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.

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.

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.

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.

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.