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.

 photo me_mid_3_peaks-1.jpg

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...

Showing posts with label heavy legs. Show all posts
Showing posts with label heavy legs. Show all posts

9 September 2013

Starting treatment – They hear me rattlin’ they hatin’



The evening after seeing Dr Dunn I visited the pharmacy to collect my prescription. The pharmacist looked at me and my partner in horror when she saw how much I would be taking. She actually proceeded to warn me that this quantity of the immuno-suppressive drugs would seriously lower my immune system. That was the point. 

13 a day and 14 on a Monday. Lucky me!

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. 

Scans, scans and more Scans



Since seeing Dr. Azam I had received a series of appointment letters telling me that I needed to attend the hospital for scans to check for anything which wasn’t picked up on the physical examinations. I needed a full abdominal scan as well as a cardiac echo ultrasound to make sure everything (else) was working ok under the surface.


8 July 2013

The long wait (10 days)

Inconsistency is a swine! Especially when there is no definable link between good days and bad days. All things considered however I was starting to think that I was on the mend. I had had several reasonable days in a row, with improved grip strength and finger movement, coupled with my recent jaunt around Temple Newsam, things were mostly on the up! At times, particularly in the mornings I did struggle with inconsistency. It began to feel like I was once again trying to pin the tail on a bucking donkey running around a field... in the dark.

2 July 2013

Nerve Conduction Study 1 – Plug me in and turn me on!

The day had finally arrived when I would be having my nerve tests! My symptoms had reached what I thought was a plateau, and despite my drugs best efforts I arrived at the Brotherton Wing of the Leeds General Infirmary (LGI) having fully Googled what an NCS can and can’t diagnose, and again ALS reared its ugly head in my conscious.

Monday Morning follow up!

So Monday morning came around and although still shaken up by the weekend’s events, I went back to Robin Lane where I was seen in the emergency care walk in clinic (a brilliant idea) by Dr. S. DeMowbrary. Regaling her with the story of what happened on the weekend she showed obvious signs of concern and asked what I wanted to do. I said ideally (and from what I’ve read) an MRI would certainly rule out any disk herniations, or more specifically spinal lesions associated with MS. Seeing that I was still unstable on my feet and finding it difficult to stand on my tip toes, jump or jog, she requested an urgent MRI to try and advance my situation.

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.


21 June 2013

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.