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...

9 September 2013

Appointment with Dr Dunn

I was now getting to be a walking map of the LGI, and come appointment day I intended on getting to the waiting room with plenty of time to spare, on the off chance that I was going to get in and be seen early. My symptoms however had decided against this and prior to leaving for the hospital I suffered one of the worst falls since being ill. My legs were getting progressively weaker, steps were proving near impossible and I was finding being a strong righty meant I was dragging my right foot and taking the brunt of the fall on my left. Cuts and bruises were aplenty. This fall culminated in re-opening on old scab on my left knee as well as adding a new one with a bruise to match, and leaving my confidence quite shaken. 

Before leaving for the hospital I called ahead to arrange a portering wheelchair, which I was pleased to find was waiting for me on arrival. I have always been opposed to using a wheelchair, to me using one when I could actually use my legs was a sign of giving up. But today I wasn’t going to risk it, between my weak legs, aching calves and numb feet, walking aggravated the cuts on my knees and the bruising was already coming out in a new and undiscovered shade of purple. Getting to the Neurology and Cardiac outpatients department was an unusual experience being pulled through the hospital, especially as those chairs only seem to want to go backwards. Still, I had arrived and was now waiting to get the answers I had waited for, for so long.

Getting called into a room to see Dr Dunn I was quite nervous, especially as my last encounter had showed such a gaping hole in my knowledge (not knowing about CIDP), but on entering he instantly put me at ease by saying “Well I can see you’ve not got any better… The good news is I’m sure I know what’s wrong and you are fixable”. MUSIC TO MY EARS. I was fixable. What I had read online had not made for positive thoughts and several times I thought I may be a total write off for many years to come. After speaking with the Dr about the options available to me (Steroids/IVIG) I had to explain that I was due to move back to Wales the following weekend – It was time to get more support, for both myself and my partner from our family. With that said, it was decided that I would start of a course of Prednisilone immediately, with the hope of suppressing my immune system so that my myelin sheath would be able to start repairing itself.

We also discussed the fact that I would probably need a Lumbar Puncture to fully complete my diagnosis. It was eluded to that if I wasn’t going to move, I would have started on IVIG rather than the steroids. But I could get the steroids immediately, and was so happy to be receiving any form of treatment after months of going it without any (medicinal) help at all. I was told that despite taking such a high dosage (60mg daily) the improvements (if any) will take at least a month to start being felt, with more accurate results displayed after 3 months. 3 months to see improvements after more than 6 months of frustration was nothing in comparison.
A quick physical examination showed that the deep reflexes in my legs and arms were totally gone, my wrist and foot drop was incredibly apparent and they offered no resistance when being pushed. My arms were also incredibly heavy, and lifting them above my head was now starting to prove difficult and tiring (which was a new and unpleasant experience for me). My legs were also very weak and I was quite disappointed with how little strength I had when the Dr conducted his tests. Still, I was about to start receiving treatment. This was a step in the right direction!

I cannot convey to you how helpful Dr Dunn was. He was happy to answer my barricade of questions and explain everything down to the smallest detail. He also seemed to appreciate the fact that my partner and I wanted to know as much about this illness as possible, so we could be fully clued up on what we were up against. After explaining about the onset of my symptoms, I was described as a “textbook case of CIDP”, although I’m not sure I was that pleased about the prognosis. What was more, he assured me that despite the fact that I was moving, if I had any questions or queries about anything, I was to contact him immediately and he would do his best to come back to me with answers. He also tried his best to answer my concerns about having a Lumbar Puncture as I have read they can be quite painful. Despite his best efforts, it was going to be case of wait and see for the Lumbar Puncture, and it was not something I was looking forward too.

Although I left the hospital in the wheelchair I did feel considerably better than when I entered. Frustratingly my move back to Wales did mean that I would have to be assessed by another Neurologist as it is generally unheard of for one Neurologist to pick up from where another left off. Still, I had received a diagnosis which was half the battle, and was starting treatment. This was great news, it WAS going to be more positive from this point.

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