise that’s the horrible bit done with! Now with the solution.

Prof Aziz will write to my GP and get him to prescribe me with a tablet, which I will take 3 times a day (half hour, before I eat) this will help tighten the stretchiness and subsequently help speed up the transit and digestion of food.

Secondly, I will be given a course of antibiotics to clear up all of the bacteria which has built up in my stomach. Once that has gone, he wants to prescribe me with a probiotic – this will build up lots of ‘good’ bacteria in the stomach, which will also help to speed up with the digestion etc. Hopefully my GP will agree to prescribe it as ‘technically’ its a form of health supplement, albeit an expensive one. But if not then it is available over the counter.

He seemed pretty hopeful that once I start, things should clear up quite quickly. Its taken years to get here, but today was a bloody GOOD day! He has also suggested phoning me for my next consultation, to save traveling to London – BONUS!

  1. Adriana Marks permalink

    Hi Liam,
    I am sorry you have had to go through such hell but thank God the doctors realise how serious your situation is. I believe Daniel gave you contact details of my friend whose entire family has gone through a hell of their own. In their case, ED is more severe than the PoTS. They are lovely people. I am sure you are already in contact with people who understand what you are going through but if you still want to chat, don’t hesitate to contact them.

    All the best and may this be the beginning of better quality of life 🙂

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