About me section

Hi, my name is Paul, I’m 26 and I have CIDP (Chronic Inflammatory Demylinating Polyneuropathy). This blog will try to document my symptoms, progression and treatment from start to finish, along with my frequent encounters with the NHS in both West Yorkshire and south Wales. This blog is an attempt to keep you and more importantly me entertained on this ongoing, ruddy bumpy, uncomfortable and often frustrating journey.

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This is me. Mid way through the Yorkshire 3 peaks in July 2012. 13 miles down, 13 more to go! (Not at all demoralised)

I can honestly say, my feet have never ached so much in my entire life! But from this I hope you can tell I was just like everyone else; reasonably fit, happy, quite outdoorsy and a keen angler (A link to my other blog Paul on Coarse Fishing can be found here). Now, I’m considerably less fit, still happy (with a few moody bouts), generally house bound (unless I break the Zimmer out) and it’s been well over a year since I’ve wet a line. If you’ve read this far you’re probably either aware of what CIDP is or are thinking “what on earth is this guy on about?” If either of those are the case, you’re committed, and I’m about to begin the story from the beginning...

9 September 2013

Scans, scans and more Scans

Since seeing Dr. Azam I had received a series of appointment letters telling me that I needed to attend the hospital for scans to check for anything which wasn’t picked up on the physical examinations. I needed a full abdominal scan as well as a cardiac echo ultrasound to make sure everything (else) was working ok under the surface.

Walking through the Jubilee Wing of Leeds General Infirmary and taking a seat in my respective waiting room, I couldn’t help notice the sheer number of people that were all milling around about me. Porters, nurses and Doctors (funny that being in a hospital) all bustling around in relative quiet. They didn’t seem to be engaging with the people and the whole place seemed incredibly impersonal. Sitting with my partner who also got the same impression, I whispered to her, “This isn’t a hospital, this is a Business of Bodies”. This provided a quick chuckle, before I was summoned to my scanning room. 

Having an ultrasound is an unusual experience, especially when the Doctor applied the warm jelly. It felt as though a fish was slipping up and down on my side, which was an odd experience on its own, but that coupled with the fact that I was now confronted with detailed images of my internal organs. It was all a bit surreal. After assaulting the Doctor with my barrage of questions, apparently everything was ship shape and shiny. There was no signs of any damage to my liver either (I survived my student years unscathed) which was pleasing (and a little surprising). After I had cleaned myself off I was on route to the Cardiac Ultrasound. 

This was a bit more serious and the cardiologist who was taking the test seemed less inclined to answer my rapid fires questions. Apparently there are calculations which need to be made, and asking questions about “how things are looking?” are not conducive to answering/working out said problems. One thing is for certain, regardless of how you think you heart sounds with a stethoscope, it is not how it sounds when coming out of an ultrasound. Think giant squid squirting water all over the place, my partner and I were quite disappointed. It was all over in 20 minutes and for the second time I was wiping off the jelly and peeling my shirt back down over my head. My symptoms were still not in any way consistent and trying to grab hold of a t-shirt which is determined to stick to your torso whilst not being able to use your hands is a difficult job. But I got the job done, and now all I had to do was wait for my next appointment the following week with Dr Dunn. Where I hoped I would receive a full and accurate diagnosis which I had been looking for the best part of 6 months.

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