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. 

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!

 

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.

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.