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...

2 July 2013

Nerve Conduction Study 1 – Plug me in and turn me on!

The day had finally arrived when I would be having my nerve tests! My symptoms had reached what I thought was a plateau, and despite my drugs best efforts I arrived at the Brotherton Wing of the Leeds General Infirmary (LGI) having fully Googled what an NCS can and can’t diagnose, and again ALS reared its ugly head in my conscious.

I was quite disappointed to be greeted by a Neurophysiologist Technician. It frustrated me that as far as I was concerned I was the most important person in the room, so why shouldn’t the consultant be there to conduct the tests? Would this mean more waiting for answers? Still, at least it was being done. Taking a seat in “the chair”, I was attached to a computer which with the help of some electric pulses would monitor the velocity of my nerves. Feeling slightly unnerved (pardon the pun) that the computer screen I was looking at resembled something pre-Windows 95, I began to feel a strange pulsing sensation in my fingers. Seeing the uncontrollable twitch in my hand and the corresponding arch on the computer screen did make me feel slightly reassured that at least my nerves seemed to be co-operating.

It’s an unusual experience to be sat on a chair and to feel various parts of the body receive jolts of electricity to make sure everything is functioning as it should. Although the process wasn’t painful, the higher the voltage the more unpleasant it became. Watching your hand twitch when you have no control over it is a very abnormal experience and “Abnormal” is a word unfortunately I would be hearing again. It was also hugely frustrating not to be given any clear answers straight away. The technician kept telling me they only knew how to conduct the test but not read the responses my nerves were displaying. Apparently my answers were going to have to wait.
After 30 minutes of being jolted in both my arms and legs (and almost walloping the nurse with an unexpected foot jerk) I was told to expect the results in a few weeks as the Neurophysiologist who would be over seeing my case was away. Again my frustrating clicked up a notch, but wait I did.

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