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. 

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.

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!

 

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.

Wales v England

The symptoms in my hands and legs continued steadily until an unfortunate peak on the 16^th 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.  

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...

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...