The Invisible Monster

Having lived with Multiple Sclerosis for many year now, and having written on the subject on many occasions I have decided to extend my writings to InfoBarrel in an attempt to reach a wider audience.

I have been, and continue to be, happy to discuss my experience with Multiple Sclerosis in the hope that sharing the experience will help others in coming to terms with this debilitating condition.

I currently live in Lochgelly, Scotland although at the time of my diagnosis I was working in Aberdeen, Scotland. I cannot be precise with the details of the diagnosis as much of the early experience is reliant on an ever-failing memory.

I began keeping a diary of my life with MS after it became clear that I actually had the condition. Originally I was in denial and was insistent that the problems I perceived were due to a trapped nerve in my back. This was exacerbated after visits to a chiropractor seemed to deliver relief. This, despite my mother having been diagnosed with Multiple Sclerosis many years previously.

This early reluctance to accept the inevitable meant that I didn’t begin diarising my life until after my official diagnosis.

Thankfully some aspects of my diagnosis are still clearly fixed in my mind so, I am able to relate them here with some confidence.

As I mentioned earlier I was living in Lochgelly but working in Aberdeen. This was a distance just a little too far for a daily commute so, I travelled each Monday morning and stayed locally until Friday evening. I must have consulted a local GP to be referred to Aberdeen Royal Infirmary, but these details are more than a little sketchy.

MRI Scanner

MRI Scanner
Credit: Copyright Free

The Testing Process

What I do remember, because it was unusual, is that I was seen by the neurologist, received the tests and my diagnosis all in the same day. I was given an MRI scan and a lumbar puncture or spinal tap. The MRI scan was to look for shadowing in the brain and the lumbar puncture was to get a sample of spinal fluid to be tested for the presence of proteins.

At the time, I was unaware of the significance of these tests or of what the indications might represent. I had tested positive for all of the tests but, the neurologist was evasive about calling it Multiple Sclerosis.

This was in 1994 but it was 5 years later before I saw another neurologist after a particularly bad episode of vision impairment that I was officially diagnosed with MS.

The explanation I was given was that I needed to have had a period of relapse followed by a period of remission and then a further relapse before it could be called ‘Multiple’ Sclerosis.

I no longer believe this explanation to be accurate, but it was the explanation I was given.

Since this diagnosis, I have experienced many different symptoms and come to understand that MS is fairly unique to each individual. There are many symptoms each with varying levels of severity and duration. My current symptoms bear no resemblance to those I was experiencing 10 years ago.

Lumbar Puncture

Spinal Cord
Credit: Copyright Free

The Mechanics of MS

Multiple Sclerosis is a disease of the auto-immune system whereby the body rejects the myelin, the protective sheath surrounding the nerve fibres, as a foreign body and therefore attacks it. The myelin is broken down giving rise to the proteins found in the spinal fluid.

The body will, as a normal part of tissue regeneration, attempt to repair the myelin. This cyclic process of myelin damage and repair causes the relapse and remission periods of the classic form of multiple sclerosis.

I hope to publish future articles detailing more of my experiences. Future updates will be composed during the all too infrequent periods of lucidity that I encounter these days.

Faulty Wiring

Suzanne Robins

Faulty Wiring: Living with Invisible MS
Amazon Price: Buy Now
(price as of Jul 31, 2016)
Suzanne documents her journey with multiple sclerosis from the original diagnosis to her acceptance of the disease and her way of dealing with it.