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...

24 June 2013

Wales v England

The symptoms in my hands and legs continued steadily until an unfortunate peak on the 16th of March. This date is remembered for a number of reasons, firstly - Wales defeating England in the 6 Nations Rugby tournament to seal the championship – WIN; secondly - because after walking 250 meters after watching the match I collapsed – FAIL.

Google is the Enemy!

What I would advise anyone who is currently in “limbo land” – awaiting diagnosis and finding out the cause of their symptoms, is to stay well clear of Googling your symptoms. We all do it. Unfortunately neurological disorders of all shapes and sizes manifest with my symptoms, which can cause (if you’re like me) a considerable amount of emotional upheaval.  

21 June 2013

Some don’t like it hot.

Frustratingly, the symptoms in my hands became gradually worse and I began to notice that it was severely exacerbated by heat. It was a constant occurrence to wake up with severe tingling fingers/ hands whilst being warm. Then as the day wore on the tingling would become less. The heat as an accelerant of my symptoms became increasingly obvious on a Sunday morning after a warm bath. After a quick dip (10 minutes) both my hands became useless, which resulted in an outward display of frustration (me throwing my antiperspirant on the floor because I couldn’t hold the bottle or press the button with my finger). This was really starting to pee me off. Although I still hadn’t undergone my Nerve Conduction Study (NCS) I thought that the rapid progression of my symptoms, coupled with the lack of sensation, was sufficient enough to warrant a trip to A&E.

Secondary symptoms – What a pain in the leg

It was around the beginning of March that I started to develop another symptom. My calves began to ache dully after walking any distance. They felt like you would expect them too after a colossal calf work out in the gym, but after no exertion at all. I put that down to lack of physical activity. Having moved house, I had gone from walking a few miles every day to driving everywhere in the last 6 months, so I hoped a bit of light exercise would rectify the issue.

Bloody bloody bloods

A few days after my appointment with Dr Hambridge I had my blood taken, and as the title of this post suggests, they took a lot! But as I was surprised to discover, there are a whole raft of other potential ailments and illnesses that present with a tingling sensation in the extremities. Not particularly encouraging, (especially as the on-going joke between me and my partner was that “I never get ill”) but I wanted answers!

I hate needles...

20 June 2013

The Beginning

The end of December 2012 saw the onset of my initial symptoms, which began with a very faint numbness in my fingers. Not a pins and needles sensation but a buzzing feeling in each of my fingers, as well as a progressive weakness with my grip, but fortunately no sensory loss. I didn’t think anything of it for some time...