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...

22 July 2013

Neurology appointment 1

Neurology Out-Patients is in the Jubilee Building of Leeds General Infirmary and is a surprising distance when reduced to baby steps. Still, I was optimistic, that with 2 appointments on one day I was going to finally crack this nut and get some answers. Dutifully, my partner and I set out and extensive timeline of symptoms, falls and aches as mentioned in my previous post (thanks Rach), which I was prepared to recite to both consultants if required. Arriving at the Neurology and Cardiac desk I took a seat and waiting to be seen by Dr. Dunn.

That may have been slightly presumptuous, and I was actually seen in this instance by Dr. Azam, the Neurology Registrar. After going through a blow by blow account of my symptoms from day 1 to the present Dr. Azam then carried out a Neuro and Physiological examination where he confirmed the deep reflexes in both my arms and legs were very weak (scanty), this was compounded by my considerable difficulty to stand on tip toes, which I could now only do minutely and with a large amount of physical assistance. Nor could I “rock” backwards on my heels, keeping my toes off the floor. My wrist and finger reflexes were also hugely weakened, and although my left was marginally stronger than my right (I’m a righty) they presented no resistance when tested leaving me (for the first time in my life) feeling incredibly limp wristed.

Focus on the positives! There were no obvious signs of atrophy, no trouble “with the water works”, no difficulty breathing, swallowing and I had been maintaining a near constant weight. Another huge plus was that I had rarely been in pain, (aside from a few dull and manageable aches), which in my book was a positive as so many neurological disorders unfortunately go hand in hand with a high level of pain and discomfort. Dr. Azam did his very best to dissuade me from my belief that I may have ALS or MS, especially as all my symptoms and results so far were to the contrary. This did go some way in relieving my health anxiety, especially as this was one of the people who were medically trained to answer these questions. The “interesting case” returns it seems.
After explaining about my previous Nerve Conduction Study (NCS) I was slightly concerned to find out that Dr. Azam had no record of my previous hospital visits, despite being based in the same hospital. Very uninspiring. I also informed the registrar that my second NCS was to be conducted later that day. So after several trips back and forth between the registrar and the neurologist (Dr Dunn) I was informed that I would undergo a series of further tests over the next few weeks to rule out other potential illnesses. I asked what these could be and was told that with my condition it could also be something metabolic causing a muscular problem (more specifically some form of muscle wasting disease), but the next lot of tests would help provide clarity. They included, but were not limited to, a CK Blood test (to test for muscle breakdown), an ECG, abdominal ultrasound, echo cardiac ultrasound, as well as a potential muscle biopsy and lumbar puncture (if the others proved inconclusive). I was to come back in a month, by which time I should have had these tests and my records “should” be consolidated, and I would almost certainly have answers.

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