My long road to diagnosis and an unexpected helper
Iain Clark from East Lothian, Scotland, was working as a police officer when he lost all feeling from the waist down. Here he talks about the long road to diagnosis and how he copes with his MS symptoms.
T’was the Saturday before Christmas (there’s a film there somewhere). A cool evening but cosied up in bed into my usual deep sleep.
Suddenly I woke up and with the most freezing feet, so cold they were painful, like someone had encased them in ice blocks. I woke my wife and to her my feet were hot to the touch! I was a bit worried, so a quick call to NHS 24 had me on my way to hospital.
I didn't know how to feel
I was told “no idea” by a duty doctor, but it was not good so the next day I needed an MRI scan. I went home not quite knowing how to feel. The next day I began to lose the feeling from the waist down, which scared me as I had no idea what was happening. As a serving police officer I was beginning to worry about the impact on my family and my job. I told no one in the job and I wasn’t going off sick.
After three scans over three days it was still a grey area and the Head of Neurology took me on. Back again for a lumber puncture. By this time I had no feeling at all from the waist down but everything still functioned.
Thinking of my own mental wellbeing, I wasn't going to lie down and stay off work. Normality kept me focused, otherwise I think I may have buckled. More checks and my consultant told me he suspected an episode of Transverse Myelitis (TM), a neurological condition caused by inflammation of the spinal cord. I had no idea what that was and was told my feeling could come back but may not, or could get worse, and it’s not curable... a scary time.
I was left with some common MS symptoms
After five weeks at work, which was a scary period, and not telling anyone (other than my wife) I started to get my feeling back. The feeling came back to near normal, but I was left with what I can only describe as pins and needles between all my toes 24/7 and a mid-torso tightness at times.
Relieved and staying positive, as it could have ended up a lost worse, I moved on and got used to the permanent pins and needles, which I still have today.
A big part of my life has been horses so nine years later, in 2015, when I was finding it difficult moving from a crouch to a standing position (scrubbing hoofs) I saw my GP who referred me to my consultant. He attributed this to a muscular problem. He asked me if I wanted an MRI but given he asked and didn't refer, I chose not to as to me this was now muscular and would be a waste of NHS time and money. (Maybe my mistake). I was signed off from TM and told to come back if any issues became evident.
I was tripping more while walking
During lockdown 2020 I was tripping more often when out walking. This became a bit more evident during lockdown exercise walks with footdrop after about 30 minutes. I was having to cut walks short as my legs were giving up and becoming tired. When I look back this had been happening a while before lockdown but I put it down to clumsiness.
In February 2021 my GP referred me to neurology. The first issue was that my original scans had fallen off the system, so they had nothing to go on, and I was sent for a full spinal and brain scan. I received a call to tell me that I had six lesions on my brain and was being referred to a specialist to consider MS.
Soon after I saw an MS consultant who suspected Secondary Progressive MS (SPMS) but could not diagnose me until he had a second set of scans to compare with. So I was told I needed new scans in a year’s time. But come August 2021 I just thought things were not 100% so I contacted my MS clinic and explained that I thought things had progressed. I was worried about waiting a year when it could be done earlier, and I could be on treatment to help slow it down if diagnosed.
Scans confirmed my suspicions
My scans were brought forward and in December 2021 they found a new lesion on my spine. SPMS was confirmed and a treatment plan agreed for early 2022. I have to say I thought I would be more worried, but I think in my head I already knew that’s what it was. In fact, I think the 2015 episode was relapsing remitting MS, but we'll never know if that was the bit I missed out.
Well, how do I deal with this? Be as normal as possible and keep as fit as I can. Sadly, I lost my horse in April. Devastated didn’t even touch it. But fortunately our new Golden Retriever Obi has been a godsend and has given me a great reason to keep walking and push me.
For me it's a case of use it or lose it. I work, I walk lots (sometimes slowly) and I do everything as normal as possible and just deal with the difficult days. I have it but it does not control me.
