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...

8 July 2013

Abnormal... Great

10 days and several chasing phone calls passed between having my nerve conduction tests and finally receiving a phone call confirming my NCS results had been received. The results were “Abnormal throughout”. Abnormal how, they couldn’t tell me, but further tests would be required. Great. Being told this information via a doctor at Robin Lane Surgery was frustrating (although not in any way the GP’s fault), as they are GP’s and not specialists they couldn’t answer my questions about what these results meant or what could be causing the abnormalities.

Even though I tried my very best to gleam the smallest amount of information from them, they couldn’t help (because they didn’t have any). All I knew was, something was not right, and it was happening in both my hands and legs, leaving me still pondering those questions. What did this result mean? Was there something more sinister (ALS) at work here? How long will I have to wait to be seen again? Would I need an Electromyography test (I hate needles)? I had a whole raft of other questions which now seem trivial but then seemed of paramount importance. The date of follow up appointment did however come through quite quickly and was actually on the same day as my neurology consult which I had been referred to from one of my previous trips to A & E.

Here was my opportunity. I had two face-to face appointments with different consultants on the same day. I prepared myself to get the most as I could out of these meetings. I didn’t want to forget to ask anything. Between now and these appointments I armoured myself with a “super list”, and would recommend anyone else in a similar boat to do the same. My partner and I sat down and made a full list (or several lists as it happened) of any information that could be useful:
-          List of symptoms
-          Detailed timescale of the progression of my symptoms
-          Things that exacerbated my symptoms
-          Things that improved my symptoms
-          Medical history
-          Family history
-          And any further notes we thought may be of consequence.

This proved to be helpful to both us and the doctors, as those appointments can always leave me a bit tongue tied or overwhelmed and there is always something I wonder later if I should have mentioned.

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