Gillian smiling

I may have MS but MS won't have me

The numbness in my left toes started years before my diagnosis. Me, being daft, thought it was some stupid injury from too many cocktails and ridiculously high shoes.

It was only when the loss of sensation started to spread up the left side of my body I was made to go to the doctor by my husband and mum.

My GP referred me to neurology and I had an MRI scan. My doctor told me about demyelination. Demyle…What?

I googled it. There it was. The two words I least expected to see, partly because I didn't know anything about it.

Multiple Sclerosis.

Journey to my diagnosis

How could that possibly be what it was? I had just turned 29.

I saw my neurologist to discuss my results. It was a blur. He explained it looked very like MS and wanted to do further testing. Obviously to cover bases. Because it wasn't MS. Couldn't be.

Further testing consisted of loads of bloods and a contrast MRI, which makes the imaging clearer and easier to read. And by god did it make it easier to read.

No lumbar puncture required! There it was, a glaringly obvious diagnosis of relapsing remitting MS.

Read about how MS is diagnosed

Taking in I had MS

My world came crashing down round about me.

Because there, that day, I was told in a matter of fact manner that I had a disease where my immune system was attacking my nerves.

Nobody knows why. Nobody knows how. It happens.

It was difficult to take it in. I cried. All day. And for days after that.

Waiting for treatment

The journey from diagnosis to treatment seemed to take an eternity.

During that time I found out about the Future MS research project [now closed to new recruitment] in Scotland, which aims to predict the course of someone’s MS. As I hadn't started on any of the disease modifying drugs yet, I was suitable to participate.

This made me feel like I was doing something worthwhile. Even if it didn't directly benefit me, it was going to benefit someone in the future.

Gillian and her partner

Decisions about treatment

I had various tests to see if I was suitable for treatment. I also needed to think about whether to hold off and try for a baby and maybe risk more relapses in the meantime. 

Treatment first seemed like the most obvious option to me. Get myself sorted, the rest will come. My husband was completely behind any decision I made.

Finally the day came. I got a letter telling me I had an appointment with a MS nurse specialist, loads of information on treatment and the choice of which disease modifying treatment to go on was mine. Me and my consultant decided to go with intramuscular injections, done once a week.

Benefits and side effects of treatment

Like any drug, there's benefits and risks. The most important benefit being it could slow down MS. Hopefully. The side effects, for me, were initially horrendous. Some weeks I was OK, maybe just a bit of a headache. Other weeks I was completely floored.

There was always a general feeling of being unwell, which was one of the most frustrating things. As someone who has never had the best mental health, suffering from anxiety and depression since childhood, it was hard to pick myself up.

Now, 18 months on, I’m still on the same treatment and it seems to be working for me. I still get the flu-like symptoms on a Friday night after I inject, but not as frequently as when I first started. I still get a bit of an anxious moment beforehand as I know it’s going to be uncomfortable, but it’s never as bad as I think it’s going to be.

Read more about treatments and therapies

Setting myself a goal to achieve

Around the same time I started the injections, I came across an MS Society fundraising post on Facebook encouraging people to give up a bad habit or a luxury item for the month of May.

I suppose my vice is a bad habit and a luxury item all rolled into one - caffeine. In all its forms. I sent the link to my sister and my best friend who immediately agreed to do it with me and we set up a JustGiving page. Within the first few days we had smashed the target of two hundred pounds that we had set ourselves.

It was emotional putting that first post out. It was the first time I had publicly said 'I have MS'. Aside from family and close friends, nobody really knew about it and to be honest, at that point, I didn't want them to. I didn't want people feeling sorry for me.

The messages of encouragement and support was overwhelming, not to mention the donations.

Without routine and something to focus on, my mood dips pretty quickly, so I find it helpful to give myself goals to achieve. Giving up caffeine got easier and we absolutely smashed our target and raised £980 for MS Society!

Kiss Goodbye to your guilty pleasure and help stop MS

What’s happened in the two years since my diagnosis

I decided to go back to college at night and do my higher English, having failed it twice at school. Third time lucky, I passed!

I’m still working full time and MS hasn’t stopped me doing the job that I love.

My husband and myself attend gigs in Glasgow whenever we can and still make time for all the things we enjoy doing. Sometimes it takes me a little longer to get there, but if I have it in my head I’m going, I’ll get there!

With the way research is coming on leaps and bounds, who knows what the future holds? I may always have MS, but I won't let it have me.