Introduction   |   Rollercoaster Ride   |   Diagnosing MS   |   I wrote the book   |   Prehaps their will be a miracle   |   No street lights

Introduction

My name is Lauren Singer BA Hons HDE ms. You might quite rightly wonder what those degrees mean. I am very proud of my honours in history and I am also a qualified teacher. But what on earth is ms and what right do I have to put it after my name? Firstly, I did nothing to deserve it. I did not study for it, I did not have to pass any exam about it. I did not choose it, but it seems as if I am stuck with it. I certainly can't get rid of it.

I got it when I was 16 years old and it has done its best to grind away at me. And then I made a conscious decision. I would use multiple sclerosis (ms) as much as it abused me. I would acknowledge the mischievous beast, learn about him and teach others who might be pestered by the same beast. So I write books about multiple sclerosis so others may come to understand its nature just a bit better.

We who have ms do not ask for pity or sympathy. I do not pity myself so why should anybody else? Understanding? Yes. Compassion? Yes. Love? Undoubtably Yes. So join me on the roller coaster ride that is living with multiple sclerosis.

A rollercoaster ride?

Next year, in April I think, will be an important anniversary. 29 years ago … yes, 29 years ago I made my first acquaintance with that mischievous beast, multiple sclerosis. He came in like a thief in the night, and has never left me. I was an exuberant 16 year old who had overnight developed optic neuritis. "The message is not getting from her eye to her brain," my ophthalmologist told my mum.

And my mother blanched.

You can take cortisone or you can leave it. Either way it will clear in six weeks, he continued reassuringly. It's a virus, you see.

It did clear - thankfully. Life continued and unbeknownst to me so did the multiple sclerosis.

Any bit of inconvenience could be explained away. A friend of mine gave me a shoulder massage, and somehow she had tweaked something because I got a flow of pins and needles to my fingers when I bent my neck. My one leg is shorter than the other by two or so centimetres, so I had a pinched nerve which was why I kept tripping and why I got a spasm in my left leg. But that was every now and then and easily dismissed. I would feel so much better if I could sleep for a year, I reasoned. And I pumped up my iron intake by getting chopped liver from a delicatessen-type shop in Jerusalem. Surely that would make me feel better?

It didn't.

Everyone with multiple sclerosis has their own "diagnosis tale". It took me 11 years before I was finally diagnosed. I had never thought that an illness that I could barely pronounce could be the cause of a string of symptoms that made no sense to me.

Diagnosing MS

The road to diagnosis can be very frustrating. There is no one single test that can diagnose MS and doctors may be reluctant to make a definite diagnosis of multiple sclerosis. The diagnosis of MS is not always clear cut. The initial symptoms may be vague and confusing and clear up spontaneously. It is often difficult to describe some symptoms - I get tingling or I keep falling or I just feel so tired. The symptoms may suggest many other ailments. The neurologist needs evidence of at least two episodes showing involvement of at least two different areas of the central nervous system with effects that are separated by at least a month and persisting for at least 24 hours.


While there is no single test that can give conclusive evidence of MS, there are several examinations and tests used to help establish a diagnosis.

  1. Medical history. Past evidence of signs and symptoms
  2. Neurological examination
  3. MRI (magnetic resonance imaging Plaques show up as white spots.
  4. "Evoked potentials" - a measure of the response of the central nervous system to a series of specific stimulation
  5. Lumbar puncture to investigate the cerebrospinal fluid surrounding the brain and spinal cord.

The roller coaster seat gradually cranks up an incline. Slowly, slowly the open cabin inches up the hill, groaning and straining to its mini pinnacle where it shudders for a heart throbbing moment of anticipation …then whoosh lets go and revels and screams in its abandonment to speed; uncontrolled it plummets further and is caught short by another hill. Seemingly a mountain it strains again then plunges again then strains again and again and again and plunges.

I wrote the book

I wrote the book, A Measure of Time. My life with MS, in 2000 and there have been many promising breakthroughs. The MRI techniques are improving. People have greater choice of drugs to decrease the number of multiple sclerosis inflammations. Medical aid societies are more willing to fund them. If you have relapsing remitting multiple sclerosis, you are fortunate. There are no drugs to stop the multiple sclerosis yet, but the pharmaceutical companies are funding the development of drugs that are effectively reducing the number of relapses.

I am clearly in the secondary progressive stage of multiple sclerosis. I have had multiple sclerosis for close to 30 years. The damage done cannot be repaired. It is not just a case of re-myelination. The nerve cells themselves have died which makes my disabilities permanent. I have what is known as, black holes in my brain. I love that description! Just picture this - an errant thought meanders through my mind, rather insouciant and hapless, and all of a sudden it feels the irresistible pull of a black hole. Gone. The thought is gone. Never mind, there are plenty where that one came from, and I doubt that it was of huge import.

So have I resigned myself to slowly creeping disability?
Never.
My beloved friend, Owen was, fond of saying to me, "never give up five minutes before the miracle".

And perhaps there will be a miracle.

Myelin repair is an exciting current research area that has the potential to both restore lost function and halt the progress of multiple sclerosis. The Myelin Repair Foundation (MRF) is a non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis.

http://www.myelinrepair.org/ What I love about this site is that it explains why the research done does not automatically lead to new treatment. Having explained why research does not speed up a discovery of a cure, it shows how this organization operates.

https://www.acceleratedcure.org

(The World of Multiple Sclerosis and the International Federation of Multiple Sclerosis Societies (Available at http://www.ifmss.org.uk/)

There were no street lights

There were no street lights and it was late at night. My car slowed down as I drove to my friend's house. The headlights dimmed. It's got no energy, I mumbled. Typical (my car was temperamental). But I got there, just. I crawled into the driveway and my car sighed to a stop. An electrical fault, was the explanation the next day. And it happened two days after I was diagnosed with multiple sclerosis.

My car was fixed the next day. It took me longer even to begin to come to terms with the diagnosis. What are the steps and the stages? Anger, denial and eventually acceptance. So I am told. Funny thing is, I have often come to a state of acceptance, but then the MS chirps up again and the process begins again. And again.

"I learned that the hidden nature of my symptoms caused psychological torment often more difficult to endure than the physical distress", so writes Mary E Segal of her experience of multiple sclerosis. The questions can plague one. Am I making all of this up? Am I just seeking attention? If I were more positive surely it will go away. If I were more spiritual, I wouldn't have multiple sclerosis. Why can't I heal myself? I feel like I'm damaged, unlovable. I hate my dependency, I am sure it will chase people away. Who would want to employ someone who might get ill at any time?

The distress is not lessened if the symptoms are mild. So what to do? A year after diagnosis I sought psychotherapy. I needed tools to deal with a life that had become immeasurably more complicated. The ms itself can physically affect the way a person is able to face everyday reality. When I understood that, I was able to begin to forgive myself. To give myself choices, re-gain a semblance of control. A conundrum - re-gain a semblance of control by recognising my lack of control. I cannot explain that, but I can illustrate it by giving examples. They are not unique and are only a shadow of the whole.