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

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.

7 August 2013

GBS / CIDP and related support groups. Salvation in Facebook.

On becoming ill it was very apparent that there wasn’t a great deal out there in terms of support groups for Guillian-Barre and CIDP sufferers. It was useful to actually Google the illness  (now that I knew what I was looking for), but the amount of coverage the illness receive was quite scanty (nervous term there).

Citizens Advice Bureau.

A few days after my meeting with Debbie Jackson and Occupational Health my partner and I booked in to the local drop in centre of Pudsey’s CAB. Again looking for some advice on my options, and who I needed to speak to. I was still unprepared to accept that my illness now meant that I was physically disabled (although my body bore the bruises, cuts and scrapes showing that my mobility issues were now becoming a more dangerous adventure).

Occupational Health and other adventures...

On the advice of Debbie Jackson I booked an appointment to see Occupational Health. Apparently there isn’t anything that can’t be organised from Robin Lane Surgery. I wasn’t sure what to expect from this chap, and sadly after my first (and only) encounter, it wasn’t a great deal.

22 July 2013

Meeting with Debbie

It was time for me to make another appointment with Robin Lane Surgery. Prise aside, I never take time off work. If I’m ill, I’m ill, nothing that a Lemsip won’t sort. And if that fails there’s always solphadol! The prospect of taking an extended period of time off to get well never occurred to me, as I was prepared to soldier on.

Centre Parcs – The highs and the lows (and I’m not just talking about the rapids)

The wait between my first appointment with Dr. Azam and the next appointment with Dr. Dunn was agonizing, especially as Dr. Azam had suggested CIDP. Google here I come (never one to follow my own advice)! Having read about the symptoms, progression and treatment online, (it has to be said that Wikipedia’s constant use of the morbidity does nothing to inspire confidence) it seemed fairly clear that the good Doctor might be on to a winner. Some sites and blogs my partner and I read could frankly been written by myself.

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.

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.

17 July 2013

Zip-gate and other inventions...

Since becoming ill I have decided I have probably missed my vocation as a budding inventor. Reduced grip, dexterity and strength comes with its setbacks, these include but are not limited to being unable to operate any anti-perspirant spray cans (easy, use a roll on), using keys with a small head (extremely difficult to hold and twist), pulling up your socks, tightening your belt, holding glasses or trays and most importantly undoing your fly (especially a zipper on suit trousers). This latter problem presented me with some difficulties one afternoon while in work. As the office is generally boiling (I blame the girls) my symptoms were made worse, and on this day I was faced with a dilemma. How do you operate a small suit fly zipper if you can barely manage to move your hands? Things were getting desperate. Right, thinking cap on!


8 July 2013

Abnormal... Great

10 days and several chasing phone calls passed between having my nerve conduction tests and finally receiving a phone call confirming my NCS results had been received. The results were “Abnormal throughout”. Abnormal how, they couldn’t tell me, but further tests would be required. Great. Being told this information via a doctor at Robin Lane Surgery was frustrating (although not in any way the GP’s fault), as they are GP’s and not specialists they couldn’t answer my questions about what these results meant or what could be causing the abnormalities.

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.

Lets get high!

If you’ve read my earlier posts, you’ll be well aware that I am an avid Googler, and yes I Googled Citalopram after being prescribed it for anxiety. Having never been part of the social drug taking scene as a teenager (aside from the obvious teenage hangovers), I have no real experience of getting high.

Relief, Respite and Improvement

Relief was my main thought having received the results of my MRI, undeniable relief. Also, for the first time in some weeks my symptoms began to abate. My legs didn’t feel so heavy, the tingling sensation in my hands drastically reduced. My grip even seemed to be showing the smallest signs of improvement. After feeling unsteady on my feet following my fall outside the hospital a week or so earlier, I even surprised my family by walking 4 or so miles around Temple Newsam Estate as an Easter Sunday treat. I thoroughly enjoyed seeing all the newborn animals in the estate farm and walking around the ponds and orangery.

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.

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...