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

Nerve Conduction Study 2 – This time with a specialist

Following my appointment with Dr Azam (see previous post), I made my way over to the neurophysiology department for my second appointment of the day, with yet a fair few more questions buzzing around my head. The internal walkway between the Jubilee and Brotherton wings of the LGI is really quite far! - But fortunately quite level.

So I took another seat in another waiting room and tried to regain some sensation in my feet. Fatigue was now commonplace among my symptoms and any distance of unassisted walking required a regular sit down to recover. As soon as I perched my posterior I was summoned by Dr Smith (Neurophysiologist) to “the chair”, and after a brief explanation of my mornings activities in the adjacent building we got down to business. I was given a second and much briefer physiological examination, and was told once again that the reflex in my hands, biceps and ankles were unusually weak. I was also asked if I thought I was improving. At this point I thought my symptoms had reached a plateau, and although I had some very unsteady days it appeared that the worst was over. My reply - “Yes, I think I am, very slowly but I think I’m going in the right direction”. That said, I sat down got strapped up and plugged in (not quite, but it sounds more exciting than what actually happens), and before long I was receiving “electric nerve stimulation” or in every day speak “being electrocuted”.

The sensation was still unpleasant and the NCS quickly confirmed that the nerve reading were once again “abnormal” and consistent with a demylinating neuropathy. Thanks to Google and my previous discussion with Dr. Azam I quickly blurted out a list of potential neurological disorders that I had read about, consistent with my symptoms. Dr Smith did seem slightly scathing of Dr. Azam’s diagnosis and treatment requests stating “this isn’t muscular, he quite clearly hasn’t seen my report”. My initial thought was “no one bloody has!”, but went on to say that he suspected that I had developed mild Guillian-Barre Syndrome (GBS) (something that I was already familiar with thanks to Google). GBS is a fairly rare demylinating neuropathy that with enough rest I should make a full recovery within 6 to 12 months.

I asked about appropriate treatments to relieve the symptoms but was told that as there are associated risks and because I believed I was making improvements no treatment should be necessary. Finally I was getting answers and starting to feel some relief, although admittedly I was quite perplexed as to why I wasn’t to receive any treatment, and only if I got worse was I to request a referral back to Dr. Smith.

Still, I left my second appointment feeling more assured than I had in weeks and slowly hobbled my way back up to the Jubilee wing where I was to have an ECG and a final chat with Dr Azam. The ECG was over in a matter of seconds (ticker all working beautifully) and before I knew it I was having some blood taken for my third test of the afternoon. Dr Azam graciously made time for a quick catch up to discuss my second NCS with Dr. Smith and unfortunately seemed unconvinced that GBS was the likely cause. The onset of my symptoms was too long in manifesting for GBS to seem probable, and after another chat with Dr. Dunn it appeared more likely to be something called Chronic Inflammatory Demylinating Polyneuropathy (CIDP), but the extra tests I was having to double check should confirm or dispel this diagnosis.
This was news to me, and something totally new. Clearly my Googling skills left a lot to be desired, especially after leaving such an enormous stone unturned. With the shake of his hand I left the hospital and began counting down the days to my follow up appointment - Hoping to shed a more educated light on CIDP.

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